My Father, My Brother, and Me


Have you or family and friends been touched by Parkinson's disease? Share your story.

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Dear FRONTLINE,

A friend from Louisiana emailed the web-link to this program, and I just finished watching it. Wow. I have dealt with Parkinsons' for only a few years and am still well controlled with medication. As Michael J. Fox said in his part of the interview, it IS like standing in the middle of the road watching the bus come at you and wondering just what the collision will do to you -- what will it feel like physically, mentally and emotionally; how will you cope with each facit of every symptom; what will your life ultimately become? THANK YOU for addressing this topic in a sensitive yet frank way. I not only learned a lot, I feel a new sense of community with the other patients and also the researchers shown on your program.

Barbara Langston
Tehachapi, CA

Dear FRONTLINE,

Researches at Cornell University have entered into a second phase of FDA approved testing of a genetic treatment for PD. The method involves infecting genes with a virus with causes the genes to produce a chemical that mimics dopamine. It was not mentioned in the show and 3 neurologist I have mentioned it to were not aware of this research. It may be the best thing on the very near(2010)horizon. I understand from my reading that this technique does not preclude patients who have had DBS.Several interesting web sites on this subject: http://www.news.cornell.edu/stories/Aug07/WCMCparkinsons.html

This page is very good: http://mark-nano.blogspot.com/2007/06/dr-michael-kaplitts-viral-dna-gene.html

The company set up by the Cornell scientists:http://www.neurologix.net/

Steve Gallenson
Sandy, Ut

Dear FRONTLINE,

I was diagnosed with Parkinson's about 2 years ago, but I had been having symptoms for three years prior to diangosis. It has taken its toll mentally as much as physically.

I have found several things that really do help to at least slow down the progress of the disease. Yoga, meditation, very healthy diet, exercising vigorously 4 or more times a week. Exercise should include just bouncing around like a child to whatever music you enjoy and just let everything in your mind empty out except for joy, laughter and pure silliness. Laugh as often as you can. going to comedy clubs is great mental therapy.

I am a musician and the one thing I feared more than anything else was losing the ability to play guitar. Thankfully it has not effected that whatsoever ( so far )yet I cannot work with hand tools. and sometimes I have to type one handed too. It is strange how it seems to affect different parts of the brain in different ways.

All I really want to say to my fellow sufferers is to realize there are many people far, far worse off than us, so live life to the fullest, dont give in to the depression and force yourself to get out and Live and love to the fullest extent you can.

Daniel Sonder
Delray Beach, Florida

Dear FRONTLINE,

I also have worked the clinical and research side of Parkinson's for several years and can attest to the benefits of exercise. One of the difficulties in researching the benefits of exercise for any medical condition is that your tests and methods of testing all have to be published and documented to prove they are valid prior to subjecting them to the rigors of patient research and publication. A clinician who has "observed" improvements for exercisers over the past 20 years cannot simply state this, it has to be proven and the tools he/she uses to prove it also need to be proven and valid.

These "political" delays do no favors to the patients who are waiting for a promised cue. Clinicians need to incorporate some logic with their medicine and encourage patients that "Movement Disorders require Movement Fixes". You can't take a medication to do better at basketball, you have to practice those skills - and you can't expect a medication or research project to help a person with Parkinson's to walk better. They need to practice walking better (and preferably that will start today not after they validate the authenticity of walking).

Physical and Occupational Therapies can be extremely effective and they do not always need to be "Neuro-Developmental Rehab" specialists as someone else has asked. Research as recently as January 8, 2009 showed that doing 30% more than "voluntary" exericse gained significant benefits for Parkinson's patients. (Ridgel, Vitek and Alberts)

This was a very small study and will be discounted by many out there for that reason but it still points to the fact that while we wait around for cures or protective medications we shouldn't be SITTING AROUND waiting ....

Thank you so much for running this program for all of us!

Portland, OR

Dear FRONTLINE,

As much as I wanted to like the show (and it is a warmly human show at times), I was deeply frustrated because of some critical omissions.

One, Mr. Iverson assumes we all know what PD is and what it does. That is a problem, when one considers the myriad (and serious) psychological problems that make IPD a lot worse than being a 'movement disorder'.

Two, he barely cites deep brain stimulation, which is an increasingly popular treatment -- with its own set of problems. Three, trying to find the relevant course of drugs is a vexing trial for many of us, and continues to be so for all our remaining years.

And, finally, the show does not mention a common trial PD patients must go through--- trying to find out what's wrong. It takes, on average, years, and up to five or six different doctors before the final diagnosis is made. Up to that point, many of us find ourselves treated by the medical profession as whiners, cranks or hypochondriacs.

To the watching world who think it's just about tremor, this show does not serve the need for clear, relevant information.

John Milligan
Foster City, CA

Dear FRONTLINE,

As a Parkinson's patient for over 10 years, I tread a careful line between hope and realism.

As much as I need to hope and as hard as I work to stay hopeful, I think Mr. Iverson's program went too far on the side of hope, especially in the way it presented the relationship between Parkinson's and exercise.

When I scanned some networking sites this morning, I found a proliferation of comments stating that exercise prevents Parkinson's. That is simply untrue, as evidenced by the experiences of countless individuals who, despite rigorous, regular exercise, developed Parkinson's.

It is troubling that people are coming away from the program thinking that regular workouts will render them invulnerable to the complex, multiple factors that contribute to Parkinson's. Even more disturbing is the logical sequel to this line of thinking: the conclusion that Parkinson's sufferers are to blame for their condition because they didn't exercise enough.

Kathleen Cochran
Hastings on Hudson, NY

Dear FRONTLINE,

I was fascinated by the documentary because of the similarities of his own Parkinson's disease. My father was of full Norweigian descent (3rd generation), lived in a mobile home in Winterhaven, CA in Imperial County next to the lettuce fields in the early 1980's. He lived there for less than a year because the crop dusters constantly sprayed their home with pesticides. He then moved to Yuma, AZ and was diagnosed with Parkinsons within a couple of years. He was in his mid-sixties.

He died in 1995 at the age of 73 in a nursing home in Yuma. He was alternatively diagnosed with Alzheimer's disease as well. He fell frequently, could not feed himself, and lost his ability to communicate near the end. He passed away within 4-5 years of his diagnosis. Now I wonder about the possible genetic link and the environment exposure to the pesticides as the probable cause of the Parkinsons.

Vicki Farrar
Sandia Park, NM

Dear FRONTLINE,

I worked in the Watsonville (CA) Hospital emergency room in the 1980's. The waiting room was absolutely packed when I reported in for work on a Fourth of July but what was absolutely astounding was seeing two men (twins, I believe)sitting in wheelchairs with identical, involuntary arm movements who were known Heroin addicts.

To my knowledge, this was the first time anyone was seen with Parkinsonian type symptoms eventually known to be caused by "bad" Heroin. This hospital and those ER physicians have never, to my knowledge, ever been given credit for recognizing they had something unusual on their hands and taking action to refer them on. It would have been so easy to dismiss these men as junkies who were having well deserved reactions to their drug use but they didn't. These doctors should be recognized for their astute actions and starting the process that led to the research that followed.

Dorothy Hopkins
Port Angeles, WA

Dear FRONTLINE,

My mother, whose father is from Alesund on the Norwegian coast (gun) and lived for 80 years in northern California (trigger) has Parkinsons - your show was a fascinating exploration of this smoking gun that I did not have any idea existed. Could you point me and my family to a place where we could undergo genetic testing to determine if the genetic mutation(s) that seem to be associated with Parkinson's are present in her closest relatives?Thanks much

Susan Hall
Morrison, CO

Dear FRONTLINE,

Hi Dave... First, I want to say I thought the piece was great--very informative, very human. Thanks for sharing your story. I'm Debi Brooks, Co-founder of the Michael J. Fox Foundation and I hope its not inappropriate for me to post this offer here. But, many folks are asking very important and relevant questions about disease and living with disease--particularly trying to sparse out what we know and don't know about the best treatments for patients and also where current research is headed...these are the kind of questions we often hear when we host our research roundtables (presentations and panel discussions plus Q and A that are free and open to the public) in various cities around the US. I wanted to let folks know that Monday evening (February 9th) we are also webcasting our Atlanta roundtable. If you are interested in registering for this roundtable in person in Atlanta or participating via the web, please go to our web site www.michaeljfox.org and sign up. The webcast will also linger on our site after the roundtable. I hope this is useful for folks looking for additional forums for Q and A. Thanks and, again, Dave...well done.

Debi Brooks
New York, NY

Dear FRONTLINE,

The general public seem to have very little knowledge of thedisease. Primary care doctors also seem to have poor grasp ofthe severity of the illness,also how to treat the symptoms.

John Braski
Oconto, Wisconsin

Dear FRONTLINE,

I am curious to learn what kind of research has been done with stem cells in countries besides the US. It seems to me that we sometimes forget that the US is not the center of the universe.

Surely, stem cell research must have been advancing in Europe, Australia, Japan, China, Canada, or someplace during the past eight years? Now that American culture is rapidly declining, I think we will have to learn to look to other nations for scientific and medical advances. Is there any information about research and advancements made outside the US? My mother suffers from Parkinson's, and it would be comforting to learn that research has been continuing somewhere in the world.

Jeff DiPerna
Arlington, MA

Dear FRONTLINE,

Just a short note to say Thank You for sharing so much of your life as it was very inspiring and left me with a renewed sense of hope - - - and I will be doing something about my laziness and will get back to a regular exercise program.

I was diagnosed with Parkinson's three months shy of my 50th birthday (February 4th, 1996) and thankfully the progression has been relatively slow, but beginning to see changes as all of us do.

Besides writing to thank you I also have a couple suggestions for possibly slowing down your progression and for others as these two activities have helped me - - -accupuncture and Juice Plus. Accupuncture is self explanatory i believe and for those unfamiliar with Juice Plus it is the recommended 17 fruits, vegetables and grains in a capsule - - -truly a wonderful thing!. The positives that I have experienced are no sickness (flu's/colds) in the past 2 1/2 years, loss of 10 pounds, greater energy and improved flexibility in my joints and no longer struggeling with constipation which has been a problem for me all of my life. I have been receiving accupuncture treatments twice a week for the past 6 years and I highly recommend it to all Parkinson's patients.

Didn't mean to go on so will close for now and again Thank You and wishing you a good day and evening - - -one day at a time, right?

Plantation, FL

Dear FRONTLINE,

I always enjoy FL & watched the Parkinson's program, but it seemed too much of a political argument for embryonic stem cell research, without any mention whatsoever of the hopeful test results for Parkinson's treatment using adult stem cells, such as: http://www.leaderu.com/science/stemcelltestimony_turner.html

Fr. Kent Bowlds
Jackson, MS

Dear FRONTLINE,

Emerging clinical evidence suggests that jaw alignment therapy is effective at eleminating a significant percentage of tremmors and other movement disorders. I had an article published on this subject 6 months ago in the American Acadamy of Craniofacial Pain's quarterly. Article available on request.

dwight jennings
alameda, california

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posted january 29, 2009

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