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,

Thank you for putting on an excellent documentary.

My brother was 47 years old when he was diagnosed with idiopathic PD. He was unlucky to be diagnosed with colon cancer and a heart condition at the same time. He was a physician and wanted to contribute to the cure so three years later before he passed away he made arrangements to have his brain donated to the Mayo Clinic in Jacksonville Florida. After he died his brain was removed and sent to Florida where Dr Dickson examined the brain and sent me a full report which I circulated to all the physicians and neurologists that he had seen. Everyone of them thanked me profusely for the report and said that it would help them with future diagnoses and care of other patients.

When I received the report it gave me closure and helped me deal with the passing of my brother. Other people who have donated the brains of their loved ones also feel closure and relief.

Please note that 25% all people diagnosed with neurodegenerative disease are misdiagnosed. The only way to get an absolute diagnosis is postmortem.

If you have PD or a family member with PD please make arrangements well in advance to donate your brain for research. Brains from PD patients, family members and non-PD brains are needed.

By donating your brain in some small way you are helping to find a cure to this terrible disease. You will be helping future generations.

Solna Braude
Santa Clara, CA

Dear FRONTLINE,

Thank you for an informative and inspirational show! I am 59 was diagnosed 5 years ago and dealt with it primarily with denial(which I believe is underrated). I'd figured out the importance of exercise through experience (I'd been a runner, horseback rider, and otherwise outdoor person all my life).

This past year I couldn't get by denying my handicap--I don't have tremors,but seem to have virtually no postural reflexes left----so I fall alot. I've had to have stitches 3x in the past 9 mos. and probably should have had them two other times, but I hate the ER. I feel t he most hopeful I've felt in a long time tonight and I thank you for that! It was helpful also to hear that one fellow thought work was important--I teach in a university and this winter has been rough. I describe this disease as the "deconstruction of the self" and I know it will be very hard when Im no longer able to do therapy or teach. i would like a cure or big improvement in time for me to rock and otherwise care for my future grand children. Thank you!

Evavnston, IL

Dear FRONTLINE,

All of us respond to each others body language beginning in the instant contact or observation happens.The appearance, mannerisms, and movements of a person without Parkinson's reflect his inner feelings and disposition. A face embraced by a scowl,eyes that are fixed in a glare, a finger being pointed or a fist that is clenched and a lot of arm waving would indicate displeasure. A person with PD may be stern faced, have a head that is bowed down and have stiff movements and staggers about may not necessarily be in a state of turmoil. The loss of control of his muscles and poor feed back on what is actually happening can result in a disconnect from his real feelings. Although his body language is not inviting, the PD person can actually be feeling warm and friendly. Having less than attractive body language, plus the drooling and coughing, can result in a diminishing social network at a time that his sense of self already has been battered. If you choose to over come the body language barrier you may find yourself in the company of an unusual transformation. That grump has been eplaced.gone.

Donald Hitko
East Lansing, Mi

Dear FRONTLINE,

My story is My Mother, My Brother and Me. All three of us were diagnosed with a neurological disorder called Spasmodic Dysphonia. SD causes spasms and/or tremors of the vocal cords, making speech difficult to produce and to understand. As with Dave Iverson's family, our family is affected by something that is likely a combination of genetic and environmental factors. Kaiser Permanente and The Parkinsons Foundation are embarking on a research project looking at genetic/environmental factors in both disorders. Thank you so much to Dave Iverson and Frontline for bringing the personal experience, the science and the politics to public attention.

Francie Hornstein
Oakland, CA

Dear FRONTLINE,

I have been practicing for over 20 years, specializing in Parkinson's disease. What is abundantly clear from my personal experience is that the Parkinson's patients who are the most vigorously active and exercise regularly do far better and progress in their disease far more slowly. We are talking about slowing progress by years, perhaps even decades. Clearly there has been a need for exercise research in Parkinson's disease, but some of the definitive tools to study outcomes objectively were not available until recent years. It is heartening to see the early results of recent studies pointing to the direct effect of exercise on promoting growth factors and other neuroprotective and neuroregenerative processes in the brain. To all Parkinson's patients I say, Exercise (it preserves function!)!

Hayward, CA

Dear FRONTLINE,

Thank you for an inside view of Parkinson's that many people are not aware of or don't see.

I am young-onset, diagnosed 10 yrs ago at 42. These last 10 years there hasn't been a day or night go by that isn't shaped by my PD. I see what is ahead, I try to be patient, be hopeful, yet its always there. My father was diagnosed 4 yrs after me, he's now 81. Genetic, environmental or just coincidence?

Cindy Exton
Calgary, Alberta, Canada

Dear FRONTLINE,

I am 47 years old and I have been living with Parkinson's (Early Onset) for almost 10 years.Parkinson's has given to me more than it has taken from me. The most important lesson it has taught me is the value of a slower pace of life. Instead of trying to keep up with the daily "rat race," I am now content to run my own race at the pace that Parkinson's now dictates. I am more thoughtful and gracious from this slower perspective I now embrace. Like our dear friend Michael J. Fox, I too, am a lucky man.

John Kelly
Seattle, Washington

Dear FRONTLINE,

I am a single, 60 year old psychologist and artist who was diagnosed 12 years ago. I began seeing a neurologist who was affiliated with a research institute, and he prescribed Mirapex. Unfortunately, in the next year, I gained over 100 lbs, began drinking like a fish, had major insomnia, and (most out of character) began gambling online.My family thought I was going to die. I then saw a localphysician who is board certified in psychiatry and neurology. He immediately took me off the mirapex and my horrid compulsive symptoms began to abate. (Unfortunately, though, I developed sleep apnea during that horrid year, and while in a sleep study, I fell out of bed. Two months later my hip spontaneously broke and I spend the next two years in and out of hospitals trying to get it to heal.) Life was at a pretty low point at that time. I had missed lots of work and many of my patients had moved on to less crazy therapists. My income plummeted. But my friends and family stood by me, and in the last six years I have been slowly but steadily climbing out of the hole. I am now exercizing, doing yoga, and getting myofascial release massage. I continue to work as both psychologist and glass artist. I'm very blessed to have two careers that offer me so much. My PD is developing very slowly. I've been taking sinemet since the very beginning. I also take wellbutron for depression. Recently, I complained to my neurologist about my extreme fatigue at the end of the day. He suggested I try brief 'power' naps and also try using Provigil. They have both been very helpful. However, the provigil is very expensive even with insurance coverage, so I only take it when it's important to have energy through the day.

One of my main concerns as I age (I just turned sixty) is what will happen as I decline and who will take care of me. I am trying to be very conservative with money, expecting that I will need to hire caregivers. I'm also very interested in doing exercise that doesnt wear me out too much but does boost my stamina. It seems that there is a fine balance between how much to accept about the disease and how much to push. I'm still discovering that.

Jane Domke
Columbia, MO

Dear FRONTLINE,

I appreciate your tender handling of this life altering disease. It is a disease that robs even the strong and athletic of their own body's strength and grace.

My 53 year old husband has been living with his diagnosis for 20 years. He is now in late stage and unable to walk or stand, but has never given up. Ten years ago we had reason to hope for a cure, I hope that this show gives all Parkinsonians and their families a new hope.

P Smith
Salem, OR

Dear FRONTLINE,

What an amazing report, Frontline never ceases to open new doors to my household. Mr. Iverson brought life and light to a discussion all of us need to be a part of.Thank you for insprirng our family to be a part of helping those with Parkinson's.

Maya Mowilos
Seattle, WA

Dear FRONTLINE,

Both my parents have/had Parkinson's. My mom died Jan. 2008 of Parkinson's and my father has it too. Looking on the PBS web site tonight I researched a Calif. web site indicating possible pesticide related causes. There were four counties listed on the map. We lived in one of those counties from 1958-1963. We were surrounded by agriculture. It was so beautiful. I have always cherished the memories of that part of my childhood spent in that agricultural, rural Calif. town of Kingsburg. It was a perfect life. Now those memories have another side and because of both my parents being affected, I am very concerned with what happened back then in chemical applications. Please help if you have information.

Nancy Hummel
Steamboat Springs, Colorado

Dear FRONTLINE,

Just caught the last 20 minutes of your show and was so happy to see the part about the benefits of exercise. I KNOW it works. I have been diagnosed with Parkinson's for seven years now. People that don't know me find it hard to believe that I have it. And I tell them it's because I take part in an a Jazzercise class Monday through Thursday at 5:30 am and on Saturdays at 7:30 am. You've got to keep moving.

Carol Smith
Albuquerque, NM

Dear FRONTLINE,

Dear Fellow Parkinson People, I am 61 years old and was diagnosed with Parkinson's at 50. I had been exercising for 24 years when I was diagnosed and have continued to exercise 5 out of 7 days a week since diagnosis. I have had very slow progression of the disease and only in the last 2 years began having to take Stalevo. I take 200 mg. per day.

This program gave me some very valuable information about the effects of exercise on the brain. I thank PBS and the people of Frontline for airing this excellent program. I have believed for some time that my exercise was protecting me against the ravages of the disease and now I have proof that my hunch was right. I would like someone to study my brain to see if exercise has protected it.

Emily Nelson
Sheridan, WY

Dear FRONTLINE,

I just want to thank you for sharing your personal story. This was a very good show! I am a daughter and grandaughter of parkinsonians. In fact I was born after my dad's diagnosis, when he was 36 years old. He lived 40 years plus with PD. Today I work with Parkinsonians. I am thankful for the disease and the experience that it gave me on a personal level, because it has made me a knowledgeable, caring and understanding professional in the role I play at a Parkinson's Clinic.

I often say... PD is not a death sentence, it is a crappy card to be dealt but it is how you play the hand that counts and your show absolutely reaffirms that. I do wish that you would have focused a bit more on DBS(Deep Brain Stimulation), which of course is not a cure and does not work with everyone, however does cause much relief for so many.

Thank you so very much and I wish you much success in your "hand"

Julia Butler-Gorham
Livonia, MI

Dear FRONTLINE,

Thank you for a very educational program. I realize you had a limited amount of time. Perhaps in future programs you can provide even more education. A most vexing problem for the Parkinson's community has been the oft repeated fallacy that there are over 70 treatments/cures for PD and that PD is on that list. As a young onset patient, diagnosed at the age of 35, me and many others would be standing in line for a treatment/cure for PD if there was one. The National Institutes of Health has stated that it is the treatment for blood diseases that are commonly used. Adult stem cells have not successfully treated or cured PD. The integrity of FRONTLINE would be a big help in getting the word out about this matter. I have nothing but praise and sincere thanks for your program. It is a very educational and needed tool. I am just giving you my opinion for what you could discuss on a future program.

Harrisburg, PA

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posted january 29, 2009

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