I thought the show was really informative and touched on a lot of research issues. However, I noticed that Parkinson’s disease psychosis was never mentioned, and I know many people with Parkinson’s develop this condition. I am aware of a research study going on now for this condition and thought you might like to share it with those in need. The web site is www.parkinsonsmindstudy.com.
The company conducting this study has actually received grant money from the Michael J. Fox Foundation for their Parkinson’s research.
Just what I needed to know now -- started a med for Parkinson's last night. Thanks for the excellent reporting.
San Francisco, CA
I am a 29 year old female living with autosomal recessive genetic Parkinson's. I have had symptoms since 1996. I have 2 mutations on my PARK gene or parkin gene. I have been searching for a place to go to help ( a place I fit in) but have been unsuccessful. If you could steer me in the right direction I would truly appreciate it.
Please pass the following along to Michael J. Fox. It was written by a friend. I agree with the comments in it whole heartedly:We watched this program intently so I don't think we missed anything, but I truly thought the program missed a wonderful opportunity to show PD as much, more than a disease of tremors. That knowledge is all most people know about PD. To really educate the public about the widespread, relentless loss of normal function throughout the body that we, here, know all too well, was missing. I think the program was aimed solely at the stem cell debate, which is informative, but I had really hoped that there would be some footage aimed at providing a clearer picture of what it is to live with PD--when you lose the ability to drive, to walk, to swallow safely, incontinence, dementia, the ability to read, to carry on a conversation, the dreadful stress on the caregiver and the PWP's absolute dependence on another for everything and their sorrow about being so needy. Perhaps another program that shows the "face of PD at points further along the road with this disease" would result in a more informed public who might be moved to include donations to PD in their selection of causes to support. Am I alone in my disappointment?
My name is Mary Sontz, I am 42 and was diagnosed with Parkinsons Disease at the age of 40, my symptoms began when I was 35. I am a believer in exercise. I never exercised a day in my life until after I was diagnosed. Now I run my own class for Parkinsons patients. I am also the current President of the Maine Chapter of the American Parkinsons Association.
I have put myself out there with the media to make Parkinsons Disease a more common word, prior to my being diagnosed you never heard anything about it. Especially Young Onset. My Primary Care refused to believe that it was possible for someone my age to have PD..so I took it upon myself to find a Movement Disorder Specialist an within 30 minutes I had the answer I was expecting. I could start to live my life again.
My father was diagnosed with Parkinson's Disease when he was 58. He suffered until he was 75.
Unfortunately, about 10 years into the disease, he developed severe dementia which was not presented in the broadcast. People need to know that for a few patients, it is not just a physical disability. I am now 50 and I do wonder from time to time if this will be my fate too.
An interesting program, but superficial. It should have shown what PDers go through every day in terms of medications and medication side effects. Also unrealistically up-beat, biased toward upper middle class PDers who apparently don't have to deal with SS disability, etc. It's easier to cope if you are successfully self-employed or at the upper end of the social pyramid. Also I would like to have seen some alternative perspectives on the science of PD, such as that of the Parkinson's Recovery Project, and some discussion of alternative therapies such as acupuncture, massage and Reiki, which some PDers (including myself) have found to be very helpful.
My husband, a retired railroad executive (age 63), was diagnosed last week with early PD. Thank you Frontline for the intelligent but also scary information regarding PD. All of this is still very new to us. We have been married 42 years. His Neurologist has ordered Requip XL (titrating up from 2mg/day to 8mg/day over six weeks) She also ordered "NDR PT and OT". Is anyone familiar with NDR PT and OT? Our local Nova Care Rehabilatation does not offer it, so we are trying to get an "out of network" approval for this therapy. I could not find any explantion of NDR PT and OT on-line. We both exercise regularly and play golf. I think we both should join a Tai Chi Class and swimming. Any other suggestions?
An excellent presentation on a complex, emotion-charged topic. There are few other debates where the lines are so clearly defined regarding science, religion (or morality) and public policy.
Frankly, I believe that we have already crossed the moral boundary regarding human embryos when we utilize technology to maintain their viability outside the womb. At that point, we have taken charge of the future of the embryo. It seems obvious to me that the higher purpose for these embryos is to relieve human suffering rather than to be discarded.
Fayston , Vermont
I felt like I could finally exhale after watching this piece online.
My Taiwanese mother was diagnosed with PD shortly after I was born, when she was 36 years old. She seems to have bucked all the demographic trends (mostly white men over 65 etc.), which goes to show that this infuriating disease will continue to surprise even those who might think they're untouchable. She is now 67 - and has lived with PD for over 30 years now - and her progression has been slow AND painful. It has taken a toll on my whole family.
Michael J. Fox's analogy of hearing the bus come at you when you're stuck in the middle of the road really hit home for me, and put into words the anger, fear and ultimately sadness that I'm sure my mother feels - although with her lack of lucid speech now I may never know what she really thinks.
This piece was illuminating, touching, and much, MUCH needed. Thank you, Dave.
july 2004 was when I was diagnosed. Since then I treated PD as my issue. What hit me about this program is that it is our issue, and exercise. I'm on my way out the door to shovel last nights snow, and then I'm doing two things: Get involved and exercise. Thankyou
I am a 61 year old, former documentary filmmaker, and have lived with Parkinsons for twelve years now. Without question, this is most intelligent, honest, and emotionally accurate and artful film I that have seen to date. I salute Dave Iverson and the Frontline staff.Since I really can no longer make documentaries, five years ago, I turned my focus to my long time love of music. Last year a helped two gifted musicians, Slack Key Master Ledward Kaapana and Mike Kaawa and produced a CD of their live concert in Seattle. It was my first CD ever. I actually felt that their music was incredibly healing and wanted it be available for people as enjoyment and healing harmonies.Apparently, others liked it also as the CD “Force of Nature” was nominated for a Grammy as Best Hawaiian CD of the year. Whether it wins or not, I am happy that these humble rare musicians will be recognized for their immense talent and generosity of spirit.
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.
Thank you for broadcasting this show. I was neurologically injured from benzene, trichlorethane and other chemicals while working in Silicon Valley as a tech writer in the 1987. In 1992 I developed full body tremors, though docs have said isn't Parkinsons, but they do not know what it is. Keppra helps. However, exercise has consistently helped me control/calm my tremors and improve cognitive function.
I encourage others with movement disorders to do some sort of exercise, even if it means grabbing rails on the treadmill and walking or riding the bike at the gym.
San Francisco, CA
I was diagnosed with Parkinsons when I was 50 in 2000. It started with trembling in my right hand, rigidity, poor balance and fatique. I was determined that this disease was not going to get the best of me, and to date it has not. I believe that everyone is going to "get" something and if this is mine, then I can deal with it.
My Parkinsons is definitely progressive but my doctor and I are on top of it trying different meds and combinations. Since July I have been on a combination of Mirapex, Azilect and Carbidopa and no longer have tremers. I can now knit again, my world is very good; I can do this!
So Lake Tahoe, CA