Thanks! ... And The Challenges We Share

Hi!

I'm looking forward to viewing the show when its aired. I was diagnosed in April, 2007, at 61 years of age and am taking a low dose of Requip. As a children's book author and illustrator, my main concern has been to continue to be able to draw and type. I'm right handed, and the disease is mainly evident on that side. I've started to practice cursive writing and drawing with my left hand.

The idea that exercise might slow the progression is intriguing. I was inspired by watching the video of that rather sad-looking monkey and walked on my treadmill too fast and too long. I felt like a fool (monkey see, monkey do!!) when I was in pain with sore joints for the next few days.

I had a good friend with PD who did poorly, so I am hopeful that new treatments are discovered and approved soon. Some of the more drastic ones being used today are not very appealing. I have an artificial heart valve, and have been on warfarin for 28 years, so my case may be a bit complicated.

One aspect of this illness that I find strange is the lack of communication on the Internet between patients. I've tried to join a couple of lists or chat rooms and there is virtually no one out there participating. Even this site, inviting people to comment, seems incredibly quiet! I'm wondering if this is because there's so much information available, no one has questions? Or is it because most patients are in their 60's and older and are not interested in using computers to discuss their private lives? Or . . . ?

Thanks for "listening!"
Sheila Kelly Welch

Dave,
You are getting it right. I am recently diagnosed. You have a very uplifting site.
Thanks,
Mark

Dear Sheila,
Thank you for your comment. We're glad you liked the video and hope your joints are feeling better by now! One reason this site may seem quiet is that we launched it very recently with absolutely no fanfare... The idea was to do a slow and quiet "rollout" that will build and be supported by more promotion as we get closer to our broadcast date later this year. Indeed our "comments" feature just went live last week and we've been delighted to see that people are already beginning to participate. So we are still in the very early days of this experiment. I'm curious: how did you find us?

Thank you for sharing your journey and your research with the world! I too have Parkinson's Disease, I was diagnosed in 2005 at 36 years old. Something that I personally struggle with is my age. I am too young to have this disease. I have other more important things to concentrate on such as my family (homework, activities, household chores), my career (I've cut back to a 4 day work week), my garden, staying in touch with extended family & friends, the list goes on and on. I'm finding it difficult to make time to attend support group meetings, to be a PD advocate, to go to doctor's appointments, to exercise, to take pills, to get plenty of rest and to stay in a positive frame of mind. Yes, I suffer from depression; apparently its common for people with Parkinson's to have this "side-effect".

I am hoping that your documentary includes discussions about Depression, Alternative Therapies, Early Onset Parkinson's Disease, Prevention.

Thank you so much for helping to educate people about this disease.

Hello Michael,
I found your site through Michael J. Fox's web site. Thanks for working on this project!

HI,

I look forward to Wednesdays when I can visit the site and read the latest. I was diagnosed in August of 2006. I can relate to M. Fox's thought that the PD journey is different for everyone' (as I try to find what is happening to me and what to expect) and that there is 'no operating manual' as I am often frustrated in my attempts to learn more and make decisions about my care.

This site helps me deal with the feeling of isolation, because no one (I know) knows what I have gone through and what I am going through...

I am very much looking forward to the Frontline show this spring. When I get the date I plan to let my family and some of my friends know, hoping that it will inform them about PD.

Thank you.

I was diagnosed with Parkinson's 23 years ago. Since I believe that life is 10% of what happens to you…and 90% of how you respond to it, I determined I had a choice... I could wake up every morning and choose to spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or I could be thankful for the ones that do work.

Circumstances may determine our lives, but I also believe we can shape our lives by what we make of our circumstances.
So after I was diagnosed, I became very active with the Parkinson community and now spend approximately 12-16 hours a day working on Parkinson's and stem cell (advocacy) related activities at the local, state and/or national levels. Because of that, I have been privileged to receive numerous local, state and national awards and recognition in all types of publications.

One of my more recent projects is a PowerPoint presentation that I give on "HOPE" which contains music and animation. If you would like to have a written copy or DVD of it, I would be happy to send it to you and you are certainly welcome to use it for ideas.
Good luck...and I look forward to seeing the show soon.

Nina Brown
Secretary/Founding Board Member, The Alliance for Medical Research
(http://www.tamr-ed.org)
Founding Board Member, Texans for Advancement of Medical Research
(http://www.txamr.org)
Vice President/Secretary, Houston Area Parkinson Society
(http://www.hapsonline.org)
State Coordinator, Parkinson's Action Network
(http://www.parkinsonsaction.org)

Diagnosed at 46 yrs. in 2001, I spent the first 6 months imagining worst case scenarios. Then I decided I was living with PD, not dying with it.

Exercise, exercise, exercise. Stay strong and physically active because balance and coordination are improved by it. Social activity is as important. When I first learned of my PD, it was easier to tell people about it. When they knew, I had an opportunity to teach them about the disease and my anxiety and nervousness about symptoms was diminished.

It is clear to most people that we have something slightly wrong with us. Our gait or the way we hold an arm indicates a problem, so we are not fooling anyone. Understanding makes people more comfortable with us and we can relax, too.

Gentlemen/Ladies:
Great idea for a presentation. I have PD for 5 years now. It is inexorably progressing. As a 78 year old, spry and active, it is discouraging. However, the best information i have found after much searching is from Dr. David Heydrick, M.D. of of Fredrick, Maryland. Dr. Heydrick was an engineer before he become a practising neurologist. After proacticing for a few years, he was diagnosed with PD. He uses an engineering approach (in my opinion, this is more results oriented than most medical approaches) to analyzing the available research data, and comes up with what he feels is the best available treatment to use right now. This involves a very heavy dose of exercise, stress reduction, and proper eating. He can show good results in his own case, and has many others where the progression of PD appears to have been slowed very significantly.

See: www.parkinsonspyramid.com

bill Walkington

Hi!

I was diagnosed with PD in August 2005. I had just the month before retired from a job that I loved. In September ny housemate of 30 years was diagnosed wuth esophageal cancder. In early October my 88 year old father became ill in the neighboring state and I went down to be with him. He was hospitalized from early October until his death in November 2005. Needless to say, my issues of learning to deal with PD came as a real afterthought.

Of all the losses I sustained in that period of time, the challenge of accepting PD as a part of my life has been the toughest. I am blessed because I don't have the tremors but I have lost my sense of balance. I am no longer driving, and my Parkinsons related visual problems have made it very difficult to read on work on the computer.
My counselor who has Lupus tells me that I must make friends with my PD and leaarn to accomodate it. Can anybody give me some insight into how one goes about making friends with PD?

THanks,
Bronna Willis
lYNchburg. va

I'M SO LOOKING FORWARD TO YOUR "REPORT ON PARKINSON'S DISEASE." I WAS DIAGNOSED IN 2000 AT THE AGE OF 58. IT TOOK 18 MONTHS TO GET A DIAGNOSIS, BUT ONCE DONE I NEVER LOOKED BACK. SINCE THAT TIME I HAVE BECOME INVOLVED WITH THE AMERICAN PARKINSON DISEASE ASSOCIATION HERE ON STATEN ISLAND WHERE I VOLUNTEER AS WELL AS THE SALVATORE & ELENA ESPOSITO INFORMATION & REFERRAL CENTER AS WELL AS BEING CO -COORDINATOR OF THE SUPPORT GROUP. I BELIEVE AWARENESS IS VERY IMPORTANT NOT ONLY TO GET THE FUNDING FOR RESEARCH BUT MOSTLY TO GET TO THOSE PEOPLE WHO FEEL ISOLATED AND NEED TO KNOW THERE ARE LOTS OF PEOPLE LIKE THEM WILLING TO SHARE EXPERIENCES. WE NEED TO EXERCISE OUR MINDS AND BODIES AND IT CAN BE FUN TOO. THANKS AGAIN SUSIE

I have a friend in her 50's who is living in an assisted living home. She cannot find any relief for her Parkinson's, which causes her to move constantly. She has lost a tremendous amount of weight. Often, her constant wild movements confine her to a power wheelchair. I have printed monthly newsletters for her from your group, but I have never seen any posting or comment from others about the constant movements. She does have friends at the assisted living home, but none with anything as debilitating as her Parkinson's.
She did receive a little relief at first from the patch, but it does not help now. Does anyone have any suggestions or help?

Hello David and Pat. I am following your journey with concern and hope. My father died several years ago from complications of Parkinson's at age 87. The disease robbed him of his independance and his vitality. I dealt with the progression of the disease from a distance and always suspected that the treatment of the disease caused as many of the symptoms as the disease itself. My thoughts are with you.

Jane Murray Flynn
Duluth, Georgia

HI David

I was just diagnosed with PD in January 2008. You web site is one that I keep on coming back to for information, insight, medical news etc. I have started my own exercise program and truly believe that I feel better on my "workout days". I am looking forward to your special in the spring. Thank you for providing a site where individuals dealing with PD can come together. Hopefully more of us will take the step to help one another through this site.
Claudia

I'm 47. My hand began tremoring a year ago. By the time I went to a neurologist 3 of my extremities and my core were tremoring. I was diagnosed with Parkinson's 3 weeks ago. The doctor told me to worry about the things I could control and not about the things I couldn't. He gave me meds and basicly said "have a nice life." I feel very alone. I don't want to know how "bad" things might get, it makes me too sad. My limited research and intuition says exercise, high anti-oxidants, high anti-inflamitory foods, hydration, low stress (that's a joke) good attitude are what I need to do. Presently, I would also classify myself as "PD light." I want to stay that way! I don't want to wake up in 5-10 years with severe tremors only to realize that I guessed wrong about what would keep the tremors at bay. Is it possible to keep my tremors at bay forever?

I am going to watch this program. My husbands Father has had PD for almost 10 years and is in the last stages. He is 70 and we are looking for any new meds or something that can help him. He is totally dependant on us now, he is on a feeding tube and requires 24/7 care. He can talk some, on his good days. He still has alot he wants to do and we want his quility of life to be great and he wants to get better and stornger. He is on the neuorpo patch 2mg. it help but now may becoming less effective. Dad has other health problems as well. Diabetes, CHF. please let me know if there is anything else out there. He was turned down for the brain surgery. One more question, what is the gene transfer therapy and has it been a success and approved by FDA?

I have had Parkinson symptoms for five years, tried two Neuroligist and all kinds of medicines. For a month I have been using the Neupro Patch and Azilect. I was feeling better until I read today that the patch had been recalled. PD has changed mine and my husbands lives drastically. I am not bothered with tremors, but my balance and coordination makes it impossible to walk without holding on with both hands, and there is not much to do without using your hands. The computer, Soduko Puzzles, and my stationery bicycle and taking care of my hygiene is how is spend my time. I will be 65 years old tomorrow 3/22 and I would like to experience some new help for my PD before I leave this life. I like reading ever ones comments.

Hello,

Thank you for doing this and hopefully raising awareness.

I was diagnosed in Nov 2004 at the age of 35. I am also lucky that my PD is progressing slowly. (I like your term PD Light)
Still, I have found it a challenge to balance work, family and PD. I am a wife, a mother and have a full time career. I have made the choice that it will not stop me from having the fullest life I can.

I completely agree with the comment of an earlier poster that life is about how we react to what we are given.

I look forward to seeing the show when it airs!

Keep up the great work.

Janice
Northboro, MA

Hello,
First, thanks for setting up this website. It is wonderful! I think any good quality information people can share with others about this disease, is the best way to let people know they are not alone and that there is help out there. You just need to know where to go.

I am 50 yrs old and was diagnosed 6 yrs ago. I probably have had PD much longer than that, but was never diagnosed because no one looked for it in a younger person. I am a wife, mother, nurse, quilter, volunteer. I do not, however, work as a nurse at the present time. Multi tasking, is not something I can do very well anymore. I loved the comment an earlier woman sent in about making a choice: I make a choice everyday. I can get up and be depressed about my condition, or I can get up and live my life to the fullest ability I have. I choose to live my life to the fullest! I started my own exercise program, after getting an ok from my doctor, after going to a seminar held in my city where Davis Phinney was the speaker. I have to tell you that exercise has been my lifesaver! I was using a walker/cane a year ago, and I use nothing now. I work out 3 times a week with hydraulic weights, treadmill, exercise bike, stretching, arc trainer, and I take walks whenever I can. I also took an exercise class based on the book by John Argue which really helped me too.

I am determined to not let PD rule my life. It is a part of me, but it is not all of me! I am a very positive person, but yes, I do have down days and that is ok. I don't like taking all the meds i do, but they keep me going and that is what is important. I may not be able to do all the things I did before, but I have learned much about life, patience, what is really important, and that having a chronic illness is not the end of the world. Surround yourself with positive people who support you, love you, and uplift you. Life is way to short not to enjoy every moment!

Again, thanks for all you are doing.
Melanie Drake,
Cincinnati, Ohio

Hi Janice Higgins!

We are practically neighbors! My daughter told me that a person from Northborough posted a comment here. I live in Southborough, I work full time... still getting used to the diagnosis.

Sheila Harper

I was diagnosed 2 years ago at age 49. For the most part I plug along and have not let the PD get in the way of my everyday life....career, husband and hockey Dad, to namae a few.

I would classify myself as "PD Lite" as the tremors are slight in nature and are located in my left forearm only. However, I have begun experience muscle stiffness in my left arm and lower leg and this can this not easy to deal with when I am not active. Putting the tie on in the morning is slowing becoming a challenge.

Like most folks have said before me, exercise is the key, more I do, the better I feel. My doctor (number 3) wants to put me on l-dopa but I have resisted to date. I have similar feelings as Mary with regards to the doctor's approach to prescribing the meds and "have a nice life".

I look forward to your show and to reseaching the many links and suggestions found on this site.

Nice to know I am not alone.

Keep active has become my moto.

Swampscott, MA

My husband is 52 yrs old and was dx in oct 07. I'm sure he has had PD for several years but dr's never looked into that aspect of his symptoms. He is taking carbidopa-levidopa 25/100mg 3 times a day. He has a great neurologist. She spends time with us and is interested in his life- not just his health. His left side is affected. He drags his leg and his arm shakes so that he doesn't use it much. Our daughter is becoming a massage therapist so she is using him as her case study and that has helped him a great deal in keeping him more flexible and getting on track to an exercise program and things that I can help him do when she isn't around. I am interested in reading all your posts, since I am a caregiver and need to know as much as I can to take care of my husband. We have been married for 28 years and still have 2 young children at home. We own our own business so John can work when he feels like it or stay home if he needs to. I will be watching for the broadcast on PD. I ordered a DVD from the Washington PD association which helped me understand quite a bit. But from what I am reading, everyone is affected differently. My husband also has very low testosterone and has to use meds for that. The dr isn't sure if that is related to PD or just something else that is going on. He has sleep apnea and high insulin resistance. We are trying very hard to keep him active and healthy. Thanks in advance for listening to me. Tammi
Clarkston, Washington