Dear FRONTLINE,
God Bless you Dave Iverson for your wonderful and sensitive work in helping to inform the public about this disease. I have been a fan for many years of your work at WHA in Madison and believe you have really surpassed even those exceptional efforts with your work on this production!!
Eric Danielson
The Villages, Florida
Dear FRONTLINE,
I'd be interested in knowing what progress non-USA groups/drs. are making in the way of research for a cure for PD where there are no restrictions on stem cell research?
Milford, NJ
Dear FRONTLINE,
I enjoyed the program immensely. It was very thoughfully and respectfully done.
My father-in-law has Parkinson's disease. He is currently 77 years old and was diagnosed approximately 15 years ago. He had neuro-transmitters implanted in both sides of his brain, but they did not significantly change his symptoms. Rather than shaking, he has the type of Parkinson's that causes his muscles to freeze so that his steps are really stutter steps. He is now confined to a wheelchair and a walker for getting into the restroom and up stairs.
I was intrigued by a few things on the program. The first is the interaction between Parkinson's and exercise, and the second was the suggested link between Parkinson's and the environment. My father-in-law was an avid golfer and lived on the edge of golf courses for most of his life after 50. I often thought about the chemical applications on the golf courses that he must have been around almost constantly and what affect that may have had.
There was one aspect of the program that Michael J. Fox hinted at but was not unveiled and that is the link - if any - between alcohol consumption and Parkinson's. While my father-in-law's doctors have stated that they do not believe there is an association, I cannot help to believe that alcohol, which is not the best "food" for your brain, may have some negative impact on Parkinson's. Is there any research to support this?
Thank you for allowing me to ask my question and take part in this discussion.
Katonah, New York
Dear FRONTLINE,
I thoroughly enjoyed your program on Parkinson's Disease. My husband was diagnosed with it 5 years ago. With no family history,we struggled to find out what had caused it. A retired pharmacist, my husband had the theory that if he would wash his body in 70% alcohol daily it would keep him healthy. After many conversations we finally came to the conclusion that inhaling the alcohol and washing his body in it for so many years must have done some neurological damage.
When I heard tonight that environmental factors are another cause of the disease I wanted to share our experiences with you. It took a long time for my husband to admit that the alcohol had caused the damage, but he does believe it now.
I would love to have someone interview him. His mind is very sharp but he cannot get himself to exercise. He finally agreed to take anti depressants and seems to be coming out of the depression and feelings of hopelessness.
Now we are concentrating on getting him to exercise instead of staying in bed all day. I would like to contact Dr. Langston and share this information.
Thank you for the wonderful program.
isabel Balotin
Jacksonville, fl
Dear FRONTLINE,
My mother worked for Levis Strauss in El Paso for about 19 years before she was diagnosed with Parkinson's Disease. She went from functioning to non-functioning within 8 years when she finally passed on due to other complications brought on by the disease. Thinking there were genetic factors, I am constantly looking for the early signs of Parkinson's and think that every twitch could possibly be a symptom. However, see the program and seeing the possible environmental factors that could lead to the disease, make me believe that possible exposure to chemicals used in the different methods of laundering denim fabrics could have lead to the onslought of the disease. I know of at least one other person, my mother's best friend, who also worked at Levis Strauss for many years who also fell ill to what could never be determined to be Parkinson's, Alzheimer's, or perhaps a combination of the two.
It would be interesting to examine if there were any toxic chemical combinations used at this Levis plant that could have led to this.
Ivan Ramirez
El Paso, Texas
Dear FRONTLINE,
The frontline special on Parkinson's was at least as inspirational as it was informative. Activity in the face of a dramatic loss of physical grace is our best defense. As our small motor skills are stolen from us, paradoxically,our large motor exercise protects us and strengthens us for the long battle that lies ahead.
Now that I have my shoes on, I'm going for a run...
Ned Schofield
auburndale, ma
Dear FRONTLINE,
Thank you for sharing your story and shedding light on what I thought was such a devastating diagnosis. I am 54 years old and recently have been diagnosed with parkinson's and have spent most of this time just trying to get "my head around" the whole notion of the disease and trying to identify "what my timeline" is for maintaining a quality of life. Watching your reporting made me realize I need to refocus my efforts and take more steps to be proactive in working with the disease..in effect making friends with it and finding ways to work with it in my daily activities. Again thank you for putting a real face to the disease and talking about all of the various scientific trials and errors that are being undertaken to address the disease. I don't feel so hopeless regarding my future prospects.
Holland, Pennsylvania
Dear FRONTLINE,
Thank you so much for your wonderful program. I have had the disease for 21 years and had DBS 3 years ago at the Cleveland Clinic. I have tried to convince the insurance company that regular exercise provided by a local Health Center is necessary for my well being. Please help me convince them that this is a medical need and not just a whim.I am an accountant with a CPA and MBA and have looked for work for 12 years. How do I get a job? I am a Vietnam Vet and have asked for help from the VA but was told that they will help me when I turn 65. I would like to be in contact with anyone who can guide me
Bob Moore
Copley, Ohio
Dear FRONTLINE,
I. The program touched me so deeply as in my family there is familial Parkinson's. My father recently diagnosed at the age of 78, his oldest brother was diagnosed at the age of 53 and his youngest brother was diagnosed at 52. They both have since passed away. The youngest one just this past December after having lived with the disease for over 30 years. During the program so many of the issues raised have long been questions I've asked. What's the likelihood that 3 brothers would all be effected? The only sister had myesthenia gravis another neurological disease. What were they exposed to as children or is genetic?My dad is now in a nursing home due to the Parkinson's and the amount of care required daily. If anyone can offer me any programs I can connect with to either discuss the family component I would be open to this possibility.
Fran Pangakis
Baltimore, MD
Dear FRONTLINE,
This program is very timely for my family. Our 86 year-old father was recently diagnosed with Parkinson's. Sadly I believe he has been suffering with the disease for quite some time and was hiding it from us, now our family is dealing with it as a crisis.
Chesapeake, VA
Dear FRONTLINE,
Thanks for a very informative and interesting program. I am 51, diagnosed 3 years ago and am hopeful of further research.
Levittown, Pa
Dear FRONTLINE,
Shouldn't be torturing animals. Why don't they show what happened to that poor monkey after they did the brain scan? Haven't we learned already that testing on animals is NOT ACCEPTABLE under any circumstances. Too bad, it could've been decent show.
mulligan k
ny, ny
Dear FRONTLINE,
Dave Iverson's documentary is a major contribution to PD patients and those who care about and for them. Michael J. Fox who has done great things for Parkinson's research and encouraging those who have it. When he says he wouldn't go back, that it's a part of who he is, you have to marvel. He's ahead of me in positivity. I'm still in the "I'd have to think about that" group when asked if I'd take life without PD if given a chance.
But, even so, I have a few thoughts additional to the documentary that may be helpful:
(1)The brain can learn. It can forge new pathways. And so there is much to be said for people with PD taking up a creative activity. For me it was surprisingly painting. And certainly blogging keeps the brain searching for the right words - exercising in an unintentional quest to beat back the cognitive effects of PD. In a way I can thank Hillary Clinton, Barack Obama, John McCain, Sarah Palin, the whole cast really, for creating such intense feelings that had to be put into words.
(2)Every PD patient experiences it differently. Few are climbing Mt Everest. But most are doing something special within their limitations. The only way to understand people with PD is to listen rather than insist they be cheered or prodded to meet an artificial standard. It isn't constructive to tell a person with PD, as I've seen done and heard at workshops, "Oh, we all forget things," "Just get up and keep moving," "Everybody loses their balance," or "You look pretty good to me," especially if on that day the amount of forgetting is intense, the ability to move barely there.
(3)Doctors know less than we'd like to think. I'm not insulting them, here. It's just a fact most admit. And I'll share a little secret. The battle for research funding is brutal. And that is as it should be in order to make progress. But, if your doctor denies what you're saying, doesn't listen, seems disinterested or too busy, then brilliant as he or she may be, it's possible that you are outside of his or her realm of interest. He may be saving his time for patients who fit certain research criteria. You need a doctor who does listen, care, and help. You certainly can find such doctors at grant seeking, publish-or-perish institutions, but it's worth making sure you get one. Am I saying that some doctors turn away patients who don't yet have classic symptoms and are as yet outliers or ones in which they have no research interest? I'm saying I hope it's rare. And those who do so should make sure such patients get good care.
(4)And that brings me to something I'd like to pass on to Michael J. Fox even though he is already sensitive to patients. We could use more funding for training neurologists to communicate. And not only so they'll be nicer people. They need to learn more from patients if a cure is to come sooner rather than later. I was once in the room with a doctor who took a call from Michael J. Fox. He was listening attentively to him. That was encouraging. But he came back and did little of that with me. I moved on. Should have done so sooner, but at least it happened. And I found a great doctor.
See http://www.huffingtonpost.com/kathleen-reardon/im-no-michael-j-fox-but_b_163664.html
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Kathleen Reardon
Narragansett, RI
Dear FRONTLINE,
My name is Kim Marie Rozek and I am a caregiver my husband Rich was dx with PD 8 years ago. We are living our lives fro day to day with a very positive attitude.
My husband thinks a lot like Michael J Fox he would never go back even though he has to live with PD. We have the love to spread the word and help others. We have a cyber support group PD Talk Live. our web site is www.pdtalklive.com. We would love to have you take a listen.Thank you,
Kim Marie Rozek
Merrillville, Indiana
Dear FRONTLINE,
As a psychotherapist specializing in body -oriented psychotherapy & the daughter of a father who is currently in his 11th year of Parkinson's (in a nursing home), I am curious about factors that may precipitate the disease specifically anxiety & post traumatic stress disorder. My father was in the Italian front during WWII in the 10th Mountain division & came home with what was then called "shell shock". At that time treatment was analytic so the neurologic components of trauma were not as clarified as they are today. The father I knew as a child was constantly moving often involved in rigorous physical exercise from downhill skiing & rock climbing to tennis or golf when he was not working. (He continues to attend every exercise class given at the nursing home though he is wheel chair bound.)
What about early interventions to mediate anxiety and the effects of extreme neurologic stress? their relationship to moderating the effects of PD or maybe even acting as a preventive? As a yoga & meditation practitioner, I naturally think of these resources. There is also biofeedback & other ways to work effectively with anxiety reduction.
Leisha Douglas
Katonah, NY
