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,

I very much enjoyed this program, which I caught in rerun in the middle of the night when I could not sleep.

I am a 58 year old physician diagnosed with Parkinson's Disease three years ago. I can personally attest to the importance of exercise. I have been a regular at the gym for 8 years, but now if I miss a week I become immobilized with pain from muscle spasm.

Though I am still working, the Parkinson's has slowed me down. This is as much from a change in my empathy level, my listening ear, as from disability.

I also took up painting, coincidentally or not, just before the diagnosis, and this allows me to "zone out" and forget about the PD. The remark of one patient, that it is there when you get up, and until you go to bed (not to mention when you try to roll over in the night), rang very true.

Personally, I think the emphasis on stem cell research is misguided. More research should be done on causes of PD and ways to delay progression, and in the end this may not involve stem cells.

Gwen Spurll
Montreal, Quebec

Dear FRONTLINE,

My daughter has been fortunate to do her MSc. under the guidanceof Dr. Quincy Almeida, founder of the MDRC (Movement Disorders Rehabilitation Centre) in Waterloo, Ontario through Wilfrid Laurier University.

She has seen first hand the positive effects and motor improvements in Parkinson's patients that voluntarily participate in guided exercise programs at their facility.Targetted exercise has been previously underestimated in delaying onset and progression of PD, while research dollars have been concentrated in development of pharmaceutical or surgically invasive treatments.While the cost of research is high, the cost of waiting for a cure is much higher.

In the meantime, the no cost solution of remaining active is the most available and possibly most advantageous tool available to those buying time in their daily battle with PD like my own Mom, diagnosed 19 years ago and stillactive at 84.

Patricia King
Lively, Ontario, CANADA

Dear FRONTLINE,

Thank you for the program on PD. I happened to be home Tuesday evening from teaching, and turned on the TV. It was very important for me to see this program. Research is being done and [there was] the political lack of interest by the last administration for PD research.

I was diagnosted in December 2007, after having symptoms for two years - falling, stiffness and joint pain. I thought I had RA, or a slipped disc. In the summer of 2007 I was prescribed medications for RA. Nothing helped.

Then one Sunday night in December 2007, I fell out of bed and was paralysed. The rescue squad took me to a local hospital. And the doctor and nurses were terrible. The doctor, who didn't even tell me her name, said I had a 'dry socket' because I had a tooth pulled the Thursday prior to going into the ER. Then the the nurse told me I had to leave - I didn't have a fever any more, so she pushed me , actually pushed me - into the waiting room and told me, "your cab will be here." No one waited with me and if I had fallen again, I wouldn't have been able to get up.The nice cab driver helped me into the taxi and into my house.I will never go to another ER as long as I live.

But what resulted of that Sunday experience, I called one of my students who worked for a neurological group and I now have an excellent neurologist and I'm on Levadopa/Carbadopa. It is a miracle drug.I also appreciate the information on exercise. I am going to strive to do some running again. My thanks to you and PBS, I'm a big fan of Frontline.

Tanya Higgins
Williamsburg, VA

Dear FRONTLINE,

Seeing "My Father, My Brother and Me" produced an insight for me. I know all the arguments against using embryonic stem cells and they all seem specious to me. Potential for human life does not come close to matching life itself.

I was stunned to see a clergyman say that if we use embryos it is somehow akin to using death-row inmates since they'll be dying anyway. What kind of a religion or society would compare a clump of undifferentiated cells to a living breathing human being? How can a human being much less a clergyman speak up for a potential life and not decry the barbarity of capital punishment? That he said these things makes his argument senseless.

When I was young nurse studying comparative embryology, I was shown that the early embryos of many species look pretty much alike and most are, as it was said in the programme, impossible to see without a microscope. As my studies continued, I learned about conception and birth. One of the nuggets that has stuck with after all these years is this. The products of conception don't always,or maybe not even usually, implant and are flushed out with someone's next menstrual period. If nature, or if you prefer, G-d, doesn't value all fertilized ova, why should we?

What struck me so forcefully and for the first time as I watched the documentary, was this. Can we change the argument by reframing the discussion? When a infant is still-born, the parents are often asked to donate the baby's organs for transplant. These days, more and more and more of them, do that very thing.

How about asking parents who store frozen embryos to give permission for transplant when they have had all the children that they want and there are still embryos of theirs in storage. Not everyone will want their last embryos implanted, at least I hope not. Surely enough people will agree to having their embryos used for the harvesting, study and transplantion of embryonic stem cells to bring help to so many who suffer with innumerable conditions that could potentially be helped by this incredible resource.

Wini Atlas
Vienna, VA

Dear FRONTLINE,

Dave, thank you so very much for sharing your family story. My husband and I watched the program with deep respect for you and others who are living with this disease. Our family lives with cancer and MS and received much inspiration from your story.

Janet DuBois-Mars
Petaluma, CA

Dear FRONTLINE,

I only got to watch part of the show. My Mother learned of her Parkinsons disease in 2000 when a doctor noticed her hand writing. I agree with several others about the disease being so much more than just tremors. My mom can't cook, bath, or even dress herself anymore. She is very depressed and cries several times a day. We also recently learned that when a person who has a brain disorder such as Parkinsons developes an infection often goes crazy. My mother recently had a bad kidney infection and was admitted to the hospital the infection was so bad that she forgot where she was and started talking crazy and going wild, so much so that we had to restrain her. I few days later after the meds she didn't even remember it. This was heart breaking to our family.

Last year she entered a study using Neupro patches. This was a miracle drug for her. After a few months she was doing everything for herself, you couldn't even tell she had the disease. Then late last year the fda pulled the patches off the market due to problems with the patch. We were all heartbroke. We have tried everything to get these patches again with no luck. Everyone at Neupro says they are working on it. It is very dishearting to know there is something out there that can help my mother and we can't get it. We try very had to stay positive for hersake, but seeing her day to day battles is tough on us all.

Jonesville, nc

Dear FRONTLINE,

Thank you Dave, Dr. Isacson and others for an excellent program/interview. Dr. Lah at Emory diagnosed my 74-yr-old husband with DLB (Dementia with Lewy bodies) 3 years ago. Spatial map and executive function losses came along with parkinsonism and falls. Adjusting doses of Sinemet and transdermal Exelon help, along with walking everyday and exercising with a DVD, "FallStop", is helping posture and balance. Do you have comments that will help more physician awareness of DLB and how to distinguish it from AD and PD, particularly with regard to anti-psychotic drug sensitivity/ hallucinations? Too many elderly have problems from taking too much or too many drugs.

Woodstock, GA

FRONTLINE's editors respond:

You raise an interesting point. Some physicians even say that we should refer to PD as Parkinson's Syndrome, because there are actually different paths the disease takes. And as you note, some very specific conditions that carry additional symtoms. I agree that this represents a constant challenge for patients, caregivers and physicians. You may want to contact one of the Parkinson's organizations in your area about what can be done to further the overall educational effort. Thank you for watching and for sharing your views.Dave IversonCorrespondent/co-producer

Dear FRONTLINE,

The TV program was excellent. I think it would have been even better if it had highlighted the following information:

"...the rate of progression can vary widely from one person to another. This is an important point...What they don't know about is the large number of people whose condition remains mild and treatable for many years. The early symptoms of the disease are all some people ever experience..."

The quote is from p210, Keep your Brain Young (Wiley, 2002), Guy McKhann, MD, Founding Chairman, and Prof of Neurology Dept, Johns Hopkins Medical School.

Shouldn't we be studying those who do better than usual, for clues to better outcomes, and to help people to be more optimistic? The health psychology literature shows that expectancy effects can be quite strong.

Bob Fuhr
Menlo Park, CA

Dear FRONTLINE,

I applaud your presentation of Parkinson's Disease because of its frequency and devastating effects. My hopes would be that, in the future,a more spiritually enlightened audience will see the complete abolition of medical testing on animals, especially primates; since, it has been proven that this inhumane treatment of animals is indeed outdated with the efficacy of stem cells in research. I'm sure most of my scientific and professional colleagues would agree with this. T. Long, M.D.

Thomas Long
Lake Havasu City, Arizona

Dear FRONTLINE,

I thought the program was very up-to-date with information on the progress of curing Parkinson's Disease - until the segment on testing the effect of exercise with monkeys. You did not mention ANY moral issues with the inhumane testing of animals, especially primates, as you did with the stem cell issue. In this segment, monkeys' brains were injected with the chemical that causes Parkinson's Disease. Tests on the benefits of exercise do not need to be performed on animals - needlessly making them suffer the many devastating effects of the disease!!

PLEASE DO A PROGRAM ON THE INHUMANE TREATMENT OF ANIMALS IN MEDICAL TESTING. YOU WILL PROBABLY HAVE THE LARGEST AUDIENCE EVER FOR SUCH A PROGRAM!!

Carolyn Long
Lake Havasu City, Arizona

Dear FRONTLINE,

I was diagnosed with Parkinson's at the age of 25. I just turned 30, and I appreciated Iverson's message on living. Just living, whether or not it is with Parkinson's is a far greater measure of your exsistence and your humanity than to choose not live at all.

I never thought of time as an ally. It brought a new perspective to my experience, as I am the exception to a population that is typically categorized as Young Onset Parkinson's. I fall within the Young-Young onset population and view time as a huge unknown. The uncertainty of when and how long influence my decisions for the future. However, I live for tomorrow and find time can stretch forever if you find happiness around you and through those that support you.

Julie Tanay
Iowa City , Iowa

Dear FRONTLINE,

My father has Parkinson's and he has had it since 2001. The first time I realized what this was I thought I was going to lose my father forever! I have to say this has made me a stronger person as I am dealing with his pain. We have been though so much that doctors have not shared with us. The hallucinations from medication, falling down, and his depression. My father is a strong man with a big heart and he struggles everyday fighting for his life. I love you dad.

Michelle Szastak
Kalamazoo, Mi

Dear FRONTLINE,

I was very disappointed in this program, which I supposed to be about Parkinson's Disease. My husband has had PD for many years and we were both eager view it. Instead, we saw a program about the political angle--insinuating that President Bush banned all stem cell research [when only embryonic stem cell research was affected], thereby dashing the collective hopes of PD patients everywhere. This is ludicrous and deliberately misleading.

Little or no mention was made of the many families struggling to pay for care of their loved ones. It seems that all money goes to research grants and none for the ever-increasing care needs for the many PD victims, especially for the many who also have dementia. Instead, we got the poster boy for PD, Michael J. Fox.

There was also little or no attention paid to the actions and efficacy of PD drugs, such as Sinemet and Stalevo, while it was implied that Aricept could reverse dementia, contradicting current knowledge.

Patricia Abson
Ione, WA

Dear FRONTLINE,

The old Oakland army base hasn't been developed yet. it would make a great site for an international stem cell receiving hospital. It's halfway btwn Mexico and Canada, and has easy access to Asia. There will be a lot of research at Hunter's Point in San Francisco, but I haven't heard anything about a hospital for patient care.My dad died of Parkinson's. I have essential tremor and have had a stem cell transplant for BrCa. The transplant saved my life. Best of luck to everyone.

Sandy Bulman
Oakland, California

Dear FRONTLINE,

I was diagnosed with Parkinosn's disease in 1983 at the age of 39. My two children were three and four years old and I was just getting a career underway with a car company. I had previously been a Navy pilot, and an English teacher at the University of California. It had taken 12 years to discover the source of my manifold symptoms, none of which seemed to make sense as a total picture. In a sense, the diagnosis was a relief, since PD is a life sentence rather than a death sentence..

Levodopa/carbidopa was a godsend, allowing me to return to a full schedule of physical activities I enjoyed - running, hiking, biking, but it did cost me my pilot's license. I started running on my own a few days after my first tablet of Sinemet over 25 years ago, and have not stopped since, other than a few down times for injuries. #months after my diagnossi I ran my first 5k road run. A year later I ran my first 1/2 marathon. It took 12 years to build the courage to run the full marathon, my first coming in 1996 at the LA Marathon. My next, coming up in March, will be my 20th,when I'll be just a month shy of turning 65. I'm not a gifted runner, and do not compete with the top athletes of my age group, but I consider all of us who are still running marathons in their mid-60's as "elite" athletes. We all have challenges of some sort (mine happens to be Parkinosn's disease) but we have decided to take charge of our condition, to challenge ourselves, and to try to get the most we can out of this gift of life. I use my running as a tool for inspiring other PD patients to take control of their own lives through Team Parkinson. My wife Edna and I are the national co-chairs of Team P and we work didligently to raise awareness and money for PD research. I enjoyed the show very much and was very pleased to see the emphasis on exercise as a tool for treating the disease. There is a gathering body of evidence that the running I have been doing for 25 years has made huge difference in my own health, and slowed the progress of PD considerably.

John Ball
Whittier, California

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posted january 29, 2009

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