My Father, My Brother, and Me

Producers' Forum

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By David Iverson on February 3, 2009 3:36 PM | Comments (173)

JOIN OUR LIVE POST-BROADCAST DISCUSSION! Now that you've watched the film, click here to share your
reactions to the film, tell your own stories of how PD has affected your life and ask any questions you may have about Parkinson's and the making of My Father, My Brother and Me. Correspondent Dave Iverson is logged on, ready to respond, and PD experts Ole Isaacson, Michael Zigmond and Bill Langston will also check in to answer questions over the next few hours. We'll be live from 10 p.m. ET until 12 a.m. PT -- join us now!

 

173 Comments

Nikki said on February 3, 2009 6:57 PM:

Very moving piece. I was wondering if you did any research on the use of skin cells being converted to embryonic stem cells? This was research by a team in Wisconsin. Thank you. Thanks Nikki! The skin cell research is very exciting ...maybe Dr. Michael Zigmond or Dr. Ole Isacson will chime in later during our live discussion with more information ...but I think most people feel right now that we should continue to explore both the skin cell "conversion" and embryonic stem cell research because it's too soon to tell which will work best. Nikki, thanks for the question; an excellent one. This not an area of specialty for me, and we have no experience with skin cells. However, I do know that there are groups -- and one of the Wisconsin teams may be among them -- that are experimenting with "fibroblasts" taken from the skin as a source of cells for the treatment of experimental forms of Parkinson's disease. At the moment, research is going on with stem cells from several different sources and it is important that this be the case, that we try all possible leads until we know we have the best one. - Michael J. Zigmond, PhD, University of Pittsburgh Skin cells from individuals can be 'reprogrammed' to become similar to embryonic stem cells, that in turn can be converted into therapeutic dopamine neurons. Recent work shows that such dopamine neurons can to some extent replace the ones that have been lost to the disease, at least in laboratory experiments. The hope is that such transplanted dopamine neurons will provide a viable to drug treatments or surgeries available today. See these recent findings at the Harvard Stem cell Institute link below http://harvardscience.harvard.edu/foundations/articles/reprogrammed-adult-skin-cells-treat-parkinsons-disease-animal-model -- Dr. Ole Isacson, Harvard University
Susan said on February 3, 2009 6:58 PM:

Wonderful documentary. I think it is about all disease processes, not just Parkinsons. Susan, thanks for the comment. Yes, I agree that there is much in the documentary that is relevant to a great many diseases, perhaps all of them. I am not myself an MD. However, it does appear that patient's determination to "conquer" almost any disease can have an enormous influence on their state of health. And exercise seems to be useful for a great many conditions, from diabetes to Alzheimer's disease to stroke...and to Parkinson's. - Michael J. Zigmond, PhD, University of Pittsburgh
Jon Meyer said on February 3, 2009 7:00 PM:

enjoyed the program. I was diagnosed with PD 13 years ago at age 39. I'm still able to work as an auto thechnician but have slowed down within the last few years. Hi Jon: thanks so much for watching ... and good luck to you ... it inspires me that after being diagnosed so young you're still at it! Dave I.
Bill Trewin said on February 3, 2009 7:01 PM:

Hi Thank you for a truly wonderful film on Parkinson's. It will be very helpful to everyone living with or involved with the care of people with PD. As a former runner I found a trick that helped me to continue running longer. Take a wide rubber band wrap it around your weak wrist and leave a space of a couple of feet and wrap the other around the wrist of your good wrist. The good side will pull the weak side in a more natural motion. About 4 years ago I started Nordic Walking. It really helps with balance issues and when I add music very interesting things happen. One marathon and 15 half marathons later I still get that runners high at the finish line. Check out my blog at http://nordicwalkingmaritimecanada.blogspot.com Bill Trewin, Moncton, New Brunswick, Canada Age 55 diagnosed at 49. ""I have Parkinson's...........it doesn't have me" Bill, what a great set of ideas! Though I am a PhD researcher and not a movement disorder neurologist, it is clear to me that you have combined several factors that are likely to be therapeutic -- movement, music (which can provide a valuable external stimulus), a considerable amount of intellectual activity, and real physical exercise joined with motivation. (Wish I could get myself to do a marathon!) I hope others will give this and related variants a try. Keep it up! - Michael J. Zigmond, PhD, University of Pittsburgh
wendy said on February 3, 2009 7:02 PM:

Why did the documentary not look at the pace-maker surgery now available for some Parkinson's patients? My sister got Parkinson's at 47 and now at 54, she is one of the youngest persons to have had that surgery. It is such a breakthrough treatment; I am surprised there was no mention of it. Hi Wendy: It's a very good point. We thought a lot about doing something on DBS ...the procedure you describe. And it's true it can make a real difference for a number of years to people with advanced PD. We do reference it early in the program, but in the end, we decided we could cover only so much and that DBS, while very important, wasn't quite as central to the pursuit of finding a way to either slow the progression of the disease or cure it on a permanent basis. But thank you for raising this point. Dave Iverson Wendy, you are absolutely right, deep brain stimulation, which is probably what you are referring to, can be a wonderful treatment for many individuals, often producing a dramatic reduction in symptoms. However, I think the program chose to use its limited time to focus on current research that is trying to deal with the progression of the disease itself, i.e., how one might prevent or slow down the loss of nerve cells and/or replace nerve cells that have died. - Michael J. Zigmond, PhD, University of Pittsburgh
Tim said on February 3, 2009 7:02 PM:

Great piece, very interesting. I did not hear any mention of brain stimulation. Is anyone seeing successful results w/ this technique? Tim, you and Wendy had essentially the same important question at the same time. Please see my comments to her. Michael J. Zigmond, PhD, University of Pittsburgh I believe surgical techniques were mentioned along with drugs in the first segment of this program, without specifically mentioning "deep brain stimulation" (DBS), which indeed can be very helpful in some patients. There seems to be some consensus among clinicians that such DBS surgery (placing electrodes -- similar to pacemakers in specific deep brain locations) can help some patients who first respond well to dopamine enhancing drugs, but later experience severe side-effects that render these medications highly problematic or adverse to use. - Ole Isacson, PhD, Harvard University
johnny morton said on February 3, 2009 7:03 PM:

why no coverage of dr michael levesque's dramatic breakthrough using one's own adult stem cells - or the success stories in cologne germany - again using one's own stem cells? Hi Johnny See my earlier response on the reprogrammed skin cell question ... it is very exciting ... but the research was not far enough along at the time we were filming to do more than reference it ... Dr. Isacson may have more to say on this too. Thanks for watching and for posing your question. Dave Iverson
Bob said on February 3, 2009 7:03 PM:

I viewed the film online a few days ago and this eveing watched it with my wife on PBS. The thing I had forgotten to think about is how a loving spouse and caregiver feels about the future. They suffer along with the one who has PD. I must never forget that and how she feels as we go forward in time.. Excellent content in your program. I must say that as a person who has dealt with Parkinson's now for 7 years, I support President Bush's stand on stem cell research. Thank you for reminding me there is hope and what matters now is what we do with each day we are given. Bob, I cannot agree with you more. Though not an MD myself, I have seen many instances in which a spouse or other close friend/relative were critical to the health of the patient, and in turn were greatly affected by the disease. Both patient and health care workers must remember to care for the caregiver! I think you are also saying that stem cells are a crucial avenue for research, and I agree with that, as well. In fact, I hope that even more opportunities will now be available for such research. - Michael J. Zigmond, PhD, University of Pittsburgh.
Jean said on February 3, 2009 7:03 PM:

Pardon my ingorance....I'm the caregiver for both PD parents and fightened about getting PD & Alz. What is the name of the test you're referring to? Hi Jean: I don't believe there are tests for everey genetic mutation, though that day is coming ... There is a test for the LRRK2 mutation, which is the mutation that causes Parkinson's the most frequently. That's the test Sergey Brin, the Google founder, took. Thanks for posting your question! Dave Jean, I have read Dave Iverson's response and only wish to add a cautionary note. First, genetic mutations are often only risk factors for a disease and do not imply that the disease will definitely occur. Second, some genetic tests are prone to error and can yield "false positives," i.e., an indication that a mutations exists when it does not. Thus, though not an MD, I feel it is critical to approach genetic testing with caution and the advice of a genetic counselor with experience in the particular condition about which you are concerned. - Michael J. Zigmond, PhD - University of Pittsburgh. thanks Michael ...very important clarification ... I wrote my response too quickly! Michael is exactly right ... the fact that you have the mutation does NOT mean you necessarily will get the disease. Way to keep me on my toes Michael! - Dave
Stephen Levings said on February 3, 2009 7:03 PM:

About exercising, my dad used to play golf before he was diagnosed. Do you think I should try to get him back on the course? Hi Stephen: I'm all for exercise in any form! But then again I'm no golfer! Michael Zigmond, you're the expert, what do you think? Dave I. I am also not a golfer, but have three thoughts based on research with experimental animals. First, some of the monkeys that you saw in Judy Cameron's lab were really doing more walking than running and they were significantly protected, too. This may provide to be the case for the patient's in Lisa Schulman's important clinical studies.This would suggest that the sort of walking one does on a golf course is almost certainly good, though the more and the faster the better. Second, in the case of golf, the walking that one can experience on a treadmill is combined with highly skilled movements, balance, and both social and intellectual stimulation. Laboratory research suggests that each of these factors can be helpful in promoting brain plasticity. So, yes, golf for dad...and for you, too! - Michael J. Zigmond, PhD, University of Pittsburgh
Jim said on February 3, 2009 7:03 PM:

In addition to my 12 years with Parkinson's, I was diagnosed with Hodgkin's Lymphoma last year. I am about to undergo a stem cell transplant (using my own stem cells) to treat and hopefully cure my cancer. How come there is a stem cell treatment to possibly cure my cancer, but no stem cell treatment to cure Parkinson's?
Paula Spencer @ Caring.com said on February 3, 2009 7:04 PM:

Outstanding informative, evenhanded, and -- unusual for the genre - upbeat documentary. Bet you got a lot more people exercising, too. Thanks Paula ...sorry to be so slow in responding to your comment. I really do appreciate them ... and it's been satisfying to see the response this evening! Dave
Kathleen Reardon said on February 3, 2009 7:04 PM:

Thank you Dave for this personal look at Parkinson's. It is both moving and informative. Exercise is hardly mentioned by doctors and yet, despite how difficult it can be, I find it makes a very positive difference. So too does mental exercise. I don't know why so many PD patients become painters as I have even if they never were before. It's as if the mind seeks other paths or enables them in order to survive and thrive. PD is not something I would choose to have but it does seem for many to cause a different way of seeing and inspires creativity if you let it. Do you have any thoughts about this? Or are there medical or scientific explanations you and the PD experts might share? Hi Kathleen: Wonderful comment! I do think, in an unusual way, it can open doors ... as Michael J. Fox says in the film "it has asked more of me than I ever would have myself." I think there is a huge arena of research to pursue here ... Oliver Sachs book "Musicophilia" explores some of this terrain too. Dave I.
Aaron Bedell said on February 3, 2009 7:05 PM:

Just watched show, wonderful job. Mother is Kinesiologist wiht PD clients. just txted her about it and I would love to get some links to the scientific information concerning the effects of Exercise on Dopamine and PD ect. Thank you for your time I wish I had a better question than you again. Aaron Aaron, Your mother can find many reports on exercise an Parkinson's disease via the National Library of Medicine web site. She can also email me at the University of Pittsburgh or via this program. I hope she gets involved -- the more the better! - Michael J. Zigmond, PhD, University of Pittsburgh
Gary & Sally Jo Dixner said on February 3, 2009 7:06 PM:

Gary, my husband, has had Parkinson's disease for 20 years. I worked at Vanderbilt Med. Ctn. in the Neurology Clinic as a nurse. We have been married for 45 years and have living with this disease for almost half our married life. Last year, Gary had DBS (Deep Brain Stimulation) at Vanderbilt Med. Ctn. and is now so much improved that it is like almost starting over. We enjoyed the show. It brings all of us so much hope to know that people are talking about this disease and researching ways to cure it. We have a support group here in Crossville, Tennessee (in our small community) that has about 30 participants. We meet monthly and we notified all of them about this wonderful program so we all could watch! Will you be continuing to follow the research and have a show to report on this again; or a show on DBS and related treatments? We thank you for this and all you do and show about our world! Sally Jo Dixner Hi Gary and Sally: You might want to look at some of the other postings earlier on this blog regarding DBS ... it's an important treatment option and I wish we could have done more on it. Maybe another film! Dave Gary and Sally Jo, I am very glad that you found the program a source of hope. We involved in the research are also hopeful, though we also know that it will take a lot of work and more funding than is currently available. (Write your legislator about this!) It would be great if Frontline could do a follow up. But in the meantime, you can check the web sites of organizations like the National Institute of Neurological Disorders and Stroke, the Michael J. Fox Foundation, and the National Parkinson Foundation for regular updates. You can also ask for copies of their newsletters. - Michael J. Zigmond, PhD, University of Pittsburgh
Carol said on February 3, 2009 7:06 PM:

Absolutely wonderful show. My mother had Parkinsons and ended her life only being able to move her eyes. She could swallow but she had to be fed. I remember both her and her grandmother having a permanent head shaking. I always wondered how they could stand their head always and constantly shaking. So far, my head is not shaking, but I have a need for stem cell research as well for cartilage production, lacking any cartilage at all in both knees and both hips. Walking is becoming excruciatingly painful. I sent a request to the White House to work on reversing the ban on stem cell research following this show tonight. I will watch this show several times. It is the best kind as it provided information as well as how the subject matter affects real people--science and anecdoctal. One is never any good without the other. Hi Carol: thanks for your moving commentary. And Michael J. Fox completely agrees with you about how science needs to focus on helping people. You may want to watch our extended interview with him elsewhere on the website ...His foundation is totally focused on that task. Dave I. Carol, thanks for taking the time to write to the President about the stem cell ban. I now encourage you and your friends to broaden your efforts still further to include Congress and to include a plea for increased research funding, as well. At a time when scientists are beginning to make breakthroughs in a great many areas, we must convince our Federal representatives to provide the financial support needed to move forward. It is true that the economy is tight and there are a great many demands on limited resources. However, money invested in research pays enormous dividends both in improved quality of life and in costs. - Michael J. Zigmond, PhD, University of Pittsburgh
Nora Bourrut said on February 3, 2009 7:07 PM:

I am a retired teacher, diagnosed O1, an overwhelming year, in Sept 11 we were driving to DC and saw the debris on Staten Island. My life changed so much within one year. This program is so very well done, it mirrors all of those with disabilities and reminds us what damage can be done to the body... not only by nature but also by man....( who is now no longer in charge!) Thank you for this special program
Susan said on February 3, 2009 7:07 PM:

Very interesting program, very informative. I am a 51-year-old mother of 3 who was diagnosed three years ago when I was 48. Stem cell research should be a priority of all politicians _ regardless of party _ as the outcome of the research will impact older and younger people across all party lines. More people _ even those involved _ can learn something from the documentary about the disease _ it is not just limited to tremors. It was very enlightening. Nora and Susan: Thanks so much ...sorry I'm just responding four hours later! Dave
Bill & Susan Plank said on February 3, 2009 7:08 PM:

Hi Dave-- We were moved by the program. We have read and listened to pretty much everything that has been on NPR and PBS the last few days, as well as the News Hour feature tonight. What about depression in Parkinson's patients? Is it a common symptom of either the disease or some of the treatment options? Sometimes depression or low mood swings precede certain diseases, even before diagnosis. True of Parkinson's? Can you speak to this subject, either from studies or from experiences of those you have known? Hi Bill and Susan: First, greetings old friends and thanks for watching! I hope some of our researchers will weigh in with more, but yes depression is a relatively common symptom and yes, as I understand, it can precede the diagnosis itself ... so could even be an early warning sign. Dave Bill and Susan, I am not an MD but I know depression is very common in Parkinson's disease. It can begin before PD, though it certainly does not mean that PD is around the corner! Many other conditions can cause depression. In fact. clinical depression is a very serious condition in its own right. Depression can also begin after the onset of the neurological deficits used to diagnose PD. - Michael J. Zigmond, PhD, University of Pittsburgh
Shelly Heins said on February 3, 2009 7:08 PM:

Wonderful broadcast,I have been taking IV glutathione for the last three years with great results. Too bad that it is never mentioned. Hi Shelly: That's a new one to me ... we'll try to get one of our experts to respond later this week. Dave I.
Jane said on February 3, 2009 7:08 PM:

Wonderful program! Any info on CoQ10 and PET scans for Parkinsons would be helpful. Thanks so much. Jane Hi Jane: Dr. Bill Langston will join the discussion lagter and may be able to comment on CoQ10 ...I know it's something under study right now. Dr. Isacson may be able to say something about PET scans ... As I understand it, they do measure dopamine production but I think are considered too expensive to use as a diagnostic tool. Dave I. CoQ10 is currently under clinical trials. This is not my area of expertise, but I believe that there is some reason to believe that it can produce a small but significant effect. As Dave has written, PET scans are very expensive and not really practical as a diagnostic tool at the present time. However, I expect that brain scans of some sort will become increasingly valuable as costs go down and their value as a way to monitor disease progression increases. - Michael J. Zigmond, PhD, University of Pittsburgh
Harry Edwards said on February 3, 2009 7:10 PM:

I wounder how other countries reseach is proceeding in stemcells. Are they making any head way I this field. I won't miss Bush . Despite the hampered freedom of research on stem cells in the USA, many breakthroughs have actually happened right here. But it truly is a world-wide effort. Thankfully, scientific and medical research is traditionally linked by scientific publishing all over the world. With the internet and data-sharing we practically have world-wide access and communication about new stem cell results on a constant and daily basis. Stem cell science is perhaps the most "hot" scientific field anywhere, and reprogramming of adult cells (like skin) into stem cells was selected by the famous Science Magazine (USA) as the most remarkable and promising scientific field of 2008. See also promising work on Parkinson's disease using stem cells derived by reprogramming skin at the following link. http://harvardscience.harvard.edu/foundations/articles/reprogrammed-adult-skin-cells-treat-parkinsons-disease-animal-model - Ole Isacson, PhD, Harvard University
Debbie Mleczko said on February 3, 2009 7:11 PM:

Both our parents had Parkinson's (I have 2 sisters). We grew up in the South Shore of Long Island if that's toxic. Near JFK in the 5 towns. My 19 yr. old daughter has had Progressive Dystonia since she was 8. I have been tested and so has my daughter for Huntington's Disease, Wilson's and Rapid Onset Parkinson's. All negative. What do you think of that? Hi Debbie: It's an important point ...it shows that even if there's a history, it doesn't mean everyone will necessarily get it. And it also show that people in the same family may get PD, but it might not be genetic ...it could be that all family members were exposed to some environmental toxin that caused the condition. Dave I.
Christian said on February 3, 2009 7:11 PM:

Great piece. I really appreciated your courage in sharing your own story and that of your family. The dignity with which you interviewed individuals afflicted with the disease was clear. I also enjoyed the examination of exercise as an alternative and empowering possible treatment, as opposed to more mainstream surgical or psychopharmaceutical approaches. I appreciated the man you interviewed who suffered the spinal cord injury and who spoke of his burgeoning awareness of his own moral dilemnas related to stem cell research. While I do hope stem cell research is funded under the Obama administration, it made me consider my own views and the complexity of the issue for those who oppose it. Well done, Dave. --a fellow Norwegian American Hi Christian: I so appreciate your saying that ... I do think it's crucial to thoughtfully consider all views ... and nothing could make me happier than to do a program that provokes that kind of reflection. Thank you! Dave I.
Joel cohn MD said on February 3, 2009 7:11 PM:

My father recently passed with Parkinsons. He too was a cardiologist as am I. The genetic component and risk was fascinating and a wee bit scary. Is the test for LRRK2 mutation commercially available, and if so how does one pursue this info? Thanks Hi Dr. Cohn: Yes, the test is available ...it got some attention recently because Google founder Sergey Brin took the test ... his mother had PD and he too has the LRRK2 mutation. Thanks for watching! Dave I.
Daniel Hu said on February 3, 2009 7:11 PM:

Mr. Iverson, I found your news story on Parkinson's Disease to be educational, moving and inspirational. Neither I or any of my loved ones are afflicted with this condition, but the information you provided helped shed light on an issue that I previously had very little knowledge of. It seems clear that exercise has positive effects on healing the body in ways we have not yet grasped. What I would be curious to know is what percentage of professional athletes in any sport are or have ever been afflicted with Parkinson's. I've never come across a sports story of such an incident (I'm a huge sports fan by the way). I would guess that a representative sampling of professional athletes in major sports throughout history who have ever had this condition could be further evidence of the positive effects of regular exercise. This was just a thought I had as I watched your program (not sure if its worth investigating). Thank you again for the terrific piece and I wish you well in your battle against this disease. Sincerely, Dan Dan, Thanks for an excellent suggestion. I certainly agree that exercise almost certainly has benefits that we are still discovering. As I implied in the interview, we surely evolved to be active exercisers and it seems only common sense to get back to it! AS for PD, a couple of years ago a large study of individuals was made, and it was found that people who had exercised vigorously had a significantly lower incidence of PD. I agree that an analysis of the incidence of PD among athletes would be informative. However, there is some evidence that head injury can actually be a risk factor for PD, so this would have to be taken into consideration in some sports. Also, most athletes end their professional careers fairly early, often 20-30 years before the motor deficits of PD usually occur. Unless they keep up their exercising, it is possible that athletes would lose the likely benefits. - Michael J. Zigmond, PhD, University of Pittsburgh
Steve Clark said on February 3, 2009 7:14 PM:

Thanks for the moving, insightful documentary. My father's mother had Parkinson's, my dad had the disease and died from its complications, and lo and behold I now have PD(three years diagnosed) and I'm still in the process of reordering my life and its priorities. And while my daily movements and muscle control will never be the same, I'm keeping an upbeat approach toward each day--that's the only way to show this disease that it ain't gonna be easy to defeat me. I was particularly impressed with the exercise aspects of the documentary, and although I'm simultaneously suffering from diabetes, high blood pressure, and arthritis at aged 62, I try to keep as active as my various ailments allow. Thanks again for airing such an illuminating and, to me, uplifting film. Hi Steve: Your story is so inspiring! Given all that you're contending with. I'd say you are doing terrifically well ... and you're another example that attitude is so crucial. Thanks for sharing your story! Dave I.
Mary Ellen Kohler said on February 3, 2009 7:15 PM:

Thank you so much for the very informative program. It peaked our interest because you see my husband, brother-in-law and late father-in-law all have (had) Parkinsons. Not only that, my dear sister is now in the last stages of Parkinsons. We had heard of the exercise program through news reports on research through our local Cleveland Clinic, but was led to believe that the exercise regimen was only temporary. If you need more patients to be part of any research program, I am sure my husband would be interested. Again, many thanks for keeping this disease in the public eye so that awareness of the much needed research and funding can continue. We pray that the change in the administration will help in this area. Mary Ellen, It is too early to say how long the effects of exercise will last but laboratory research suggests that they will significantly slow down disease progression, particularly if the exercise is vigorous and the program long lasting. And of course I agree about the importance of increased funding. At present only a very small percentage of the excellent research proposals submitted to NIH are actually funded. With a population that is getting increasingly old, this is extremely short sighted. Funds spent on research now will dramatically reduce health care costs later. We must all keep reminding our elected officials of this truism! Michael J. Zigmond, PhD, University of Pittsburgh
Sylvia Byland said on February 3, 2009 7:15 PM:

I am 69 years old and was diagnosed 2 years ago forcing me to stop my much loved profession of 40 years of dentistry. I live in a small town and would like to know how one finds some one who can help design a personal exercise program. I do walk every day, but have never heard, before seeing this presentation how important exercise is. My neurologist has never mentioned it. Thank you Hi Sylvia: Thanks so much for writing ... You might want to check out John Argue's website. www.johnargue.com. I'll try to come up with more information to share with you on this topic too. It can be so important I think. Michael Zigmond may have thoughts on this too. - Dave I. Sylvia, a great deal of research is now going on to determine how best to design an exercise program for Parkinson’s disease. It will take several years before we have real answers. However, though not an MD, my prediction is that what is needed is vigorous exercise for 30-60 minutes a day most days of the week (preferably under the supervision of an exercise physiologist) coupled with opportunities for social and intellectual “exercise.” I am disappointed that your neurologist did not mention the likely value of exercise. You might ask him about the role of exercise in neurological disease; there have been a number of articles about this which he will be able to find. – Michael J. Zigmond, PhD, University of Pittsburgh
Bonnie Schupp said on February 3, 2009 7:15 PM:

Wonderfully moving piece! My mother died of Parkinson's and now my 87-year-old father has it. The knowledge of what lies ahead gets him down. Are there any positive words you can say to help him face his challenges? Hi Bonnie: It is tough ... and in some ways it's easy for me ...my symptoms are mild and I'm relatively young (if you consider 60 young!) ... But I would just say that hope is what gets us through ... Peter Gomes, the Harvard chaplain says "Hope is what allows us to get to a place we've never been before." I think that's what all of us need to do ... researchers and patients alike ... we need to keep fighting and get to that new place .... and hope is what helps us get there. And I do think there's lots to be hopeful for. I'd also encourage you to read Michael J. Fox's memoir "Lucky Man" ...it's terrific. Best wishes, Dave I.
Barbara Smith said on February 3, 2009 7:16 PM:

The program touched me. My husband just passed away on Dec 23, 2008 after a battle with (PSP) Progressive Supranuclear Palsy. A rare form of Parkinsonism. He had it for five or six years we think. He was always a very active person. Into his 70's he still played tennis, golf, and walked every day. His last two years he went from walking to walker, then to wheelchair. It progressed rapidly. He exercised with a personal trainer up until the week before he passed. He always felt that there would be a cure and he was going to fight it. He lost his battle at age 77 and I miss him terribly. I always felt that if Congress would allow the stem cells there could be some help or a cure. Hi Barbara: Thanks for sharing your story ... a colleague of mine had a parent with PSP ...and I know how devastating that progression can be.We'll just have to hope that we make progress in the years ahead ...and I think we will! Dave I.
Heather said on February 3, 2009 7:16 PM:

What a wonderful story of hope. I am a physical therapist who works specifically with people with Parkinson's disease. The research that is being done on the effects of exercise is so interesting and exciting. Thank you for highlighting this area of research, these amazing researchers, and for helping to promote physical fitness. So great to see John Argue and his exercise class!
Anne said on February 3, 2009 7:17 PM:

I am a physical therapist currently teaching an exercise group designed by a Ph.D., PT specializing in Parkinson research. There are several classes running throughout the area with regional medical centers and YMCA's participating with personal trainers, physical therapist and occupational therapist serving as instructors. We have seen miraculous changes in our participants and I applaud the integration of exercise in your documentary!!! We too utilize treadmill training for 30 minutes each session. Most important is that the exercise prescription is very specific for individuals with Parkinson Disease and it is paramount that those offering the exercise class have specific expertise and knowledge of Parkinson Disease. Hi Heather and Anne: So glad that people with your expertise offered these comments ... My daughter teaches pilates and yoga and is developing a course for people with PD. I think this is such an exciting new arena ... so thank you so much for dong what you do! Dave I.
Wendy said on February 3, 2009 7:17 PM:

Okay, another question. . .a distant relative of my mother's died from Huntington's, and my sister got Parkinson's, as I have already written, at 47. Is there a connection between those two diseases? No, there is no causal link between Huntington's disease -- which has one known familial gene (named huntingtin) that is mutated and this disease is only transmitted by this gene, and Parkinson's disease -- which can be caused by a number of other genetic and environmental factors interacting during a life-time. However, although quite different -- these 2 distinct brain diseases both are categorized as different "movement disorders", as the cardinal symptom of both diseases is the person experiencing reduced control of their movements. - Ole Isacson, PhD, Harvard University
Kirsti Potter said on February 3, 2009 7:18 PM:

*** FROM THE DISCUSSION MODERATOR *** We're experiencing a lot of volume as people join our chat -- which is wonderful! Dave and our scientists are working to answer as many questions as possible -- please bear with us as they work to respond as quickly as they can. Thank you!
mark said on February 3, 2009 7:18 PM:

great piece. i have a question for some of the researchers who have been working on implanting stem cells: putting dopamine-producing stem cells into striatum has so many problems associated with it, why not implant dopamine-producing stem cells into substantia nigra pars compacta and then focus on axon guidance to get them to innverate the correct targets? they could follow the endogenous projection pathways (medial forebrain bundle, etc) perhaps with a little help (i.e. growth factors and cytokines). hopefully the new neurons would take after the few surviving endogenous dopamine neurons: receive the same sorts of inputs, fire in same tonic/phasic pattern and innervate the correct postsynaptic subcellular locations. this seems like it would produce a much more therapeutic result with few and less severe side effects (if it worked). given what we know about axon guidance and targeting, it seems like this is a reasonably approachable problem. are there other issues associated with this concept that have thus far stymied it as an avenue of investigation? thank you. The fetal brain during normal brain development is so small relative to an adult person's brain, that the active growth phase of implanted newborn neurons into an adult person is not sufficient (for time) to allow connections from the adult substantia nigra (the normal home of these dopamine neurons) -- to their place of connection (the striatum). Nonetheless, to overcome this, the young dopamine neurons that have been implanted in patients (in the clinical trial directed by Dr Ivar Mendez, shown in the program) have in some cases been placed in both the substantia nigra (their normal home) and in their place of connection (the striatum). The dopamine neurons have some characteristics that make them very good at connecting even when not at their normal location, and transmit their dopamine impulses at a steady rate. Those are some of the reasons we think the implanted dopamine neurons can function so well -- in some of the patients in the series I have studied with Dr Mendez. - Ole Isacson, PhD, Harvard University
Sue Bogdon said on February 3, 2009 7:19 PM:

I found the program very interesting and informative for both Parkinsonians and care givers. With regard to research, is any center or group working on a national database of people with Parkinson disease? Does anyone have suggestions for combining the research from several centers to avoid re-inventing the wheel or is there so much competition to be the first to obtain the patent on the discovery of a cure that sharing information is not a reality? Hi Sue: This is a really important point! Maybe Bill Langston when he joins the discussion will have some thoughts on this. I know California is developing a statewide database, but I don't know about nationally. And your second point about coordination is really central. The Michael J. Fox foundation is also interested in this question. You may want to read more on their site. Dave I. Hi Sue, I am glad that you raise this issue because I absolutely agree that coorperation is essential. However, I believe that nearly all of us in research are motivated primarily by a search for improved treatments and, ultimately, a cure. Few expect to get rich as a result of our work. [If that was our goal, we would probably pick an easier route! :)] There is, in fact, a great deal of cooperation among scientists -- we share data at scientific meetings, pool data through data bases, and publish our results for all to see. As for the specific question about PD, yes, there are data bases in which information is collected from many different research centers. In addition, most clinical research involves multiple centers. - Michael J. Zigmond, PhD, University of Pittsburgh Our Institute, working with UCLA and the State of California, is in the process of setting up a state-wide registry which we hope will eventually include every patient in the entire state for research purposes. This will be critical if we are track down the cause of the disease. We are hoping that it may someday become national. For more information go to our website at www.thepi.org. Regarding sharing research data, the national Parkinson’s organizations, working NIH, are set up a listing of all funded projects in hope of getting everyone to share data (the Michael J. Fox foundation, for example, requires grant recipients to share there results), so hopefully this will speed the science. Internet is a huge boon in this regard.
Nan Costello said on February 3, 2009 7:19 PM:

Our family also has Parkinson's disease as part of its' story. My maternal grandfather, my mother, her two brothers, and my paternal Uncle all had Parkinson's. With my Mom, I saw a night-and-day difference between how she functioned before and after she stopped working. She was 72 when she was diagnosed and she loved her job as assistant manager of a woman's apparel store. Her children and husband talked her into leaving that job because we thought she deserved to 'enjoy' life rather than work. In retrospect, I wish I had kept my mouth shut. She was so much more dependent when she was not working. I'm hopeful that research will continue and a cure is near at hand. Hi Nan: It's a good point ..about staying active ...but please don't second guess yourself. We all do the best we can with what we think is best at any given time ... and I'm sure your Mom understood and appreciated what you were trying to do. Dave I.
Matt Carns said on February 3, 2009 7:20 PM:

I watched the show with interest. I am a 47 yr old male diagnosed in April 08 with early onset PD and am taking azilect as a neuroprotective med. Does anyone have an opinion on this med? I have also been told by my DR that the patients that do the best are ones who consistently exercise. I am being monitored by the Movements disorder clinic at Georgetown Univ Hospital. Thanks Matt Carns Hi Matt: That's the medication I take too ... and I'm getting similar advice ... I don'tthink we know for sure that it's neuroprotective, but that's definitely the hope. When Bill Langston joins the conversation he may have more thoughts on this. Dave I. Two comments: 1. Many physicians use Azilect (rasagiline) early on to delay the need for stronger medications, and with the hope that it may actually slow disease progression. While the latter is not proven, a major trial has just been completed to test this hypothesis, the results of which should be published soon. The good news is that the drug seems to have a very low side-effect profile when given as the only treatment. 2. I can’t say enough about the importance of exercise. I tell my patients that walking at least a mile a day helps keep the doctor away. Also, a well done study is now ongoing at University of Maryland (feature in the program) to study this in a very scientific way. - Dr. Bill Langston, founder and director, The Parkinson's Institute
robert flashman said on February 3, 2009 7:20 PM:

Excellent show showing the value of exercise, can be just as important as drugs.My wife has had pd for 7 years who does yoga as well as as other exercise and has full movement I believe because of this. However,she has spent more time disabled by anxiety and pressure in her head not pain. At least one doctor claims it is dystonia, but does not show any of the symptoms for conditions. Is this possible.
john kearney said on February 3, 2009 7:20 PM:

how about the people who got the pig cells transplanted in there brains? any updates on them One early small clinical trial beginning around 1995, involving transplantation of dopamine neurons obtained from fetal pig, showed that in most instances the implanted cells were rejected by the human immune-system. One patient showed minor cells survival up to 7-months after implantation surgery. However, although this patient experienced moderate benefits, we know from other research that the new cells need to survive in higher numbers and for longer periods than 7-months to restore brain function in regions deprived of dopamine. The pig-cell transplants would therefore require significantly improved immune-modifications on the cells to make them survive as well as human dopamine neurons do (for example human dopamine neurons, as shown in the brain sections of a transplanted patient in the program). For this reason, human stem cell derived dopamine neurons are the most promising future source for cell therapy.
Joan said on February 3, 2009 7:20 PM:

As a recently diagnosed PWP at age 58, your program gave my friends and family so much good information about the disease and the emotions that come with diagnosis...a disease that my mother, my uncle and I share. I, for one, look forward to a new administration that will provide HOPE for people with many conditions. Exercise has always been a part of my life and I will continue to make it part of my therapy. Hi Virginia: Really an important point. It is definitely an area that needs further research. Dave I.
Kathy said on February 3, 2009 7:22 PM:

Thank you so much for this program. I happened to walk in the room and see the show. My Father has had PD for 16 years and the disease just breaks our heart. I am very excited that I can watch the show and send the link to my parents in Florida. I have raised over 30k for Parkinson's Disease and will do whatever I can do to help. Thanks for keeping the awareness. Kathy, this is great. At this point lack of money is the biggest factor slowing down research. And in addition to raising money, we must all do what we can to educate the public and our elected officials about the importance of funding research! (See my previous comments on this.) - Michael J. Zigmond, PhD, University of Pittsburgh
BoB Cummings said on February 3, 2009 7:22 PM:

Just finished watching PBS & decided I better put my 2 fingers to work again. Excuse the short cuts. I am a 77 yr old PDer DXd 12/07. PD complicates my heart problems (artificial valve & pacemaker) as well as degeneratve disc disease (add sciatica, stenosis,& scoliosis). Thanks to my walker & intestnal fortitude I am still on my feet and consider myself to be a "monkey in the middle" willing to volunteer in any way I can to move science toward not having to wait for MJ Fox to wait 10 more years for the cure. Bob Cummings Horray for Bob! Dave I.
Denise said on February 3, 2009 7:22 PM:

Thanks for keeping us informed. With the possible connection between herbicides and Parkinsons would a diet of organic foods be particularly beneficial to Parkinsons Patients? If Paraquat is still being used I would imagine it would be particularly harmful to people with Parkinsons. Food doesn't come labeled with the herbicide that was used in the field. Hi Denise: As soon as Bill Langston joins, I know he'll have some thoughts on this topic. Dave I. Denise, Well, at first glance, one would think that organic foods would be the place to go if one is worried about man-made herbicides like paraquat and their role in increasing risk for Parkinson’s disease. However, one of the other compounds that seems to have some of the same effects/risks as paraquat is rotenone; rotenone what organic farmers use because it can be found in nature. So, while we have not found a smoking gun when it comes to toxins in the environment that could cause the disease, it would be premature to exclude “organic” compounds for the list suspects. For the moment we need to let the research continue and see where it leads.
Diane Sacks said on February 3, 2009 7:23 PM:

My husband is newly diagnosed with Parkinson's. I had noticed some unusual sleep disturbances for about 1-2 years before any motor symptoms (?REM Syndrome). Was the sleep issue related? Hi Diane: I think one of our scientists can best respond to this ...but yes ...as I understand sleep disturbances can definitely be part of PD ... and may well be an early warning sign. Dave Diane, I am not an MD but I know that sleep disturbances are a frequent prelude to PD. - Michael J. Zigmond, PhD, University of Pittsburgh The disorder you are probably referring to is known as REM sleep behavior disorder (RBD for short) and is characterize by patients acting out there dreams, sometimes with injury to themselves and/or their spouses. It is now increasingly clear that REB is a part of Parkinson’s disease in many patients, and it often precedes the motor features, sometimes by many years. Scientists are now using cases of RBD to study prodromal Parkinson’ disease (i.e., well before the disease becomes fully manifest) as a way to understand its earliest symptoms. RBD can be diagnosed by an all night sleep recording (offered by sleep clinics) and can be treated in its own right. - Dr. Bill Langston, founder and director, The Parkinson's Institute
walter said on February 3, 2009 7:27 PM:

hello, great documentary, very informative. i have a question please that i hope you can help me with. one day last year i woke up with my left hand index finger shaking and twitching. for a few weeks it continued. than extreme pain set in. it is now a year later and every day except when i am sleeping, i am in terrible pain. is pd associated with pain of this extreme. some doctors say it is pd others are perplexed and have no idea what is wrong with me. can you please help me with some advice. thank you very much. walter. waltmike@peoplepc.com
Kathleen Reardon said on February 3, 2009 7:28 PM:

I forgot to mention that your documentary inspired me to blog at Huffington Post about some additional observations about PD. It's at http://www.huffingtonpost.com/kathleen-reardon/im-no-michael-j-fox-but_b_163664.html
Heather Lucas said on February 3, 2009 7:28 PM:

Heard you on NPR and watched this evening. I am the primary caregiver for my mother who has PD (12+ years now), as did her brother and her father. My aunt, the youngest in the family frequently asks me about the pre-clinical markers like a diminished sense of smell and handwriting issues like my uncle and mother both experienced prior to their diagnoses. When I first began to research this disease to better understand for my mother's sake, the science paid little attention to the possibilty of it being hereditary. Today, with the genetic testing possiblities, I find myself really wondering, would I want know? Do I want to know? Meanwhile, I just keep smelling the flowers to reassure myself. And I thank you greatly for such a fabulous look at PD from all sides. So informative. My one question for curiosity's sake, was I correct in thinking I saw the "Parkinson's and the Art of Movement" developer John Argue at one point in the exercise class? Thank you again, I will have to wait for the morning to see what the rest of the family thought, we all tuned in! Hi Heather: The question you raise about the pros and cons of genetic testing are so important ... and ones we'll all be thinking about increasingly. And yes, that's John Argue ...he's great! Dave I.
Diane said on February 3, 2009 7:28 PM:

Excellent report. Couple of questions. 1. Although I do work at keeping a good sense of humor and a positive attitude, I often times cannot help feeling guilty over the fact that my husband and caregiver must carry the burdens of this disease as much, if not more, than I do. 2. I believe I was exposed to pesticides at a very early age, age 6 to 12, as I was made to work with my stepfather in the greenhouse (watering, budding, weeding, etc.) where he grew carnations. I do not know how or where to find out what if any pesticides were used at that time. Hi Diane: thanks for raising this point ... I do think it's important for spouses and caregivers to take care of themselves too ... but I also know from watching my Mom ... that athere's no place they'd rather be then by the side of someone they love. Thank you for adding this important point to our discussion. Dave I.
Jayme said on February 3, 2009 7:28 PM:

My 2 sisters have early onset Parkinsons. One was diagnosed at age 42, one diagnosed at age 51. My mom has late onset, her father had late onset. Clearly, a lot is still to be learned since it is now understood to not be familial. My sister who has had it the longest is now preparing to have the deep brain stimulation surgery. A beautiful woman, at age 51, she almost died last year. She went through withdrawal of one medicine and an overdose of another due to a pharmacists' mistake. I am most amazed at Michael J. Fox not willing to go back in time and not have Parkinsons. His acceptance of his Parkinson's is amazing. He sees the incredible good he is able to do and accepts the cost to do it - living with Parkinsons. Compare this to the superficiality of most of today's actors. MJF is a hero for my family. I am so grateful for all he is doing to use his celebrity and his disease to open the doors of awareness and to push to further scientific research on Parkinsons'.
Kathy Brady said on February 3, 2009 7:29 PM:

My father has Parkinson's and one of his most dibilitating symptoms is blurred vision. Yet the doctors have told us this problem is not related to Parkinson's. Do you know any doctors that have come across this or patients that have had successful treatment? We have been to a number of specialists both for PD and eye problems. No one in either specialty can seem to help him.
BoB Cummings said on February 3, 2009 7:30 PM:

For Sue B: I have submitted a report to the Obama-Biden Transition Committee (1/09)advocating a National Database to include voluntary patient input e.g. PLM profiles. Bob C
Robert S. Hart said on February 3, 2009 7:30 PM:

I have worked at the VAMHCS at the Perry Point division for more than 24 years. Much of that time with older deconditioned men.Getting people to exercise and to regain their strength very often works wonders for people even those well into their eighties. Finding a way to keep people motivated to continue with their exercise regimes could go a long way towards improving the health of Parkinson's cases and many other conditions. Getting people to exercise and stay with that exercise while they are young could really have an impact on our health care costs and quality of life. The costs of obesity and other sedentary related diseases is an enormous burden on our society. I have been trying hard to keep myself fit and to encourage my family to do the same. It was a very satisfying moment for me when the simple non-pharmaceutical exercise solution was presented as a promising albeit obvious way to forestall the effects of disease. So anything that can keep people exercising regularly is beneficial.
Brett said on February 3, 2009 7:32 PM:

VERY DISAPPOINTING: Frontline used to explore all sides and facets of issues in great depth and let the chips fall. This has been the third "Advocacy" episode this year and I'm losing respect for Frontline. My Aunt died of Parkinsons, I have Spinal Cord Injury and my father is in mid to later stage Parkinsons... Weather I will develop Parkinsons I addition to SCI is a toss up. However, I and my aunt were/are opposed to fetal embryo research. My father probably is not. However I was infuriated that this show deliberately ignored the subject of adult stem cells (~ 160+ cures or treatments so far.) If embryonic cells hold so much promise why have Europe and Asia not been able to rub all of the cures they have developed in our faces? Short answer, there are none. THE ONLY POSITIVE to me was the revelation that exercise may play a significant factor. I know I'll catch fire for my position but I'm tired of the "new" Frontline mixing the koolaid as opposed to presenting ALL the facts and letting the viewer make an informed decision. Or better yet providing information to let people like us find out about new possibilities we were not formerly aware of. Hi Brett: I appreciate your point of view ... Our attempt was to detail the long debate over embryonic stem cell research and to do that in as even handed a way as we could ... representing both views on this topic. We actually didn't say that embryonic is best ..it's just that's where the debate was focused. As for adult stem cells, I'm not aware of any Parkinson's related adult skin cell cures that have been advanced yet. I do think the reprogramming of skin cells that turns them back to an embryonic like state are hugely promising.But in any event, Brett, thank you for taking the time to write and voice your views. It's important. And I'd be happy to discuss this with you further if you wish to email me privately at a later time. Thank you for watching. Dave I.
Mac Justice said on February 3, 2009 7:35 PM:

I applaud suggestions that PD patients challenge themselves to accomplish new goals that require mental and physical activity. I was diagnosed with PD 2-1/2 years ago at age 64 (following in my father's footsteps) and have received much reward from picking up my high school trombone and playing with a small ensemble, despite some "motor" limitations. I have also been introduced to the plethora of adverse reactions to PD medications.
Margot Chrystal said on February 3, 2009 7:35 PM:

My oldest sister received a diagnosis of Parkinson's in 2001. After many doctors, medications and more than one false prognosis, she was told by a neurologist at a respected teaching hospital that she had a variant of Parkinson's called Multiple System Atrophy. She never had the shaking or trembling of hands---instead, she lost rapid control of her muscles, but never her mind, and died in 2006 of pneumonia. She felt that her early exposure to pesticides (she remembered playing with an insect sprayer found in the garage as a child in the 1940's) had caused the MSA. There was no history of Parkinson's in our family. From all the reading I did while she was ill, I learned that Parkinson's has many variants, or "cousin" diseases like MSA. I also believe that environmental toxins played a part in her disease.
Virginia MacDonald said on February 3, 2009 7:37 PM:

I watched with great interest the program about a family's struggle with Parkinson's disease. It was very touching. It has great personal interest to me because my mother died from Parkinson's disease at 84 years of age, 2 years ago.I was her caretaker, my father had died 30 years earler.We had no previous history of this disease in my family at all. The struggle of diagnosing and the treatment of her illness was very difficult.The part of this disease that I never hear discussed in detail are the mental problems that are suffered. All I ever hear about is memory loss , and that is frustrating , BECAUSE IT IS SO MUCH MORE THAN THAT. She suffered from horrible night terrors and crippling anxiety long before we ever knew she had Parkinson's . It was not until I did my own research that I found out that these are early symptoms. She went through a lot of pain and anguish because of this and was hospitalized in a geriactric mental hospital to completely change all her meds , ( which were over prescribed and all wrong)I could go on and on about the lack of discussion from her doctor's about what to expect as this disease progressed. It was quite simply the worse experience of my life. At the time of my mothers death she could not eat , swallow, or deal with any of it so in a matter of days she gave up and died in Hospice with her family who loved her around her, which was he kindest thing any of the entire medical establishment could do for her. When I think about this, what comes into my mind often is what happens to the Parkinson's patient that does not have the family support my mother had ? It is so misunderstood, even with the best care and a support system it can be a tragedy for everyone involved because of a lack of knowledge and ignorance. Why isn't this ever discussed? I would love to hear your view on this Thank you for the new information on this terrible disease. Respectfully, Virginia MacDonald Worcester, Ma Hi Virginia: Really an important point. It is definitely an area that needs further research. Dave I.
Rose H. Arthur said on February 3, 2009 7:37 PM:

What is IV glutathione? How does one take it and how does one get a doctor to prescribe it? For whom is it appropriate?
Mal Sacks said on February 3, 2009 7:37 PM:

I am newly diagnosed with Parkinson's (months, but now realizing symptoms that might have been present much longer). I have not ben put on meds but my nuerologist is talking about Rasagiline as monotherapy. Is there any research indicating that use of this drug can delay the need to start levo-dopa? Thank you for the program. Public awareness about how common this disease is can only help to get more support. Here in Canada, Parkinsons patients celebrated January 20 with high hopes. Hi Mal: That's the drug I take ... and my neurologist also has suggested delaying levadopa until my symptoms are more advanced. I'll let Dr. Langston add in more, but I do think that's a very common approach. Dave I.
Joseph Weinberger said on February 3, 2009 7:38 PM:

THANK YOU VERY MUCH, EXCELLENT reporting on Parkinsons. I am 60 years old, living with Parkinsons since 1991. Every day I find wonderful thing that life offers, in spite of my illness. What can I do to help others? JOSEPH WEINBERGER East Brunswick, NJ Hi Joseph: I suggest you contact your local Parkinson's association ... often organized by the American Parkinson's Disease Association. If you're interested in activism, the Parkinson's Action Network has that orientation. And many of the other organizations also sponsor a variety of volunteer efforts. - Dave I.
Mark Darcy said on February 3, 2009 7:38 PM:

Mr. Iverson, it was a program worth waiting for, my wife and I thoroughly enjoyed it. I found it quite interesting the connection with pesticides, drugs or toxins and genetics, and specifically how you tied the genetics to Africa and Norway. In my quest to find the cause to my Parkinson's, which is thought to be caused by manganese [the metal] I have traced manganese production and mining to both Africa and Norway. Could this be just a coincidence? And of course, manganese is now an antiknock additive in gasoline! I would love to hear if you have any feedback on this Avenue. Thanks again for the great documentary, regards Mark Darcy
Carl Granath said on February 3, 2009 7:47 PM:

Many thanks to those who made and researched tonight's Frontline on Parkinson's. As one who shares the Parkinson "experience" it was a very emotional hour to see how other people have found that they were afflicted and how they handled the situation. I have been impressed by the courage of Michael J. Fox and have tried to support his foundation and hope for some break through. Above all it showed how important our wives have been in caring and keeping up our spirits. Carl Granath PS My husband was diagnosed with PD 14 years ago and 3 years ago he started taking Ambrotose by Mannatech. A positive improvement was immediate. I wish more people knew about this product and that more research could be done on it. It is a glyconutritional dietary supplement that provides the 7 essential sugars to repair cells. Anne Granath
Carol Thompson said on February 3, 2009 7:48 PM:

Dave, What a wonderful program. Informative and heartfelt. You were able to convey the dismay we often feel and yet the determination of all of the people I know to never give in, never give up. While at 7 years along in my stage of parkinsons I was less affected than i am now I still manage a fairly productive day -even though I can't ski or ride a bike now. As a participant in the UMD exercise program, I think that you must moderate your exercise and not run yourself down. Once you have done that it is hard to recover-- and I found that in the long term I am more exhausted and tire more easily than before. I know that my stint there over the 4 months proved to me that exercise is important, and so is rythym and dance and motion- such as marching. most important is to know your limit. If one sways back and forth and front to back this (according to my PT's ) sets the tone of the muscles and makes it easier for them to work. They insist that I warm up (as on a bicycle} and stretch. Everytime I am tight I force myself to stretch and ssuddenly I can move again. It takes a great deal of will power and guts, but you must do it. Now that I am 14 years down the road on this journey I consider myself lucky that I am a person who is a positive thinker, has the fortitude to push things along to get to the top practitioners and researchers. I often wonder what would have happened to me were I to sit back and listen to the doctors and people who don't know the latest thinking. I also surround myself with positive thinkers. this is most important. You cannot allow a moment of self pity. ALong this line there are a couple more things I have learned that are vital that are often ommittted. 1. Protein inhibits the absorbtion of your medicines because the brain cells take it first and thus your meds don't reach the brain neurons. NIH says don't eat protein 45 min before or after taking your meds. nice, but I am down to every 2 hours. SO my solution is to find what works: nuts, chicken fish McDonalds hamburgers- tells you something doesn't it? I pad protein with carbohydrates, mask eggs and red meat with small amounts of breads, ets. veggies don't help to stop the absorption. I also find that the research on apples is true. I am better if i eat an apple a day or 2. Also,no egg beaters, they are pure protein. I get the shakes in 10 minutes. If really low- Gatorade and a coke-or a diet coke speeds up my energy/ also B12. God bless and Dave, what a blessing your mother is!!by the way where was the kitchen dance scene? Not that good? I tthink thiss program deserves an EMMY. Thanks Carol .. and my best to you and Bill. Thanks so much for your help with the program and for participating in important research. All the best, Dave
Mary Fleming said on February 3, 2009 7:50 PM:

My husband may have Parkinson and is on Mirapex. We heard the author of "my father, My brother and Me" on NPR say that he is on the drug called Rasagline(sp. Why this "new" drug. Is it working? Hi Mary: Yes, I take resagiline ...which essentially (as I understand it) helps boost remaining dopamine production ... and there is hope that it also functions in a neuroprotective manner. Bill Langston may add in more. Dave I. Rasagiline inhibits an enzyme known as MAO B. It is approved for both early and advance Parkinson’s disease. It is also being tested in clinical trials to see if it has an effect on disease progression. While it is not as powerful in as Mirapex in terms of improving symptoms, it has a very low side-effect profile, particularly when given as the sole form of treatment. There is a debate in the scientific community whether or not it actually slows disease progression, but the company that makes the drug, Teva Pharmaceuticals, has announced that they are applying to the FDA for this indication. Many neurologists start rasagiline early hopes of delaying the need for levodopa therapy, and there is very good evidence that it can achieve this goal. A very large clinical trial has just been completed to see if there is evidence supporting the possibility that it may actually slow disease progression. Hopefully the results of this study will be published in the not too distant future, so the outcome be shared by physicians and patients alike. - Dr. Bill Langston, founder and director, The Parkinson's Institute
Miriam Lapp said on February 3, 2009 7:53 PM:

Thank you for this informative and deeply moving documentary. Both my father and grandfather had PD, so I was particularly interested by the segment on the possible genetic link. One of the many puzzling things about this disease is how it affects different people so differently -- even within the same family. Both my dad and my grandfather started developing symptoms in their mid-60s. My grandfather's symptoms were fairly mild, and he was able to control them with medication until his death from other causes at the age of 90. In my father's case, the disease progressed much more rapidly (despite the fact that he had always been physically very fit), and included not only physical symptoms (tremors, freezing, etc), but memory loss and eventually, dementia. When the medications finally stopped being effective for him, and it wasn't long before muscle rigidity prevented him from swallowing. He died not quite a year ago, just three weeks shy of his 76th birthday. I do hope your program will help move us closer to finding a cure. (PS -- I also found the part on the dance therapy very interesting. during my dad's final weeks, when comprehensible speech was almost impossible for him most of the time, we were amazed to discover that he could still play the harmonica remarkably well -- clearly, that part of his brain still remembered how to work!) Hi Miriam: This is a great point ...it does vary so much from person to person ...even within the same family. And it is remarkable how something like your Dad's music ability can be sustaining. You might be interested in reading Oliver Sachs book "Musicophilia" Dave I.
Sara Pessel said on February 3, 2009 7:54 PM:

We stumbled upon this program by accident. We weren't sure we really wanted to watch it b'c - at times - we don't want to acknowledge what's coming down the road. But we are glad we watched it and appreciate your work to bring this subject out. (Unfortunately, I don't think we can share it with the grown children as they might be too scared for their own future.) I believe organized advocacy with attention by high profile citizens (like Fox) can propel PD forward faster and keep it in the limelight on Capitol Hill so everyone ... keep squeaking those wheels! My spouse has had PD for ~7 years and is aged 80. He exercises at the gym at least 3x/week and his neurologist says he's doing remarkably well for someone w/PD for 7 years and Dr. is convinced the exercise is a key ingredient. It would be great to have a short video explaining what it's like living with PD or caregiving for a PD patient as many (i.e., folks in the office, extended family) have no idea about the complexity of our lives and the adjustments necessary. It's difficult to explain the ups and downs of PD to others and they wouldn't sit to watch an entire program. Re a personal story: awhile back the dr. changed my spouse's meds and he had a severe reaction; when I called out for the day b'c of the problem, my boss made a comment alluding to me lying to take the day off! BTW, how long will this program be online? Hi Sara: Thanks for participating. The program will be online indefinitely. And good idea about doing a video designed for caregivers and their families. - Dave I.
Mark Di Giorgio said on February 3, 2009 7:57 PM:

Very well done program!! I was unaware of the strong link between exercise and dopamine production. I have two questions: (1) my mom is 82 and has been diagnosed with Parkinsons for 6 years,but she does not have any shakes or twiches. She has the Parkinson's-induced dementia. Is there anything in the pharmaceutical community that has been proven to help Parkinson's-induced dementa, and (2) my mom has also been diagnosed with Lewy Body dementia ...is Lewy Body dementia caused by Parkinsons, and can anything be done for that. She is seeing a wonderful doctor and is on Sinemet and the Exelon patch, but I was wondering if there is anything newer and perhaps better in terms of treatment? Thank you very much!
nancy said on February 3, 2009 7:57 PM:

My son,now 50, has had Parkinson`s since he was a teenager. He`s had 2 thalamotomies to stop some of the shaking he can walk a little with a cane but falls a lot.
Kent Kluver said on February 3, 2009 8:00 PM:

Dave, Your program is the only Parkinsons program I have been able to watch. As a PD sufferer, I can't usually bring myself to study the disease; it's too depressing. But your show gave me a feeling of hope and energy. Thank you, thank you, thank you. Kent Kluver Thank you so much Kent! - Dave I.
Orlando Vallone said on February 3, 2009 8:02 PM:

Dear Dale and All Participants, Outstanding program and fantastic summary in only one hour of such a complex disease. I am 54 yrs and a caregiver to my mother that has had it for 3 yrs, treated with dopamine and antagonists but with lots of execise (massage, almost daily walks, and acupuncture for some pains). Altough still diagnosed as a mild case, she seems to have had very good response from drug and exercise therapies. Thanks for the program and congratulations. Hope all research continues to bring about a faster response on some new drugs and the common or more effcient path towards a stem cell treatment if possible. thanks for the opportunity. Orlando vallone
d said on February 3, 2009 8:04 PM:

I learned a lot about Parkinson's from this documentary. It reminded me of my grandfather who had the disease, but also my father, who suffered for years from a very rare disease called Huntington's. His sister has it, his mother had it, and we believe his brother had it before he passed. While I certainly do not intend to discount the seriousness of Parkinson's, I wish all diseases would receive more attention, support, and funding. I commend Michael J. Fox for staying true to himself, not denying his disease, and working so hard to change other's lives. I only wish Huntington's would get the same support, but there has been no celebrity with it since Woody Guthrie. My sisters and I each stand a 50% chance of inheriting the disease/gene. I did like one of the people in the show said- I have truly lived my life to the fullest, have no regrets, several degrees, and a wonderful child. Hi d: This is a really good point ... Huntington's is indeed deserving of more attention .... and obviously it's a very serious disease. And while Michael J. Fox has done a magnificent job for PD ... and Jerry Lewis helped galvanize interest in muscular dystrophy ... it does seem unfair that Huntington's doesn't yet have that kind of champion. Thank you for raising this important point. - Dave I.
hilary blue said on February 3, 2009 8:04 PM:

A very stimulating program! Thank you for reawakening my enthusiasm for the search for a cure. I have had Parkinsons for about 35 years, although hindsight suggests some symptoms as far back as 1965. It took 9 years of doctors in England, South Africa and Israel to get a definite diagnosis. I was pregnant with my 2nd child and she turns 26 on Friday. I have been taking sinemet for 25 years. and it is finally beginning to lose its efficacy. I have tried I think every other medication that has ever been used to treat PD and am now looking into DBS - which was just mentioned in passing in your program. It so happens that i am moving to Madison, Wisconsin later this year, and you interviewed someone in Madison who is doing research - and actual trials, I believe - in the use of stem cells as a treatment, not just a theory, for PD. I would like to contact the people doing these trials, and perhaps become involved. I would also like to know if having DBS would preclude me from having stem cell treatment. Hi Hilary: You're referring to Clive Svendsen at the University of Wisconsin whose exploring whether stem cells can be used to deliver growth factors to the brain to stimulate further dopamine production. But his work is not yet in human trials. I don't know whether having DBS would preclude anyone from receiving some form of stem cell treatments in the future. But I think it's safe to say that human trials for stem cell treatments of any form are probably a ways off. - Dave I.
Judi said on February 3, 2009 8:06 PM:

Great piece. Have you heard anything more about when President Obama will reverse Bush's ban on Federal funding of embryonic stem cell research? I thought it would have been signed by now. Hi Judi: It's an interesting question ...he may in the end decide to let Congress pass a new piece of legislation and then sign it into law rather than doing it administratively. We shall see! Dave I.
Vivian Branschofsky said on February 3, 2009 8:06 PM:

Exercise and an active lifestyle, I'm sure, has much to do with my slow progression. 7 1/2 years diagnosed, 54, female. I can do everything I did before with the help of meds. I totally enjoyed your show and my husband noticed Michael Scwartzchild in the credits. I was involved in a study with him and it was a great experience. Please keep up your good works as well as educating the public. I feel very hopeful and fortunate and will continue to do so until a long way off in the future.
Nicholas said on February 3, 2009 8:09 PM:

I feel ashame of writing such a mail. I am 35. My left hand trembles since my childhood. Through the years, I succeeded to accomodate and hide it considering that it was an essential tremor (according to my doctor). However, since a few months, I tremble more and more. Now, it is the right hand and the legs as well. It is really impressive how fast it goes. Since 1 months, I feel a tingling sensation going trough my body from the back up to the fingers and the feet like electricity. The sensation even prevent me from sleeping. I am scared of the diagnosis but futhermore I do not know where to go for having some tests (I recently arrived to the US for work and I have no doctor in the US). I am in the Philadelphia area. Is there a clinic or an hospital and maybe a doctor that you would recommand in this area. Is this tingling sensation one of the symptoms of PD ? Thank you in advance for your answer and thank you for this program. You show great courage in writing ... and you're to be applauded for reaching out. So please don't feel any shame about telling your story. I'm sure there are terrific doctors in the Philadelphia area and I hope one of our researchers can chime in with their thoughts. Dave I.
Kim McChesney said on February 3, 2009 8:12 PM:

Dave , your program was very well done although I wish you had done some research on DBS and provided the audience with what that could possibly do for a Parkinson's patient. I was diagnosed with Parkinson's at the age of 40 and I had a mother who had Parkinson's for 11 years before she died. She was 44 when she was diagnosed and 55 when she died. I have 4 children, ages 17, 16, 14, and 12. I have tried to not be defined by this disease. Some points that I think are important - exercise!!!!!!!! I have been exercising since i was diagnosed and while I think it makes a big difference physically, I think it makes an even bigger difference mentally. It has helped me immensely. I even took on the challlenge of walking in the 60 mile 3 day breast cancer walk this past October because I believed that exercise was essential to my continued success in battling this disease. I followed all of the guidelines for training for the walk and when the time came I was able to easily finish the 60 mile walk. I would gladly do it again, I am also going to have the DBS surgery in June and I hope that perhaps you follow up this story with one about DBS and what it can do for Parkinson's patients. Thank you for putting together this special. The more people know, the more help we can get to find a cure.
Jennie said on February 3, 2009 8:13 PM:

What a fabulous program!!! My dad was diagnosed with Parkinson's in 1953 at the age of 34. My mom was pregnant with me at the time. He lived until the age of 68. So much of what you presented brought back so many memories of what this disease is and does. Dad participated in 2 experimental surgeries at Mayo Clinic (Minnesota) which provided temporary relief. I still contribute annually to our local Parkinson's society in the hope that a cure will be found. Let's hope that the changes in Washington will result in the easing of stem cell research restrictions. This show deserves an EMMY!!!! Just fabulous, touching, and very heartfelt. Thanks for sharing so much of yourself in order to educate all of us! In the meantime, take good care of you. Jennie That is so kind of you Jennie ... and thank you for doing the work you do! Dave I.
Norma Semling said on February 3, 2009 8:15 PM:

The program was interesting, but as a young onset Parkinson's patient who deals with the "ups and downs" as I try to handle my daily tasks, I felt it would have been more interesting to see just how a parkinsons patient handles those tasks. It was mentioned that from the time you wake until the minute you fall asleep, parkinsons is on your mind. How true that is.What I would like to see is a broader awareness to the average person that does not understand or even know what Parkinsons is. I am constantly seeing and hearing about so many other diseases, and seldom hear about Parkinsons. People need to know so they can better understand us and not feel sorry for us. thanks Norma. We did try to give some sense of daily living with our profile of Tom and Madeleine Shearer ... the couple you see talking about some of the challenges including getting your shoes on ...but you're right, the young onset experience is not one we were able to include. - Dave I.
Donna Snow Robinson said on February 3, 2009 8:18 PM:

Hello, Dave. I have fond memories of our days in graduate school at Indiana University's Department of Telecommunications. I am proud to be able to say "I knew you when...", and I'm so happy that your smile and your spirit seem as beautiful as I remember. Bless you for your courage and the lessons you are living and bringing to our conscious and our culture. If this arrives in a format carrying my email address, I would love to hear from you. In any case, I wish you Godspeed. Donna Robinson Hi Donna: How great to hear from you! Thanks so much for writing and watching. more later... Dave I.
thomas m. hurst said on February 3, 2009 8:21 PM:

hi dave, I noticed the Bates tee shirt. I'm class of '74. Who went to Bates in your family? I was diagnosed with early onset PD in 2000. I had DBS in Feb 08 at Deaconess/Beth Isreal MC in Boston. The past year has been fantastic! I was really hoping you'd have more data about DBS. My mother had PD in her 70's and died at 83 in 2006. I've been told that while a female can pass PD along to her offspring (me), a male (me) can not pass PD along genetically (to my two dauhters). Any new word/science on the genetics of who can/cannot pass the gene along? Hi Thomas: Terrific ...I'm so glad you noticed the Bates T-shirt! I wore it because my daughter Laura went to Bates (class of 2001) ... And by the way she's now starting an exercise class for people with PD! I hope one of our scientists can pass along more information on the genetics question. Dave I. Of the genetic forms of parkinsonism that are well established, there are none that are sex-linked, so this not correct. Some genetic forms are dominantly inherited (50% of children will get the disease on the average regardless of sex) and some are recessive (two carriers have to marry, and then the risk for children is 1 in 4, again regardless of sex). Our website (www.thepi.org) has more for those who are interested.
Della said on February 3, 2009 8:21 PM:

Is there any evidence that general anesthesia might be a factor or cataract surgery. Della, As a clinician, it is very interesting to me that would bring this up. While there are no scientific studies on this subject, I have personally seen several cases in which the parkinsonism developed after cataract surgery (which included general anesthesia). While a link is far from proven, we continue to collect such cases in hopes they will give us some clues about the disease. - Dr. Bill Langston, founder and director, The Parkinson's Institute
Vicky said on February 3, 2009 8:24 PM:

Thank you for the courage to do this documentary. The information on the complexity of the disease, the research, and present acceptable treatments will be of so much value to rural viewers. My father lives in a small rural area. His doctor has consistantly refused to discuss symptoms or treatments beyond L-Dopa. This doctor discourages my father from going out into public places. My father is convinced he risks being arrested for being drunk because of the uneven gait associated with the PD. (Have people been arrested for PD?) I know my father now feels self-conscious and isolated. Hopefully this film will help. Just wish every area had the dance program shown in the film. My father loved to dance when he was younger!
Gary Crosby said on February 3, 2009 8:24 PM:

I found Mr. Iverson's comment about time being both friend and foe to be most insightful. While the race is on, the people I have met on my Parkinson's journey have been most inspiring. And, I have come to agree with Michael J Fox's logic that having this disease is a gift. It is a gift of hope and optimism. Why? I live in the US at the dawn of the 21st century. I no longer suffer from invincibility syndrome. I have a newfound appreciation for the now. I understand that I am not in control. My faith has been deepened. I have a sense of mission. I am having fun. I am healed. Hi Gary: so well put ... thank you. Dave I.
Mollie said on February 3, 2009 8:28 PM:

thank you for an informative, moving and insightful documentary.I am 74, and with slowly progressive Parkinsons D. for 3 years. No other family member has had it. I had a concusssion /car wreck 20 years ago.... how significant is a head injury in the development of P..... also is there any connection between using over the counter meds such as Glucosamine/Choondroitin/MSM which I take for osteoarthritis... no FDA control to ensure(hopefully!) purity control. Lastly, I take Sinemet25/100... does one develop a tolerance to this medication causing it to become less effective? Hopefully President Obama will quickly reverse the stem cell ban, after all... why is it much different ethically from taking a brain dead (sadly) person off life support and harvesting the organs for the good of other humans? thank you again. Hi Mollie: One of our docs should respond to this ... but yes, I think it's generally understood that the drug becomes less effective overtime, in part because people tend to need more and then the side effects can be as problematic as the condition... But hopefully bill Langston can add more.Bill? Dave I. Two comments: 1. There are now a number of well done epidemiologic studies indicating that significant head trauma does increase the risk for Parkinson’s disease, and that is now being studied in more detail in many labs, including our own. 2. While Sinemet may lose it’s effectiveness over time, that is typically not the major problem. Rather it is the side-effects that develop over time that are the biggest concern. Early management early in the disease is very important in avoiding these side-effects. For this reason, having a physician well experienced in Parkinson’s disease management is very important, particularly in the early years of treatment, to avoid problems later on. - Dr. Bill Langston, founder and director, The Parkinson's Institute
Florence Sandok said on February 3, 2009 8:38 PM:

We were encouraged by our neurologist to remove proteins from meals during the day..eating only protein at night. This has helped a great deal. The proteins interfere with the amino acids.. and decrease the effectiveness of the medications... This in addition to timing doses of medication with a pill timer and exercise.. all have been very helpful and improved functioning.More discussion should be centered on these factors. as improving symptoms. Hi Florence: It's a very useful point ... and it's something we need to learn more about. Later in the week ... we'll try to have other experts add in to this point. Thanks for watching! Dave
Brigid Gray said on February 3, 2009 8:42 PM:

I just finished watching your program. My mother suffers from Parkison's, suffer, being the operative word. My father was a NY State Senator and Mayor. He was a dynamic force in our lives and her partner for over 50 years died almost two years ago. I know he would have stopped at nothing to help find a cure orgain support for the research. My mother keeps waiting to get better before she will do anything ouside her home. She also gets shortness of breath that elevates her blood pressure, she stares off and thinks she is going to die. she has a good heart and lungs and there seems to be no trigger for these epidsodes. She takes clonazapan to relieve this, but even her neurologist isn't fond of this treatment saying it works against the sinemet and the attempt to increase her dopamine levels. Could these attacks be related to Parkinsons? She also has facial masking, and is eambarrasssed about her speech, often saying she can't talk. She is unsteady in her walking and in the winter doesn't venture out. I am trying to maintain the 24 hour care that she requires and encourage her to take advantage of all that she can, but she seems to want to do less and less. I am devastated for her and don't know how to help her. Working, taking care of four kids and trying to help her, I don't feel I am doing a good job for anyone. I promise her to do everything to help her, but I don't know what else to do. Your show was enlightening and I hope that it inspires people to want to contribute more to research, but am sad to think it may be too late for her. She did also enjoy Michael J. Fox's book,when she was reading more. I am praying for all who suffer form this terrible disease.
Jeffrey Hildt said on February 3, 2009 8:42 PM:

Thanks for a great show. You really seemed to cover all the bases for a change. I am about 8 years post-diagnosis but still not too bad. Still just a tremor in one arm. I blame George Bush and the religious right personally for stalling the research, and the search for a cure. It is complete hypocrisy to show such concern for unborn and not viable (they are being discarded, after all!) fetal tissue at the very real expense of actual human suffering on such a large scale. Are they also against organ donors? I am angry that the last 8 critical years have been lost for so many afflicted lives while these obviously uncompassionate people tried to legislate their own personal religious beliefs. Not a single life is taken by stem cell research, but half a million PD sufferers are suffering needlessly without the cure that will surely come. There, now I've made my tremor worse. Sorry to rant. Thanks for an excellent show. Bless you.
Paul DaEstrela said on February 3, 2009 8:46 PM:

I would like to thank you for doing this documentary on PD. I have found that PD is a disease that most people no very little about. I am 47, seven years ago I noticed that I was having troubling doing some things that I took for granted, reaching in my pocket to get my car keys, tying flies to fish with. That was the start, slowly as time goes by I travel farther down the PD road, waiting to see what,s around the next bend,in the mean time I use my other hand to get my keys, and I found a tackle shop that sells flies for next to nothing, Cheers. Hi Paul: That's such a great story ... if you have trouble tying flies ... buy more! Keep fishing my friend! Dave I.
Andy said on February 3, 2009 8:49 PM:

Just wanted to say thanks for a terrific program -- could have used another 30 minutes. Some of the effects of PD aren't pretty, but your show was unflinching in its portrayal of life with the disease. Denying the reality of it benefits no one. Most of the caregivers depicted were family members -- spouses and such. Are there any resources for institutional aid for PD patients? Or assisted living for PD sufferers? My dad was diagnosed recently, and as a 71-year-old divorce, lives alone for now. My brother and I can and will help as the disease progresses, but we still need to hold down jobs. Thanks and keep up the good work.
Ana M. Calderon said on February 3, 2009 8:53 PM:

Great documentary, Thank you for keeping us informed. My brother (70) suffers from Parkinson’s; while the tremors are very well controlled with medication his dementia is rapidly increasing. He lives in Guatemala City,Guatemala but because he does not have an income and does not have insurance I am financially responsible for his living expenses and medical treatment. Because this type of medications are expensive I can only afford the basic ones (Sinemet CR, P-K Merz and Seroquel) but nothing to help slow down dementia. I live in Georgia and contacted the Parkinson’s Association but unfortunately it was not helpful. I am trying to find research programs that my brother could volunteer for. I am US citizen but he is not. Are you aware of any research program that he could participate in here in the US? Any additional information on medications, treatments, drug trials, etc. would be highly appreciated.
Carol Popelka said on February 3, 2009 8:59 PM:

Thank you for a very human look at PD. Both my parents died from complications of the disease. Dad lived with PD for 28 years, due in great part to the great care he received from my mother and an army of angel home care givers. Mom was diagnosed with PD within a year after Dad's death. My sister coordinated their care while working fulltime. They both taught us how to live with dignity and grace in spite of the terrific challenges of the disease. You captured many of the little details of living with PD that most people don't know about. (And Dave, I miss seeing you on Wisconsin Public Television, but congratulations on being producer for an informative and sensitive "Frontline" program. Best wishes to you as you face your own challenges of PD.) Thanks so much Carol ... I miss Wisconsin too! Dave I.
Sue Bridson said on February 3, 2009 9:08 PM:

Greatly enjoyed tonight's program. My mother had Parkinsons, developing it in her late 70s. She died at 87, probably due to heart problems. I am interested, of course, in learning of the new genetic component. Regarding the FRONTLINE program, I was very impressed with the Nova Scotia surgery technique (which worked), but it was followed by the Colorado techniques which didn't, then no further discussion of the successful Nova Scotia research. What is happening with that now? I won't complain anymore when my husband says "it's time to walk" I need an address for reaching President Obama to encourage his support for reinstating stem cell research now!
Larry Johnson said on February 3, 2009 9:16 PM:

Very informative progrsm! Have there been asny studies done in which agent orasnge , as used in Viet Nam, was studied regarding it's relationship to Parkinson's? Iwas nn Viet Nam in the late sixties and was diagnoed with PD in 03 -no famiy history.Do Viet Nam vets experience a disproportionate number of cases of Parkinson's? Thank you Hi Larry: I don't know the answer to this Larry ... but it's a really interesting question ... I will try to draft a researcher to respond to this later this week! Dave I.
Frances Lunnney said on February 3, 2009 9:33 PM:

Excellent show, a powerful blend of personal story and science. Hi Frances! I'm embarrassed that I missed this one last night ... our mutual friend Sally pointed it out to me. Thanks so much for watching! Dave I.
Tina said on February 3, 2009 9:34 PM:

Mr. Iverson- Thank you for this program, and especially for sharing your personal experiences with PD. I especially found the segment on exercise and Parkinson's to be informative. My dad was diagnosed with PD about five years ago. His mother had PD as well. My dad was told by his neurologist that the likely "trigger" for his Parkinson's was a severe TBI he suffered 17 years ago. My dad's neurologist refers to his PD as traumatic induced Parkinson's- similar to Muhammed Ali's PD. I have heard that research is showing that TBI's are increasingly correlated with PD. Can you or one of the MD's speak to this issue? Thanks. Tina, I am not an MD, but I do know something about this research. Your dad's neurologist is correct, there is reasonable evidence that Traumatic Brain Injury can be a risk factor for Parkinson's disease. Unfortunately, it usually takes years for PD to develop to the point where it can be diagnosed. Moreover, as my colleague Bill Langston has pointed out many times, PD often requires more than a single factor to initiate it. That means that something like TBI can occur and appear to have no consequences only to provide one of the triggers for PD some years later. In this regard, I think we must be particularly cautious about the exposure of young people (whose brains may be more vulnerable and older adults) to conditions that can cause TBI. I am thinking here about everything from cheerleaders and gymnasts to high school athletes to soldiers in combat. I believe that we are must too insensitive to the long term consequence of TBI in such groups of individuals. - Michael J. Zigmond, PhD, University of Pittsburgh.
BEVERLY said on February 3, 2009 9:36 PM:

My Dad was diagnosed with PD 5 Years ago,he is 74.His condition has gotten worse in the last 6 months.Walking for him now is a challange,and his legs continously freeze.The worse part is that he is up 6-7 times a night,falling,hallucinating,it has become a nightmare for him and my Mom.His doctor can not seem to get his levadopa dosing at a level that can help.We have noticed a decline in his mental abilities as well.I hope through your documentary people will become aware of PD and the research needed.PD is a family disease,and we pray for strength to continue to help my Dad on this journey. Hi Beverly: I apologize for not getting one of our experts to respond to this before the night was over. These are important questions. We'll try to get that done this week. Dave I.
Lynn Bishop said on February 3, 2009 9:36 PM:

While I do not to my knowledge have Parkinson's, my father was diagnosed with it late in life. However, during the course of my life I've had bouts of hand and/or head & neck tremor. A few decades ago hand tremor responded to improved diet, especially the addition of B vitamin supplements, and totally disappeared. I've since made it a point to continue to improve my diet, eating abundant protein, vegetables and fruit, and taking supplements, and my husband and I grow vegetables organically. However, about a year ago the hand tremor again reappeared and, over time, I noticed a sense of continuous "internal" tremor; it's difficult to describe but it felt as if my nerves were "zinging" all the time and my muscles were undergoing very fine contractions. Knowing that the proper fatty acid component of nerve sheaths is critical to nerve function, I decided to add some different foods to my diet to see if they would help. Specifically I started eating raw sunflower seeds and started using lard for cooking food and as an additive to soups. I wondered whether animal fats especially might be needed for proper nerve function. Within literally two days the tremors had decreased in severity and now, approximately a month after adding these foods, the tremor and the "zinging" sensation are essentially gone. While anecdotal evidence is no "proof" of anything, one person's experience may lead someone else to experiment. Genetic tendencies towards malfunctions can be turned "on" by environmental toxins and other unrecognized triggers. Conversely, providing the body with the proper nutrients can prevent that genetic tendency from expressing. The body has absolute requirements for certain nutrients. Perhaps the oils in sunflower seeds and, more importantly, the lard provided certain fatty acids that the nerve sheath requires in order to function properly. Exercise and avoidance of environmental toxins are important, but if the body does not receive the nutrients it needs, it simply cannot build healthy tissues. Drugs may temporarily help us compensate for the lack of needed nutrients, but ultimately, unless the body receives the nutrients it needs, it will not be able to repair itself. I don't know whether my own experience is germane to your excellent program on Parkinson's, and I don't pretend to have any answers. But I do know the body has a seemingly miraculous ability to heal itself as long as it receives the nutrients it needs. Perhaps people with Parkinson's would benefit from a very careful review of their diet and supplementation with appropriate fatty acids to ensure their nerve cells and myelin sheaths can regenerate. Every person is different, so adding these specific nutrients to the diet may not help someone else as they have me. However, thinking about the nutritional component to nerve health may suggest an avenue of approach. Thank you for sharing your story.
chris Cullina said on February 3, 2009 9:47 PM:

Watching the last 8 years of shameful posturing of the Bush administration while Americans have suffered always begs an admittedly loaded question that no one ever thought to ask our departed President: "If one of your daughters contracted an incurable disease like Parkinson's (or say HIV/AIDS) and you heard that a cure had been discovered in a foreign country that had been derived from the study of embryonic stem cells, would you allow her to take the antidote?"
Bonnie LaSota said on February 3, 2009 9:56 PM:

I was diagnosed with PD two years ago. Your documentary added much hope to my feelings of despair. I am happy to know that there are many things I can do to help myself. I am now, after two years of living in denial, ready to keep this disease from ruling my remaining time on this earth. Thank you for your time and effort. They have inspired me to move forward. I have a question: What is "static" Parkinson's and how would I know if I have it? Bonnie Hi Bonnie ...I'm glad the program made you want to engage with what can be done ... I think we all need to feel like there's something we can do. I don't know about "static" Parkinson's. I'll try to get an answer for you later this week. Dave
Ed Folga said on February 3, 2009 9:59 PM:

Excellent program,being diagnosed for over six years, I will have to take heart to my neuroligist and exercise regularly. Although at 66 I still work 6 or seven days a week, play golf and believe that a positive attitude can greatly help you each and every hour of the day. I strongly recommend that if you have or have been recently diagnoed with Parkinson's, get involved and get into a study program. These researchers need us to prove or disprove their work, we can all help, get involved. Hi Ed: It's a great issue to raise ...we really do need people to participate in these trials. Thanks for making that point! - Dave I.
Dave Iverson said on February 3, 2009 10:00 PM:

This is a message from Dave ... I'm going to bow out of the conversation for an hour to watch the show here on the west coast with my family. I have to watch with my Mom, you know! Back at 11:10pm PST. I look forward to continuing the discussion then! Thanks, Dave I.
Caryle said on February 3, 2009 10:12 PM:

What a wonderfully touching and informative program. I am 45 and was diagnosed with Parkinson's 5 years ago. I have not taken the disease lying down; I have learned to ski, started a young onset support group in the San Fernando/Conejo Valley area North of Los Angeles, have done many fundraisers, and when anyone asks me how I am doing the answer is "GREAT". I do as much with my mind as I can by doing crossword puzzles, Sudoku, and most impotant of all I work full time at a job that is very mentally demanding. It is one thing that this effects my body but I am determined not to let it effect my mind. I have one "complaint" about the Parkinson's Support community, there are very few programs (exercise, yoga, dance, etc) that are made available to young onset patients as many of us work during the day when these types of classes are available. My hope for all of us is that now that Bush is out of the white house, stem cell research will blossom and a cure for this disease will be found. Take Care and Stay Healthy!! Hi Caryle: Thanks for making these points ...I'd love to see more research done on the Sudoku question! Dave I.
Helen Pletsch said on February 3, 2009 10:21 PM:

Thank you for an excellent program. I was diagnosed in 1985, when I was 44 years old. Now, at 67, I have lived with this disease for going on 25 years. For about 18 of those years it was just a nuisance, something that I could put up with fairly well. For the last several years, it has become more than that. However, about 3 years ago I had Deep Brain Stimulator Implant surgery, which improved my situation a great deal. My main problem now is that I fall very often. I would like to exercise and do yoga to improve my balance, but the fact that I have had 4 hip replacements on one side and one on the other, and have a torn rotator cuff in my left shoulder, means that I can't bend in very many directions. This makes doing anything like that rather difficult! Again, thanks for the fine program and the opportunity to discuss with other people who are in the same boat PD -wise!
Susan Z. said on February 3, 2009 10:29 PM:

Just finished watching the West Coast airing. Thanks for your informative and timely documentary. I have lived with dystonia for over 20 years now. My body looks and acts much like individuals with PD, and have had a similar course. I know the two are closely related, both are neuromuscular movement disorders involving dopamine and the neurotransmiting system in the deep brain. Do you or the MD's know what makes the two distinct from each other, and to what degree if any, will PD research be transferable to dystonia? Dystonia is an orphan disease, and we don't get the research budget that research for PD does, how much hope can I have from progress in PD treatment?
Jim Wright said on February 3, 2009 10:38 PM:

I am a male "early-on", diagnosed 2 years ago at age 54. Best regards to David Iverson et al for a well written and produced compassionate "real-life" production about a challenging disease that often times can open doors to the real meaning of life: serving others.
Angela Rex said on February 3, 2009 10:39 PM:

I managed to have downloaded the podcasts for the Forum and Fresh Air discussions of this show, and have just finished watching it online. This has made my day a flood of memories, as during college I helped my great-aunt, whose husband was in the late stages of PD. Her health was poor as well, and I always felt she stayed around purely to make sure he was taken care of (she died within a year of his passing). The dignity and devoition she gave him as he deteriorated has always been something I felt priveleged to witness. For some of you who have further questions on DBS and other treatment discussions, there is more information in those radio interviews I referenced above. God Bless.
Jerry Schatz said on February 3, 2009 11:06 PM:

Excellent, informative and inspirational program! We need more "positive attitudes" like this broadcast. I was diagnosed with PD 25 years ago, at age 42. I found that my athletic background and recent marathon running experiences helped both physically and emotionally as my PD progressed. A career change from sedentary to active, 24 years ago helped me retain my mobility and enabled me to work to age 66. Since retiring 2 years ago, I still enjoy walking, bicycling and various other forms of exercise. Never give up! Hi Jerry: Thanks Jerry ...and thanks for the model that you're providing ...really impressive! Best wishes to you. Dave I.
Dave Iverson said on February 3, 2009 11:07 PM:

I'm back! Keep those questions and stories coming ... we'll stay live for the next hour. - Dave
Rod said on February 3, 2009 11:20 PM:

Has any link been associated with parkinsons and Lyme or Babesiosis infections? I've been diagnosed with Lyme and Babesiosis (a malaria type parasite) by positive lab results, but I seem to have symptoms of parkinsons. Such as, numbness,tingling,pain and a buzzing sensation in my hands feet and buttocks. I've also had muscle contortions of my left hand and left foot. And I have vocal and muscle jerking tic (myoclonus). What do you think of these symptoms? Are they parkinson characteristics? Thanks, Rod Hi Rod: Really interesting questions ... our experts have signed off for the night ... but we'll see if we can get you an answer later this week. Thanks so much for watching. Dave
Susan said on February 3, 2009 11:20 PM:

Having lost a beloved [much older] boyfriend to Alzheimers a few years back, and now having a friend MY age-53- who has PD, my favorit part in the show [just ended 10 minutes ago here in NV] was the part showing DANCE helping! This is where I would like to offer some of MY services: I've taught many styles of dance since I was in 6th grade when my 1st dance teacher's doctor told her: "Delegate!" and she asked me to teach. Can honestly say everything I've read about playing the same EXACT recordings of music that made me smile in my earlier years STILL set my hormones tingling like a high school student, Follows that music and movement will aid ANYone who's been diagnosed; ...enjoyed the experience of having taught sitting down dances myself with very fun and pleasant results. Still dance; still teach [ok, did the 20 yrs singer-dancer full time thing too]; also included teaching "sitting in a chair steps" be a 'voluntere-by-choice' audience participation finale-many folks joined in!!!- which has nursing and retirement home residents getting physical: delightfully fulfilling to me, and it had to make them feel good too. .....all the best- Susan thanks Susan! Keep dancing! Dave
Tammera said on February 3, 2009 11:30 PM:

The program was wonderful. I am 48, a former college teacher, first diagnosed with MS (took all the drugs, wrote grants for them), then in 2005 is was diagnosed with a rare genetic disease called Hallervorden Spatz (which my former neuro described as a cross between als and parkinson's). My neuro said there was nothing he could do for me, but he would provide "supportive" treatment. I tried to go to support group meetings at the local Parkinson's Chapetr and the ALS group. They said NO. If adults could have a "make a wish" foundation, I would ask to spend 1 hour of my life with Michael J. Fox. The neuro system and the "support groups" have beaten me down. Hi Tammera: I'm so sorry you've had those experiences ... Michael J. Fox is inspirational ... I hope you'll find a way to get the support you need and deserve. And I'll see if one of our experts can respond later this week. Dave I.
Mariana said on February 3, 2009 11:35 PM:

It was very encouraging to see the study of the monkeys who exercised and resisted PD. I was diagnosed with PD in 2001. I have always loved swimming, and now take a water arobics class three times a week. When I'm in the water, I have total freedom of movement, as if I don't have PD. Plus, our heads are always out of the water, so it's a very social time, talking, joking, laughing as we exercise. I find a warmer pool, 84 degrees, is just right to avoid getting chilled, and a moderate pace in the class is also important to keep breath and heart active but not exhausted. Seeing people dancing and briskly walking was also encouraging. All these things have been fun throughout my life, and they still are. It was helpful to see exercise directly linked to PD treatment.
Sonja said on February 3, 2009 11:49 PM:

Dave, What a wonderful job you have done. It was informative and told with love and optimism. My Father, My Brother, and Me is an inspiration to me. I was diagnosed 4 years ago this coming March and I still have only told a few of my friends. It took me a year before I shared my diagnosis with my family other than my husband.I felt embarrassed to have the disease and I felt very sad. I am doing better now. One of my doctors said,"Sonja, stop worrying and go live your life. I am trying to do that. Do you have any comments on when and how to share ones's diagnosis of PD---or share it at all? Thank you very much for this production. Hi Sonja: this is such an important question and so very personal. Some people I know prefer to keep it private. They feel that they don't want to be defined by the conditino or have people asking "How ARE you?" all the time.Perhaps because I've been on radio and TV for so long ...perhaps because I'm talky by nature ... I chose to be quite open early on. There was one exception ... I didn't tell my Mom for the first two years. I just felt she had enough to worry about and had been through this too many times. But when I decided I wanted to do the film, I obviously had to tell her. And the fact that I was doing the film, actually made it easier to talk to her ... I think it conveyed to her that I was doing something that might be of some use ... and that I think helped her feel better about my own diagnosis. But in the end, this is so personal. I guess I would just say to look into your heart and think about what feels right for you. Are there people you want to have this knowledge? Are there people whose support would be helpful? I'm no counselor ...just like I'm no doctor ...but trust yourself, I'd say. My very best wishes as you sort this through. Dave I.
Harry Freis said on February 3, 2009 11:53 PM:

Dave, a wonderful, up-lifting show. Thank you. My wife, Jessie, now 68, is in her 10th year of Parkinson's. She's a brave, lovely lady, fighting the good fight, but the disease is relentless. Her obvious need is more physical activity. Your show reminded me of its importance. I have checked around with a number of PD groups in the East Bay (we live in Orinda) for a regular program, but without success. The problem is she is unable to stand unassisted. She is getting good medical care at Kaiser Walnut Creek. Ironically, Kaiser has rehab PT. Too bad Parkinson isn't classified as a sports injury! I thought possibly you or one of the others might have some suggestions. All the best to you and your brother. And thank you again. Harry Freis Cell 925-878-9112 P.S. The morning interview show is also terrific. thank you Harry. In terms of exercise, you might want to contact John Aruge who leads classes in the East Bay. His website is www.johnargue.com. Good luck and thanks for your kind comments. Dave I.
Rod said on February 3, 2009 11:54 PM:

I forgot to mention that I worked at Montrose chemical corp. when I was 19 and was heavily exposed to DDT. Has this pesticide been associated as a trigger for developing parkinsons in older age? I'm now in my 50's. Thanks, Rod
Jane said on February 3, 2009 11:55 PM:

Back again. My first symptoms were noticed in 3/03, and I received a Parkinson's diagnosis in 7/06. A positive attitude, CoQ10 and 40 miles per week on a stationary bike appears to have slowed the progression of the disease. So glad to hear about the exercise research because CoQ10 is so expensive. Since retiring I am unable to continue my prescribed dose of 1200 mg. Without knowing why, I instinctively knew that exercise made a big difference in my quality of life. Now I will incorporate more exercise into my daily routine. I can't thank you enough for all this valuable information. You will be in my prayers.
Connie said on February 3, 2009 11:55 PM:

An inspiring program for those of us with it in our families. My grandfather was from Larvik, Norway. He had Parkinson's. His son, my father, currently is battling it. I am just turning 60. I don't know yet... If there is still a need to add to the genetic research I am sure my father and I would contribute. I don't know if more Larvik input would be helpful. Are we a large group? Just a personal note too. I took a children's literature class from your father at Stanford. He was one of the reasons I became an educator. Thanks Connie ...I'll tell my Mom ...she'll really appreciate that! It's a great note to end on for the evening. And to everyone else ... thank you for commenting ..we're signing off for the night ...but we'll work at getting more responses to your queries later this week. Thanks everyone! Dave
Adele Hensley said on February 3, 2009 11:56 PM:

Thank you Dave, for doing this discussion and sharing yourself with us. Parkinson's can make a person want to isolate herself. You have reminded us that we are not alone. When Michael J. Fox said that thing about the other shoe already having dropped, my husband and I exchanged a meaningful glance. When my shoe drops, my husband helps me put it back on--literally. Thank God for caregiving loved ones, and for people who understand. Thanks Dave. Adele in Chicago
Marilyn Anderson said on February 4, 2009 12:04 AM:

A great program, I work with many folks w/ PD as an Occupational Therapist and also find exercise and getting our patients back to participating in their own Activities of Daily Living w/ use of some different techniques can make a big difference in their independence. I feel they often get short changed by many in the health care field by the lack of knowledge by the very professionals who suppose to help them. I also see caregivers playing an important role. I always put myself in their place, both patient and caregiver, what would I do? This could be me...Thank you, Marilyn Anderson, OTR/L
Rod said on February 4, 2009 12:23 AM:

Another odd and regular occurence is that after I wake up from a nights sleep, I will have dreams just as I have awaken but with my eyes closed. It is the strangest experience, because I'm aware of being conciously awake and yet I'm in this dream like state, and I'm able to lapse into and out of this dream and consious state instantaneously at will. Is this what is ment by REM sleep disturbinses linked to the early onset of parkinsons? Thanks, Rod
John Newbold said on February 4, 2009 12:51 AM:

Just finished watching "My father, my brother and me" on PBS's "Frontline." It brought back rushing, memories of taking care of my father who succumbed in 1992 from an atypical form of Parkinson's called Olivo-ponto-cerebellar atrophy (OPCA). We too felt trapped without options during George Bush Srs. freeze on fetal tissue research. Adrenal gland procedures seemed promising at the time as an alternative, but were soon proved ineffective. As a last gasp hope for some improvement, or as a last chance to stop the degeneration we experimented with a palladotomy procedure. It proved ineffective, but my father's atypical form of Parkinson's may have been the limiting factor. One of the bright spots in the course of our attempts to seek treatment was being a patient of Dr. William Langston and his staff (featured in the program). His treatment protocol and suggested range of motion exercises seemed to perk my father up to the possibility of at least holding the disease at bay while seeking promising treatments. They never came for my father who waged a valiant battle, all the while with chin up and a cheery attitude. I always thought I had a peculiar vantage to look at this dread disease along with others that show promise of cure through then fetal and now stem cell research. My father was a pioneer general surgeon in the central valley town of Lodi, California. I always thought it tragic that my father who served mankind so well for so many years would have his opportunities of a cure doomed by small-minded moralists, quack ethicists and politicians playing doctor and God. Truly, thank God for Barack Obama.
Sandy Banks said on February 4, 2009 1:59 AM:

Thank-you for the great education. My heart and prayers and thanks go to Micheal J. Fox for not being too embarrassed to go public. I love him, I love him, I love him! He has alot of courage and humility. Hopefully someday, people like Rush Limbaugh, will have lawsuits brought against them, with some psycological diagnosis, and will be court ordered to do community service, as a learning experiance, to spend time in talking support groups to hear how much it hurts the feelings of people with neurological disorders to be called nasty names, and to perhaps also have to see the physical therapy these people undergo to help their minds regain control of their bodily functions, so many ,like him, take for granted! I was diagnosed with severe cronic asthma when I was 4yrs old, in 1956. I was not given albuterol until I was 6yrs old, but had such a severe neurological reaction the dr told my mom to keep me away from known allergies I had so he would not have to prescribe the albuterol. I did not tell him that I had petite mal seizures, occassionally, from before I was a year old. He did not observe me having a petite mal seizure until I was 18yrs old in the hospital for an extended stay from a bad bout of the asthma. He immediately ordered the nurses to take the med feeder off the oxygen tank, and got so upset, he tore the tubes off himself. He had had other patients who had , what he refered to as, medically induced parkinsons as a result of side effects of medication. I am now on SSI, and have been told I have to use the albuterol, although I do 'cheat' and use over the counter Primatene at least half the time, the drs have told me they have never heard of an allergy to albuterol or it triggering petite mal seizures. Have any of you ever heard of medically induced parkinsons, and is there any known link between epilipsy and parkinsons? Being on SSI, with no family support, I have little choise of primary care physicians, or specialists. The disparity of care afforded according to financial status, and family support is very annoying! I have been on and off of the albuterol for about 10 years now and the petite mal seizures have slowly become more frequent, with extended periods of head tremors, and mild persistant shaking of my arms and hands. I am housebound alot but have had to go out in public with the head tremors, (calling myself a natural 'bobblehead' usually breaks the ice of onlookers!) which is very embarassing, but I need the excercise and can't afford to worry about it. The drs only keep saying there is nothing they can do about it and that they think the benefits of the albuterol helping me to breath, outweigh the side effects ( thats if that is what is causing the tremors) of the tremors and petite mal seizures. Thank you for your time!
Del said on February 4, 2009 4:45 AM:

I would like to see exploration of Australian Autoimmune specialist Noel Batten's view of Parkinson's and other disorders. http://www.parkinsons-success.com/
Sally said on February 4, 2009 5:30 AM:

Great show last night--very uplifting and hopeful rather than depressing. I'm curious about the cholesterol connection--as I recall, there was a great deal of talk about PD patients having low levels of cholesterol. The researchers speculated that people need cholesterol to filter toxins. Now that we are routinely urged to take statins to lower cholesterol, is this a concern? Has the research gone any further? Thanks.
Betsy Knott said on February 4, 2009 6:11 AM:

Thanks to the Iverson family for sharing their PD experiences and their upbeat attitudes. This program was so well done, educational and full of hope. Dave's narration and interviews were perfect and made the program very personal and real.
Marian Ridolfi said on February 4, 2009 6:44 AM:

Recently diagnosed, but it's been coming on for five or more years (at age 47) and I didn't recognize it. No family history six generations in every direction, but the pesticide information in your program was alarming. I was exposed to DDT, Parathion and Paraquat in heavy doses for the first 10 years of my life as a child on my family agricultural farm in Northern California. Is there a study I can participate in? There are unique and strange physiological experiences I've had over many years that I wonder may have been a warning. For example, I've craved protein my whole life, and today's medical advice is to limit protein because it interferes with the distribution of Sinemet to the blood stream. There are others such as a metal taste in my mouth, etc. Good program, thank you so much. My only comment is regarding the lack of information/research from other countries that are not blocked from conducting embryonic stem cell research. Best wishes to all that study and live with Parkinson's.
Mark Nelson said on February 4, 2009 6:51 AM:

A very well put together documentary. Over the past 2 years, I've been continually learning about Parkinson's disease as my fiance's father has been living with it for 15 years. You did a great job of putting the disease, science and current and future research into a very easy to understand format. And the underlying theme of hope and courage truly made this a wonderful piece. Thank you.
Robert Morris said on February 4, 2009 7:14 AM:

I have had Parkinson's symptoms since 1993, but my deterioration has been quite slow, and I have been almost free of side effects from the medications I take (bromocriptine, Sinemet, Comtan, and Amantadine). I maintain very active life style including an hour or two each day of "heavy" exercise. It seems to me that the carry over effect of exercise from one day to the next is not great, but starting the day with some sort of physical activity is certainly helpful. When I was young I took piano lessons and have always taken much pleasure from listening to and playing music (in private). My wife is an accomplished pianist. One day a few years ago I felt inspired to try playing a tune in her electric keyboard, and I found it enjoyable even though my fingers had their own ideas about which notes they would hit. I kept trying to improve several times a week, often for an hour at a time ... until aches in my arms were too distracting. I think that this activity may be even more beneficial than the exercise I mentioned above. In any case, I feel that in some ways my condition has actually improved in the last two years or so; for example I rarely experience "freezing" now ( it was getting to be a 2 - 3 times a day nuisance), my gait is consistently better, including almost normal arm swinging, and I have not needed any increase in my medications for some years. I actually cut back on medication as I went off Permax without changing anything else. My ability to play quite complex music on the keyboard has improved greatly, as has my enjoyment of same. I can't play anything very fast, but I have lots of time! As you can see, I am able to type as well, though I hit the wrong key quite often. My message is this. My experience suggests that music has much more application than simply added stimulation.
Christy said on February 4, 2009 7:22 AM:

My mother is 87 and has PD. It was not diagnosed until about 6 years ago. I am 60 and have had essential tremors for over 20 years--they have remained about the same with slight shaking in hands when I lift a coffe cup or plate and slight shaking in my head, hardly noticeable. I am wondering if these tremors are an early indication of PD. Some literature says they are not related to PD and others say that some people who have PD did have essential tremors earlier in their life.
Lynn Ascrizzi said on February 4, 2009 7:44 AM:

I have been studying stem cell research ever since my son developed PD at age 29. I was moved by Frontline’s sensitive, informative and well-done documentary. Nonetheless, I am astounded that more autologous stem cell implants are not being done, right now, in the U.S. when so many successful trials and treatments are occurring elsewhere, such as in Beijing,China. For instance, there is Dr. Augusto Brazzini of the Instituto Brazzini Radiologos Asociados in Lima, Peru. In March 2008, he came to Washington, D.C. to present his findings to the Society of Interventional Radiology (SIR). Using interventional radiological techniques, he is infusing autologous stem cells derived from bone marrow into the arteries that supply blood to parts of the brain that are typically damaged by Parkinson’s. He wrote recently that so far, he has treated 78 patients of all ages and stages of the disease: “(A) few patients have experienced 15 percent improvement, the majority had an improvement above 50 percent and some have experienced 80 percent improvement in their symptoms,” he said. His extract can be found at: http://www.jvir.org/article/PIIS1051044307018702/fulltext I am not saying his treatment is definitive, but it deserves more study. I cite it to show that much more is happening right now with stem cell therapies that can relieve symptoms for people with PD than is being openly discussed by university-trained doctors in the U.S. who are competing in a fierce race to get their research funded. I agree with the person who asked why Dr. Michael Levesque’s pioneer adult stem cell treatment of Dennis Turner was not mentioned in the documentary? Levesque has been struggling for years to get clinical trials underway in the U.S. And, there are many more examples like this. L.A.
Paul said on February 4, 2009 7:46 AM:

Fantastic. Very informative and moving piece. Highlighted the state of Parkinson's Disease on many important aspects of PD etiology and mechanism, prevention, treatment politics and advocacy. Perhaps it didn't cover everything or drill down deeply into all aspects of some issues but it was very comprehensive. I was thrilled and am no stranger to PD. Brilliant how you profiled leading researchers such as Bill Langston and cutting edge research to study mechanisms of familial parkinson's disease (LRRK2) and protective effects of exercise (monkey studies). I saw poignant images of my deceased PD sufferer (adoptive) father in some of the PD patients (and caretaker mother) in some of the people you profiled. Highly recommended. Congratulations and best wishes for Dave Iverson and his family and all the PD patients who participated. thanks Paul ... I really appreciate your careful viewing ...it's the kind of response every reporter/producer hopes to receive. My deep thanks. Dave I.
Terri said on February 4, 2009 8:03 AM:

Thank you for this amazing program. I am 51 and have had Parkinson's for about 7 years. One thing you don't hear much about is all the different varieties of symptoms. My challenge is with whole body dystonia and bradykinesia. Among my friends in my PD group, there are those who have more cognitive issues than physical ones and those for whom anxiety is the overriding challenge. I would love to hear more about these other symptoms that are maybe not quite as common as the tremor, and how they are treated. I loved watching the entire interveiw with Michael J Fox. I can really relate to what he says. I understand fully. I also wouldn't want to go back to where I was before I had Parkinson's. I am often asked to speak to high school students about my challenges with Parkinson's. I always start out by telling them that I have a progressive neurological disorder that will eventually get worse no matter what I do but that, despite the obvious challenges, I've never felt happier or healthier in my life!
Lorraine Wagner said on February 4, 2009 8:11 AM:

I appreciated your Parkinson's program very much. I have been diagnosed with PD for 12 years. Have there been any studies on the relationship of pain and PD?
Mary Sontz said on February 4, 2009 8:15 AM:

My name is Mary Sontz and I am 42 years old. I was diagnosed at the age of 40 but have had the symptoms at 35. I spent 5 years trying to convience my PCP that I needed to see a specialist. In Nov. of 2006 I went to a Movement Disorder Specialist and within 30 minutes I had my diagnosis. Now I could begin to live my life again. I never exercised prior to my diagnosis but now I go to the gym almost every day. I have started my own Parkinson exercise class at my gym. I am also the President of the Maine Chapter of the APDA and with that honor I have made it my goal to educate the primary care providers in my State that the should not turn away the young but dig deeper and put the puzzle peices together. I have appoached the media and have been able to get the word out and mant YOPD's diagnosed.
John Bohney said on February 4, 2009 9:03 AM:

The illustration of a gene was incorrect. A gene is a series of bases (A,T,C,G) in a chromosome. The illustration stated to be a gene was in fact a protein. Hi John: Not quite sure how to respond to this. What we said was that it was a "graphic representation of the gene in question' ... and it was developed by the geneticists at Mayo Clinic ...but I'm curious about your point so will check further. - Dave I.
laura said on February 4, 2009 9:04 AM:

I am the care partner to my youngest brother dx in his mid 30s. We can trace the disease back to age 23 when he lost his sense of smell and felt changes in balance while running. The "optimistic" view presented in the video is lovely, but hardly resembles the struggles and difficulties we have endured. My brother is unable to earn a living since 40 years old, so he is at the mercy of the SSA, an agency that does not understand how problematic PD is. Dr Langston's perspective comes closer to defining what I have witnessed, that PD (especially young onset) is a complex set of brain disorders. I should add we grew up near the Los Angeles County BKK landfill, identified by Congress in 1984 as a toxic dump. Among many hats I wear as a support to my brother is "defacto" social worker, just the process of obtaining his disability benefits to kept him from being homeless was ridiculous. We have good doctors now, but in the past felt like a lab rat experiment with medications being tossed at him with little regard for the side effects and interactions. His conditions worsened dramatically, with high anxiety, sleeplessness, and confusion. I think the film is very important to educate the public, but in terms of accurately portraying the daily struggles especially the "non-motor symptoms", it did feel reality based to me. thanks for writing this Laura. I can appreciate the different reality you're describing. What we tried to do was show PD in a variety of circumstances ... the tougher daily realities like those of Tom and Madeliene Shearer ...as well as outline the more hopeful science. And of course it represents my own approach to the condition too ... and I'm very lucky to be so mildly affected at this point. So if we didn't give full service to the experience you describe, then I regret that. I know you know that one film can only cover so much terrain, and everyone has their own experience with this condition, but I am sorry if it didn't capture yours. Thank you for writing. It's important that we hear all these voices. Dave I.
Nan Little said on February 4, 2009 9:12 AM:

1.In 1972 my father died from ALS at age 56. In Jan. 2008 I was diagnosed with PD at age 62. None of my three older brothers has either disease. I'm wondering if there is a correlation between ALS and PD? 2. In Oct. 2006 I developed shooting pains in my right arm. The neurologist said I had tennis elbow, golf elbow and carpal tunnel and gave me devices and exercises which did not help. In August 2007, while biking, I had a huge pain shoot down my left arm. The ache following lasted for several hours. A full battery of tests showed nothing. In Oct. of 2007 I developed a shaking in my right arm. In Jan. 2008 I wrote in my journal, "I wish this shaking would go away. It's like I have Parkinson's or something." The next month I was diagnosed with PD. I'm wondering if any of these other events might have been associated with my eventual diagnosis. 3. Re exercise. I am an avid cyclist, fly-fisherwoman, skier, hiker, etc. I find that the more I do these activities, the fewer symptoms I feel. Fishing is particularly peaceful as I find that many days on the rivers, I nearly forget I have the disease. I have signed up for the ride across Iowa, RAGBRAI, with Jay Alberts' Pedaling for Parkinson's group this summer. Just training for the ride, even thinking about training for the ride, perks me right up. I also find that needlework keeps my hand from shaking. 4. Thanks for a terrific show. I'm ready to redirect some energies to finding a cure and am looking for ways to help.
Jackie Hunt Christensen said on February 4, 2009 9:53 AM:

Thank you, Dave and Frontline/PBS, for putting together this wonderful documentary. I hope that there will be a way for support groups to purchase inexpensive copies to show to their groups. Also, Twin Cities [MN] Public Television (TPT2) put together a 30-minute segment "Parkinson's in MInnesota," which aired immediately after the Frontline piece, and a 60-minute segment that will be aired at some point in the future. For the longer "PD in MN" show, I am urging TPT2 to consider having a phone bank of volunteers to take calls from viewers, because as you can see here, there is quite a response. I do have a question about PD research. For several years now, I have read about chemicals in the environment that act like hormones and assume that role in turning genes on or off or blocking receptors so that the actual hormones can't get in to do their job. It seems to me that a similar situation may be occurring in PD, with environmental contaminants affecting gene expression during key stages of development (e.g., in the womb), or possibly blocking dopamine receptors in the brain. I am not familiar with any PD research examining either of these possiblities. Is anyone looking at this? Thanks again for a very personal and educational program that should inspire many people!
Janice Whitney said on February 4, 2009 10:19 AM:

Thanks so much for the show and especially the interview with Michael J. Fox. I watched a few years back an interview on another program. He is frank and at the same time uplifting on his attitude on life itself. I was diagnoised Thanksgiving week of 2004. My life has always involved around the outdoors and my kids. As an avid hunter, fishing (both fresh and saltwater), camping or just out crusing our beautiful mountains (Cascade and Olympic ranges) here in the state of Washington. Life has been good and at times very bad but you deal with it. A week after my diagnois, my "assumed" spouse of 22 years left. He could not deal with my health issue. It was a blessing even though at the time a severe slap in the face so to speak. Then on Dec. 14th of 04 my dear mother passed away from a stroke. I lost my brother who I loved dearly a few months later along with my best friend and hunting partner, Bob. Until I saw that first interview with Michael J. Fox, I suffered from deep depression, anger and just plain giving up on life. Seeing him and listening gave me the courage and attitude that I sorely needed. In a way it was as if my mother was talking to me for she (and my father who passed away in '81) always said that lifes' rough spots were what gave you character. And to not let the "other" win. In November of 2005, my daughter who was told she could never have children gave birth a big (12lbs 8oz boy) happy and healthy son. Giving me one of the most prized and wonderful gift I could ever have or want. He is now 3 yrs old and keeps "Pima" (he has called me that since he started talking) and I babysit a few days a week. I am exhausted by the end of the day, but he is worth it. Granny is showing him the great outdoors and the wonders of rooting around in the gardens. He also loves my dog Honey, who is so great with him. A Fox Red Lab who is the sweetest dog I have ever had. I am now in line for a DBS surgery AFTER, my Parkinson's doc said to get my knees fixed (need both replaced). Plus I have a wonderful life partner who has been my best friend for almost 30 years who loves me unconditionally. He knows what is ahead and it does not matter. Only that he worries that when he sets me up on a landing for deer or elk hunting that he will get Alzhiemers and forget where he left me. LOL! I said that is ok, just make sure that we get me a 4x4 wheelchair by then. I still hunt but not like I used to and I have to use a gun rest absolutely or I wont shoot. Now the fishing part the jerks and such work to my advantage there. My better half has also been teaching me how to run his 30' Carver which is his pride and joy in the boat area of his life, I haven't driven his big Ford 4x4 yet. But it is in the future. He has a lot of questions on the DBS sugery and I saw where you have addressed that in this website. I sent him the link so he can read it. If his old computer doesn't hiccup and die on him that is. I do see a great Parkinson doc at the Swedish Hospital in Seattle, WA and it is very important for those of us with any diease or what ever have faith and confidence in their doctors. I was seeing one here in town (I live in a small community on the Olympic Peninsula, WA) and I just did not get the feeling that he was into "doctoring" anymore but on his retirement. So I decided to go to the "big city" for this Parkinson's thing. And I am glad I did. Even though I still get lost and tangled up in the downtown streets of Seattle. Believe I have just about found every different route you can find to get to the Swedish Hospital for the Branbridge/Seattle Ferry termianl. LOL! Don't have that problem in our forests but man, a city I just can't get my bearings at all. But it is worth it all for I just love Dr. Suzzie Ro, who listens to me and answers my questions no matter how silly or mundane they are. Jan
Janice Czyscon said on February 4, 2009 10:36 AM:

Dear Dave: I missed the report last night but just watched it online. Thank you for a well done report. My Mom is 86; she was diagnosed 8 years ago. Thanks for giving us both renewed hope. Best wishes to you and your family. Janice Madison, WI
sioux-zen said on February 4, 2009 12:11 PM:

SYNERGISTIC PRESENTATION! my husband had a life-long history of diarrhea and took milk of Bismuth daily could H-pylori have been a factor with his PD? is there a specific PD sub-set with no tremors and symptoms of: limb rigidity drooling loss of appetite speech difficulty if so what is that PD type called? TEXAS-size thanks for your time and attention!
Tom Armstrong said on February 4, 2009 12:53 PM:

Hello, thanks for the excellent show and for the very interesting, informative, and touching Q&A comments. A question please for the DBS experts: Twice, following MRI scans of my brain, to my great surprise, I have been free of symptoms (tremor, rigidity, slow movement) immediately and for days after - despite cutting way back on my Synemet and Mirapex. This leads to my question: since DBS is so dramatically effective, does that not suggest that brain stimulation without surgery could be effective too - eg by magnetic field 'stimulation' (or ultrasound) ?
Connie said on February 4, 2009 1:15 PM:

I am 54 and have PD. I appreciated the insight into origins of PD. The exercise segment was very encouraging since I recently have endeavored to emulate the lifestyle vigor of the exercising monkey. Ironically, the program featured ONE person who had experienced a ‘miracle’ cure with a stem cell transplant, but the THOUSANDS who have experienced the 'miracle' treatment of DBS were not featured OR mentioned. A report on desserts that omits chocolate would not, in my view, be on the forefront, or the FrontLine. Hi Connie: It was actually a fetal cell transplant procedure, not stem cell. As for DBS ...please see one of the earlier posts where we explain why we did not spend a lot of time on that procedure. Dave I.
Bob said on February 4, 2009 2:18 PM:

Thanks for a wonderful show. My mother has PD and has been on meds for nearly 10 years. Her father had PD late in life. I have two questions: 1) On hallucinations and mental state: is there any way to reverse or avoid this terrible side effect? 2) On prevention: for those of us who likely have a genetic risk, besides vigorous exercise, what might we do?
Brandon M Welch said on February 4, 2009 4:15 PM:

Great show last night! Family history is a very important disease indicator. By knowing the diseases that run in the family, one can take steps to help treat, delay, and/or prevent the disease from occurring. There is a new website that helps people build their family health history online called www.ItRunsInMyFamily.com. The site currently doesn't track PD but it is easy just to add it in the 'other' category.
Heather said on February 4, 2009 4:24 PM:

To the writer Nicholas who asked whether there was a clinic in the Philadelphia area - yes there is. The Parkinson's Disease and Movement Disorders Center at Pennsylvania Hospital - part of the University of Penn Health System.
Judy said on February 4, 2009 5:38 PM:

Dave, your movie is an inspiration. My family deals with Huntington's-a hereditary movement disorder without any treatment. You showed that exercise boosts growth factors--very encouraging. Something to study for HD. OK, I'm ready for your next film! Good job! PS: iPS research is going on in Northern California!
Joanne K. said on February 4, 2009 6:54 PM:

In response to Kathy Brady and blurred vision: I started having double vision about a year ago. My neurologist did not hesitate to refer me to an opthomologist. All muscles are affected by PD, including the eyes. Sometimes I feel like my eyeballs are bouncing around in their sockets. If I am not wearing my reading glasses, and someone is talking to me from a close range, their face is a blur. I did alot of research on the internet about this - even the medication I take can cause it - Mirapex and Prolopa. In regards to the programme, I believe it should prove very educational for those who know little or nothing about PD. I wonder if the people who are against using fetal stem cells for research, are also against organ transplants from doners who die in accidents, etc.
Kathleen Davison said on February 4, 2009 9:00 PM:

Dave-I noticed in the beginning of the program you and your mom looking at a scrapbook with a letter lamenting the fact that your dad was giving up being the voice of the Lone Ranger. I noticed that the letterhead clearly said WEBR. Was this letter perhaps from a radio station in Buffalo, NY? My dad worked there from the late '30's until the 60's and I remember listening to the Lone Ranger as a child. The "call letters" caught my eye. Thanks Hi Kathleen: Yes, my Dad worked at WEBR in Buffalo where both the earliest version of the lone Ranger and the Breen Hornet originated ... both the creations of Buffalo writer Fran Stryker. My Dad worked on both shows in the early 1930s in Buffalo and then subsequently in Detroit where Fran Stryker later moved the shows. Dave I.
Mike DeHate said on February 4, 2009 10:03 PM:

Great report, thanks. I'm 62 and was officially diagnosed with PD 18 months ago. I suspected I had PD for about 3 years prior but did not want to be officially diagnosed due to the possibility of losing my flight physical and flying career. Once the tremors became obvious to others I decided to see a neurologist, and had to retire. Despite increasing tremors, shuffling pace, slowness of speech, non swinging of the right arm, etc, I delayed starting on any meds for 18 months because of the "lifetime" of leva/carbadopa effectiveness. I now take 2, 25/100 pills, 3xday and only have a slight tremor. My neuro has left the dosage up to me and I want to know if this is a good/valid approach. I walk at a moderate pace 2-3 miles a day 5 X week. Some of the other meds you mentioned are not FAA approved, and although I am no longer able to fly commercially, I can still fly my own airplane while on Sinemet.. Also does alcohol consumption have any effects on PD progression or the meds? Thank you for your involvement.
Diane C said on February 4, 2009 10:19 PM:

Thanks so much for a thorough, informative, inspiring and helpful program. This program has done so much to increase awareness and understanding of PD, the first step in any battle to rally the troops. I am 65 and newly diagnosed although I now know I had the telltale symptoms for many, many years. Two questions: First,I take an hour fast walk each day and walk/swing my arms to 119 beats per minute. How do I know if this is sufficiently vigorous and should I be aiming to have my heart rate in a certain zone to get maximum neuro-protective effect? Second, I have been tested as having extremely high mercury toxicity and it has been suggested that I engage in chelating the heavy metals which is a multi-year process. Is this something I should consider? Right now I am taking Azilect and 1200 mg of CoQ10. Thank you so much for any information you can share. All your answers to the questions of other have been so helpful. We really do not know how much exercise is "enough." Preliminary data from our monkey study indicates that more is better; however, we need to make sure that we do not overtax the patient. We are currently comparing a fast walk at 60% max heart rate to a moderate jog at 80% max, and in our initial monkeys, 80% was significantly better. (We chose 80% as about the maximum rate that our medical consultants feel is reasonable to expect for a patient with Parkinson's disease.) - Michael J. Zigmond, PhD, University of Pittsburgh
Sherri said on February 4, 2009 10:46 PM:

Dear Dave, first I want to extend my sympathy to you and your family for the loss of your brother. In many ways the program seems to be a tribute to your father, brother and your wonderful, inspiring mother. Her statements that closed the program were so inspirational and encouraging to me. I also felt very supported by your narration of the program. As you were driving and running and talking about your disease awareness and the journey as you were experiencing it and wondering about your future, I felt that we were on similar pathways and sharing the journey in the same timeframe and with similar feelings of sadness, wonder, challenge and determined hope. I know I will continue to feel comforted by your program and testimony. Although I was bothered by many symptoms for about 5 years, I was not diagnosed with PD until 2 years ago after I began to have hand tremors. I actually do feel better than at that time because now I have medicine. I understand that prior to 30 years ago, such medicines were not available. I had been swimming and taking voice lessons for singing, riding a bike and walking but had drifted from the bicycling and swimming after problems with walking. Now I am back to swimming and walking and these activities are very helpful in enhancing my coordination, especially the swimming. I also do some weights which improves my feeling more centered and hand coordination for writing which is still very hard to do. I find the singing to be necessary for my articulation--and it is fun! I am a full time professor at a university and your program convinced me that thoughts of retirement (I'm about to be 64) should be put aside. I do want to continue my profession which I love -- so that is actually great. I am in a NIH study about the potential benefits of creatine. I love being in the study and working with the research team and believing that I'm in the experimental group (even if not) is inspiring and adds some fun to the PD experience. Thanks for listening and sharing. Dear Sheri: Thanks so much for writing and expressing your support. I just want to clarify that the "Peter" whose passing we acknowledged at the end of the progam was not my brother Peter, but Peter Sauer who was the patient we profiled who had a fetal cell transplant. Peter Sauer died of causes unrelated to Parkinson's last month. My brother, Peter Iverson, is very much alive! He's a nationally renowned scholar who teaches at Arizona State University, where he continues to mentor students and publish widely. Dave I.
Tom said on February 5, 2009 5:14 AM:

Dave, I'm sorry to have missed the broadcast and chat(my wife taped it and I saw it last night). Thank you. Thanks for airing the very interesting and accurate report and for helping me find my temporarly misplaced sense of hope. And for giving me a kick where I needed one. It's a bit after 4 am on the East Coast, but I woke up happy and excited by, of all things, your sermonette on exercise. I know it well. I've recited it to others, and heard my doctors tell me too: move it or lose it. I got off track after retiring last year (40 years as a news reporter in Chicago and Buffalo, and 3 as a television field producer). And lately, it's been too easy to do other things, because my balance has been getting worse. Then along came your report and I caught something new (for me) -- The part where one doctor advised a patient to count her steps and it would make it easier to walk. Well, I tried it and it works!! And now I'm walking around with greater confidence and vowing to go back to the tredmill, and to long walks with my wife. My father, who died of complications from PD at age 82, a big believer in mind over matter, would have concurred. He claimed he could control his shakey hands "If I think about it." I agree with Michael J. Fox: I don't think I'd change much about my life, because being diagnosed 7 years ago started a trail of discovery that led me and others in my large Midwestern family to new (albeit sometimes unwelcome) revalations. But the possibilities and the knowledge it brought are the most important. Finally, we have a name for the ailment that we have seen in our elders for generations...LRRK2. And one big blessing is the possibily to help others with PD through joining in the research effort. An equal is the sense of kinship and connection I feel with other pwp and the smart, dedicated researchers who are working to help unravel this mystery. (Collection of mysteries?) I'd urge you to contact Dr. Grisel Lopez at the NIH,(glopez@mail.nih.gov) who is heading a 10-year study of LRRK2 patients -- That is, if she hasn't already found you! I'd also love to compare notes with you. Thanks, another LRRK2 brother Thanks Tom ...great post! As one TV reporter/producer to another ... who needs time cues ...way to go! - Dave I.
Jeffrey Howe said on February 5, 2009 7:50 AM:

Hi, Great show... I was diagnosed April 2008 with Parkinsons. It hit me fast, hard and strong within a few short months and the pain was intense. I'm on 41 years old... in excellent shape as fitness instructor at Gold's Gym and a professional sign language interpreter of 25 years. It made me lose the use of my right arm-- the dominant arm used for signing so I had to learn how to sign left-handed. I related to so much in the show but what was so disheartening was how much older ones were on the show and their tremors weren't even as intense as mine. I am exercising regularly now and nursing myself back to a measure of fitness. For a period of time I couldnt even walk on treadmill as tremor would throw me off... it was so bad. Through medication Ive been able to get back somewhat to normal life and am able to work again. Thanks for making this show to educate ones about this disease. I would like to meet others who do sign language to see how they have adjusted to this disease affecting their use of arms/hands/dexterity. It has greatly impacted my life. I'm soon going to be instructing as fitness instructor at gym starting next month. Its been a struggle to get back but I need this... Thanks again.
Rob said on February 5, 2009 8:14 AM:

Hi to Dave ; I want to thank the people who put together the FrontLine production. It was wonderful. I have somthing to share with the intent of helping others who deal with Parkinson's disease. As individuals , care givers ,family & friends. This help is Spring Forest Qigong (SFQ). It is a way of healing 1,000's of years old from China.This type of Qi ( pronounced CHEE ) gong was developed by Mr. Chunyi Lin. He came here in June of 1992. Many medical doctors ,nurses,medical professionals and average people have learned SFQ. Chunyi's Vision "A healer in every family and a world without pain." Chunyi Lin is a certified international qigong master and the founder and creator of Spring Forest Qigong. His fluency in numerous Chinese dialects provided him the rare opportunity to study with many of the most respected qigong masters in his native China. He has been teaching qigong and using qigong techniques to help others for more than twenty-five years. Master Lin is also highly skilled in tai chi, Chinese herbal medicine and acupuncture. Master Lin is the director of the Spring Forest Center in Minneapolis, Minnesota. As many as 200 people, from across the United States and many foreign countries, come to his center for healing assistance every week. During 2004 he created an educational partnership with Normandale Community College of Bloomington, Minnesota, to provide fully-accredited courses in Spring Forest Qigong health and healing techniques. All of the course curricula were created by Master Lin, and he serves as the program director and lead instructor. In January of 2005, Master Lin was awarded a masters degree in Human Development-Holistic Health & Wellness from St. Mary's University in Minneapolis, Minnesota. He served as Director of Qigong Programs at Anoka-Ramsey Community College in Anoka, Minnesota, from 1999 to 2004. He was formerly a college professor in Guangdon Province in China. Master Lin teaches four levels of Spring Forest Qigong and has created a series of home learning materials for students, including videos, guided audio meditations, and reference manuals. He is a frequent keynote speaker at national health conferences. He is coauthor of a #1 Amazon.com bestseller, Born A Healer, and coauthor with Dr. Nisha Manek of the Mayo Clinic of a chapter on qigong in the recently-released Textbook of Complementary and Alternative Medicine, 2nd Edition. Master Lin is also a member of the Transformational Leadership Council founded by Jack Canfield. Since coming to the United States in 1995, Master Lin has helped more than 100,000 people learn about the powerful healing benefits of Spring Forest Qigong. He now devotes all of his time to the teaching of Spring Forest Qigong and helping others. He lives in the Twin Cities with his family. I have seen many wonderful healing happen to many people over the years. There are many testimonials on the SFQ web site from regular people & medical doctors . One that is special to me is from Sister Mary Paul.excerpt] "I have to tell you that I'm 87 years old. I was to the doctor about maybe four or five months ago and she said, 'You have the body of a 55-year-old woman.' I've had open-heart. I've had two cardiac arrests. And so she said, 'What's your secret?' And I said, 'qigong.'" I have no interest in sharing this, other than to help others. I do not work for Mr. Lin or Spring Forest Qigong ,Inc. My life & my families is much better because of SFQ. This is the web site www.springforestqigong.com Thank You Rob
Donna Katser said on February 5, 2009 11:05 AM:

I was diagnosed with PD in 1998 at age 40, my younger sister at age 35. My younger sister's symptoms re much worse than mine, she has had DBS with good success. I am doing well with meds, esp. requip (generic forrm). My problem is memory and processing information. Would Aricept be of benefit in this case? I add to other comments read: having a good neurologist is crucial to managing this disease.
Doug Souza said on February 5, 2009 2:31 PM:

As I have gone through everyone's comments, there are a number of individuals with questions regarding DBS or are considering having it done. While I am only one person, I can tell you from my experience that the benefits of DBS are tremendous. I am 46 (diagnosed at 41) and by last spring I was taking sinemet almost hourly to be able to function (and suffering the obvious side-effects of taking it so often) and it was doubtful that I would be able to return to my teaching position in the fall. After undergoing DBS surgery in June of '08 I am back to work, taking Sinemet only a few times a day and functioning for the most part like I don't have Parkinsons. I understand why in one hour the program couldn't cover DBS, I encourage everyone to look into it as an option, particularly when your symptoms have reached the unmanagable stage.
Barbara Galbraith said on February 5, 2009 9:50 PM:

An Excellent program...my husband was diagnosed with PD age 66. Doing alot of reseach, I found out about a doctor in Calif., I believe, who does injections of glutathione with fantastic results. A couple of people mentioned it in the comments. Any comments from you would be much appreciated. Also, what stage do you need to be for DBS? And does it wear off eventually? My husband's health is exacerbated by severe spinal stenosis so it's hard for him to do exercises. We're working on severing nerves in his back to help that problem. Also, is a lack of depth perception a symptom of PD? I was not aware that hallucinating was a symptom-but that explains a lot! Thanks for your comments.
Susan said on February 6, 2009 2:16 AM:

I recently discovered the Wii Fit program from Nintendo and find that even though I am an avid tennis player, the small motor, more precise exercises (especially for balance) are very helpful and they are fun. If you can't get to a group or don't like working in groups, this can be a useful tool? Are there any more exercise DVDs anyone recommends?
Randy Eady said on February 6, 2009 7:17 AM:

As Susan just said--balance exercise is a key along with rhythm and bilateral coord. Our Foundation has done extensive research on Continumm of Therapeutic Movement and Music and Dementia: See this link for more details: http://elder-care-community.aplaceformom.com/forums/p/93/5344.aspx#5344 Topics Covered: Ultrasound shown to exert remote control of brain circuits CAN DRUM CIRCLES MIMIC KANGAROO MOTHER CARE IN ENRICHED-CARE ALZHEIMER'S AND DEMENTIA CENTERS? Title: Drum Circles - Therapeutic Rituals of Solidarity: Singular and in Community (Cultural Anthropological Illustrations of Mind-Body-Spirit Integration employing principles of Pow Wow Drum/Dance celebrations in contemporary assisted living residences for seniors with Alzheimer and Dementia) Here's our abstract for the MDSociety Conference: The Movement Disorder Society's 13th International Congress of Parkinson's Disease and Movement Disorders Abstract Number: 550568 Presenting Author: Randy Eady, M.Ed, NCC Department/Institution: Quest Educational Foundation Title: Therapeutic "continuum of movement rituals" employed to alleviate symptoms of movement disorder. Objective: Stress floods the brain with certain hormones (glucocorticoids) known to suppress neurogenesis, (especially in the hippocampus). It is reasonable to consider that an integrative lifestyle that engages music, rhythm and physical movement reduces stress and would be beneficial to stimulating time-keeper brain function (to assist with development/cognition and neuromuscular integration). Background: Research has shown bio-molecular benefits of ambient sound that mimics maternal heartbeat. Additionally, studies are affirming hormone enhancing activities that help release serotonin and Atriol Neuriatic Factor (ANF) strengthen the immune system and new brain cell growth. This neurogenesis appears prevalent in the hippocampus--a region of the brain associated with learning, memory and stress-related emotions and appears to benefit those at early and late life stage. Vibration, music, rhythm -- said to be the first language in sensate form in the body -- is a key homeostasis factor. This discussion explores the social effect of ambient energy (as music) in specialized settings. Elaborates on how music has been used for thousands of years in concert with movement meditations such as labyrinth walks, tai chi and other poly-rhythm activity to serve as a culturally responsive avenue to wellness. Methods: Biomimicry of components in neonatal development that initiate a calming reflex are employed around the three vegetative balance centers. Focusing on movement and rhythm protocols that correspond with proximal heart contact/womb biomimicry, our research demonstrates how the basal ganglia (in the cerebellum's critical body-rhythm and time-keeper function) continues to serves as a prime neural-network orchestrator to regulate precise shifts of brain activity. Using a Doppler-aided, steady percussion of 60 beats per minute, participants within 15 cm of each other restored natural rhythms of the body (breathing) and brought about synchronized heart rates that corresponded with a mood calming effect. Results: Understanding the anthropology of neurological development in social bonding brought about a biological wellness effect on communal gatherings in specialized living settings. Conclusions: Ongoing research indicates movement meditation that also mimics heartbeat synchronization may elicit both an E. Medicine~Empathetic Resonance response and serve as a calming activity that boosts serotonin and perhaps neurogenesis.
Gil Bayless said on February 6, 2009 1:25 PM:

Dave~ Please take a moment to email me. I have done quite a bit of research into PD. Asa matter of fact we are planning to do a pilot study based on a completely different approach. It had to be something outside the proverbial "BOX". My principal investigator has enlisted 50 participants into our study. I'll tell you more when I get a response. Aloha, Gil
Jerome said on February 6, 2009 7:33 PM:

Being a caretaker of a parent with Parkinson's I have a few responses to the show. 1) Overall, it provided a sensitive look at life with Parkinson's. 2) In an earlier response Mr. Iverson stated an attempt was made to be even-handed regarding the embryonic stem cell issue. In my opinion, the attempt failed. Intended or not, the show clearly gave the message that embryonic stem cell research is good, and the sooner those moralists get out of the way the better. I don't recall the show giving a full, intelligent explanation why embryonic stem cell research is immoral. For anyone who would like to be fully informed on this issue visit: http://www.usccb.org/prolife/issues/bioethic/stemcell/ or http://www.stemcellresearch.org/ . 3) Instead of spending so much time on the embryonic stem cell issue, why not focus attention on getting the Neupro patch available again in the U.S. (it helped my parent, for one), adult stem cell therapy, glutathione therapy, and other un-traditional treatments. Why no advocacy to get insurances to cover glutathione therapy? It has worked wonders for some people. Whenever someone gets 50 minutes on national TV one should make the most of it. The show had its good spots, but it could have been, and done, so much more. - In the midst of all the frustration, suffering, and heartache of Parksinson's, may God's peace and wisdom be with us all.
Terri said on February 7, 2009 7:44 PM:

Mr. Iverson: The show was so good. Great work. Thank you for doing it. Our clan is not from Norway, but County Donegal in Ireland. The incidence of celiac disease (gluten intolerance) seems to be prevalent amongst the Irish from the northwestern coast. Are there any studies tying gluten intolerance with Parkinson's? The IV Glutathione therapy protocol is an addendum to Dr. David Perlmutter's book entitled : " Better Brain Book" . www.betterbrainbook. David Perlmutter is a board certified neurologist.
Shoshana Paige said on February 8, 2009 6:53 AM:

Dave, I want to thank you for this report. My mother and three of her brothers have all had PD. One of her brothers passed away a little over two years ago. Interestingly, she has 4 other siblings who have no signs of the disease. These 4 siblings have lived virtually their entire lives in the same local area in Washington state, while the 4 who developed PD all spent a number of years living in California (my mother in southern, her 3 brothers in northern). Also, my mother's father is Norwegian, his parents having emigrated from Norway before he was born. Until your program, I had no idea that there was a Norwegian connection, and neither did my mother. I am wondering if I should be tested for the gene. I also appreciated the report's coverage of exercise as a treatment. I had no idea of the major potential benefits. I will now need to get my mom to do more exercise, although it has been hard for her since she has experienced serious back pain after a fall. I also wanted to say that I alwasy appreciate seeing and listening to Michael J. Fox. His leadership and advocacy on this issue has been inspiring. When my mother was first diagnosed with PD, she was dealing with some moderate depression. I bought her Lucky Man, which had just recently been published, and it was very helpful for her. I think he is a national treasure, and a true hero to all those suffering with this disease and to their loved ones. If you're interested in participating in research I would encourage you to contact one of the institutions that are actively pursing the LRRK2 mutation, Mayo Jacksonville is one, but there are others. It's important to note, though, that the mutation still only accounts for a small percentage of PD cases in Norway. Dave I.
Cori said on February 8, 2009 7:56 AM:

Dave, Thank you for putting together a terrific, informative, necessary presentation. I was recently diagnosed with probable PD, though left hand has been shaking for several yrs. I mentioned it at my last 3 general physicals but Doc didn't seem to take it seriously. Finally my psychiatrist arranged for me to be seen by a neurologist. I worked with paraquat for a short time in my medical research lab about 5-6 yrs ago. My Dad had it (diagnosed when in his 50s). His was quite severe (could barely shuffle, talk, show emotion in face, feed self); he died at 59 by heart attack the same yr l-dopa was discovered to play a role in PD (~1967). A couple of questions: - My neurologist intimated there are mild and severe forms of PD. Is this so? or is "mild" just "early". If my Dad's was severe does that suggest mine will be also? -can a PD patient live with PD or do they always die from it or a related complication? - People's comments suggest often PD life becomes a balancing act between living with PD symptoms or with medication side-effects. What are some of the side-effects & complications of the medications PD patients take? - it's my recollection that when asked in an interview (on the McNeil/Lehrer Report?) about your own disease you kept saying something to the effect "I'm so lucky" without saying exactly why (or at least that's how I remember it). I live in the boonies in northern NH; could you pass along information about where to find PD experts (between Burlington (VT) and Boston? I concur with the suggestion that a follow-up program or segment of a program (perhaps in conjunction with other 'Frontline' stories) would be interesting - sort of how PBS has the hour show 'Nova' and then bits & pieces of new science in 'Nova Science Now'
Anne said on February 8, 2009 10:28 AM:

There is a history of Parkinson's in my family. My grandmother and my uncle on my father's side had it and I was very sad to see its progress in them. I have been a runner since I was in my 20s (also played hockey, lacrosse and basketball in high school). I am now 56 and have been running an average of 20-30 miles per week for almost 35 years (with a week or two off every once in a while for illness or injuries). One of my former colleagues from McKinsey who is on the Board of Memorial Sloan Kettering tells me that exercise is very helpful with cancer patients as well. As a lover of the New York City Ballet, I also found the dance classes in this report very uplifting. I hope everyone will hear your message of exercise as well as that of time. Only time will tell if exercise has helped me.
Sadie said on February 8, 2009 10:43 AM:

About 3 years ago I had cataract surgery. While on the table, I noticed my left side shaking. About a month later I had the other eye done. Again, I noticed my left side shaking. Shortly after my left hand started shaking. I am an extremely right handed person. A few months later my heart Doctor suggested I see a Doctor specializing in Parkinson's. I was diagnosed with Parkinson's. I'm 81 years old with no history of Parkinson's or related diseases in my family.
Leslie said on February 8, 2009 10:27 PM:

Dave, thanks for taking this issue up publicly again. It was a very well done piece. My mother has been dealing with Parkinson's for 20 years now. I think one of the things perhaps discussed the least is the emotional struggle people go through to retain their dignity while facing the progress of the disease (and the effect on the caregiving partner). I loved the faces of hope and determination in some of the folks you interviewed - this was true inspiration. As the disease progresses, it seems it and/or the drugs to treat it affects the mind's ability to cope. I think it would be helpful if more about this aspect of the disease were "out there" and discussed. I'm also a *big* believer in the power and importance of exercise. Any thoughts about how advanced patients who struggle to walk and have severely reduced energy can benefit from exercise, and in what form? Thank you so much!
Paul E Mazerolle said on February 10, 2009 7:50 AM:

My friend Bill Trewin who posted a comment on this site sent me the link and suggested I take the time to look at the video. I'm glad I did because I too am on this journey. The road for each of us is different but it leads us to the same place. I've been writing and sharing poems with my friends so that they can perhaps understand better what I am going through as are so many people with Parkinson. The more others understand the illness the more comfortable we are in each others presence. Raising awareness is so important and the video does that very well with honesty. Thank you for getting the word out there. As for me I take each day one button at a time. There used to be a time I could just jump out of bed. In just a few short minutes I would be washed and dressed and fed. Now I’m not so fast. In fact, I’m very slow. But it doesn’t really matter as long as I get up and I go. It’s not easy getting dressed and I must focus my attention when I’m putting on my shirt I fight with each and every button. It can be very frustrating but I do not want to stop until my shirt is buttoned up from the bottom to the top. This is how it is and it’s how my life’s defined. I take each and every day just one button at a time. Paul E Mazerolle
Allen Braswell Jr. said on February 11, 2009 12:42 PM:

Dave, For the last two years I've been involved in an early stage medical device company that is using a non invasive , low level neuromodulation technology. Our primary area of focus is Parkinson's Disease and we're about to begin a phase III clinical trial. Earlier studies have demonstrated improvement in both motor and non motor symptoms associated with PD. I'm actually headed to San Fran next week and would like to meet with you to introduce myself and my company. I appreciated your story and your thorough overview of the disease and the many therapy options associated with it, ours however is overlooked as its unique and we don't have the exposure that larger, better funded companies have. Please feel free to contact me at the email address above if you have an interest in learning more, thank you.
Barbara Rockburn said on February 13, 2009 6:24 PM:

Thank you for providing me with so much thought provoking information. My husband Jack is now 80 years old, has endured the progression of Parkiknsons for almost 20 years. He is now in a specialty care nursing home, in a wheelchair, is 6 feet and weighs 129 lbs. His blood pressure will go as low as 55/40 and he will pass out. He has never smoked or drank and exercised regularly and enjoyed golf, swimming, etc. If we could have one more good year it would be a miracle. My questions to you are: Your article mentioned previous transplant receipients what was their success? Peter (Sour?) now aged 72 - have the cells caused him any other problems - adverse - . Why was a different surgical technique used in the States as opposed to Halifax - was the Halifax technique available to the medical profession? What has happened to those patients who overproduced dopamine, Would Dr. Ivar Mendez consider a patient such as my husband - who is suffering great pain, loss of vision (nothing wrong with the eyes) cannot turn over in bed. He is completely dependent on others for help and support. He really has not much tolose and everything to gain. So, please forward this letter to the appropriate personnel for consideration for the stem cell transplant. Thank you so ery much Barbara thank you for providing me with so much thought provoking information. transplant. Thank you so very much Barbara
Jennifer Holden said on February 13, 2009 6:55 PM:

My name is Jennifer Holden and I am a Physical Therapist in Malvern PA. I have practiced for 6 years in a variety of settings and have developed a passion for studying neurological conditions. I am currently pursuing a certification/specialty in Neurology. I recently completed a certification for Parkinson's Disease and am involved in the development and implementation of a comprehensive, interdisciplinary center for the treatment of the Parkinson patient at my facility. My team is extremely dedicated and excited to be a resource for patients and families confronted with this uphill battle. I am new to this as a specialty but wanted to say that this Frontline presentation sparked such excitement in me as a clinician and has inspired hope that exercise intervention is an essential tool for battling Parkinson's. My commitment has become stronger through interaction with the patients that have thus far served as my teachers. Thank you for this wonderful insight to Parksinson's.

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posted january 29, 2009

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