For me, it wasn't until I took sinemet that I realized that I might have PD. I had symptoms for maybe fifteen years or more, but I never put it together. I had a sleep study that showed that I was shaking a lot at night. The doctor gave me sinemet. It was amazing how much better I felt with the sinemet.

I can admit now that I was a workaholic, and probably still would be if my physical vehicle would allow it. I kept working 60 or 70 hour weeks and just ignored the fact that I was slowly deteriorating. Other people noticed it and would tell me I looked terrible or that I needed to see a doctor. I just ignored their advice and kept pushing myself.

Then, within a period of a few months, the daytime somnolence, the spasms, the rigidity, the bradykinesia, the problems walking, the tendency to fall, the pain, and generally feeling miserable just took control of my life. These days, feeling good is rare. I do experience the variability. I too have had the experience of having a lousy day because of being stressed before my morning sinemet took affect.

Karl

I have the same idea as reverett123. There just must be a solution or explanation. I also like the idea of designing a study.

I can still write web software--just not as fast as I used to. I also have some web sites available to me where I could run a program to collect information. I visualize some sort of structured journal where many PWP could enter information. This information could include such things as stress, diet, general wellness, specific symptom severity, and a few other things that we might think of. I would be willing to do the programming if others would be willing to help design the study and participate in the study.

I may even have some software already written that could be adapted to this purpose. It's a major piece of work that I wrote for the university health and wellness department that was known as Health Quest. (A bit ironic, huh?) It ran for seven or eight years, but in time, people lost interest. I wrote it on my own time as a community service, so I own the code.

What do you think?

Karl

Progressing
 

It has been just recently that I have noticed the change. I used to forget my meds and it wouldn't have a lot of impact but now I notice after about 3 hours from the first dose that I need more meds. Yesterday I had an experience which I will describe as an off day. I decided to walk to the bank about 4 blocks from my house, the weather was very hot and humid and I got about half way and felt like I wasn't going to make it the rest of the way. I almost staggered to the bank and decided to call for a ride home. The people at the bank looked at me with great concern and gave me a chair to sit down. I was dizzy and the dystonia in my left side was quite painful. This in turn affected my concentration, I was a wreck. My son who came to give me a ride was quite taken back. It was the first time he has seen me when my meds weren't working. I have had about 4 years of relatively smooth sailing and now there has been a change. Things aren't coming so easily now, sleep, movement, thinking, all the things we take for granted until we lose them. I feel like " any " stress affects me, I am starting to avoid situations such as cooking a dinner for the whole family or going away for any length of time because I don't know what I will be feeling like that day. I think that P.D. is gradually stealing my life and I don't like the feeling of losing control.

Oyster / Stevem (not intending to hi jack thread) ...
 

Agree 100% with you Stevem, I put off Sinamet for a while due to fear of dysks. On reflection this was a bad thing, no one knows how Sinamet will affect them, why delay taking something that can help you so much, (within reason).

Oyster, in your position I would revisit your Neuro and discuss drug options, who cares how long other people go without meds. You have no idea of the personal circumstances of those others, (e.g. if in a job they may need more meds), or their state of health or willingness to accept symptoms. Focus on yourself.

Neil.

I haven't posted in a while, life has sort of become a bit overwhelming lately. My husband, Rich, is now in the process of going through the disability paperwork and we are making an appt. with a NYS disability dr. to determine if he is, in fact, disabled. Unfortunately, Rich is. This is probably off-topic but I'm posting anyway because everyone here seems to at some point in time attain some good results with Sinimet. Rich has no response. Yesterday we went to the neurologist and he said everyone is different. So, at this stage, while I know I sound absurd, I am envious of anyone who has even the most remote response to their medication. I am at a loss as to try to help him. It seems there is nothing that can be done for Rich. He lays on the couch 24 hrs. a day, seven days a week. He is weak and depressed. Earlier he was on Mirapex but they thought it made his state of mind more paranoid than it already had been. He didn't really respond to that either. I don't know. His Sinimet was increased with no difference in response so yesterday the dr. reduced it back to 2x/day, controlled release. Why bother at all? He remains weak on his right side, no arm swing, can't write anything, struggles to cut his food, has a bad tremor and other things, but this is just two years into his diagnosis with no response to meds. I'm sorry for going on and on. I think at this moment, I have lost myself. My heart breaks for everyone here, and it is completely broken over Rich because he gets no relief and the prognosis grows worse. I can't be strong for him, it seems. He worked so hard his whole life and now he can't bring himself to do more than make it to the kitchen counter to take pills that don't help.
For over 10 years he was on every antibiotic known to help with constant prostate infections, including IV treatment. In 2003 a bad heart attack, and now this. I swear I believe these antibiotics have something to do with his Parkinson's. Well, that's what the dr. calls it for now. I'm sorry, I am writing without being able to control my own emotional state this morning.
Thanks for listening, Maureen

an audio disscussion from a family who has endured PD
 

http://www.npr.org/templates/story/s...toryId=5788850

http://www.transom.org/shows/2006/20...ody_in_motion/

audio -
http://tinyurl.com/ytjafn

I hear hopelessness in both Bob and his wife- the boy is angry and sad: Please - never lose hope, pray for miracles - live and dream
and continue to laugh... or you will be dead long before you actually are.
:grouphug:

Maureen;
 

my heart breaks for you both.
Normally non-responsiveness to drugs precludes a DBS. I have heard some second-hand info about other non-responsive Parkies getting benefit from it. All you can do is try.
I would suggest getting an evaluation at Mount Sinai in NYC.

Good Luck and God bless!

Charlie

Fyi
 

Do you see a movement disorder specialist??
Controlled Release does NOT work for most of us. We need that "blast" of Dopamine to get moving! Has he tried regular sinemet??
It is undoubtedly worth a try if he has not. There are all kinds of drugs he can try!! Don't give up!!
Get him up off the couch and get him moviing too!!

Charlie

Yes, he is seeing a Movement Disorder Specialist. He is supposed to be a good one too. The neurologist I brought him to over the summer is also supposed to be excellent and was with Johns Hopkins. He is the doctor who changed Rich to regular Sinimet & increased it to see if it would improve his condition. He is the one who also ordered the sleep study and B-12 work-up. However, now it seems I can only get an appt. at his practice with nurse practitioners. I told them that I understand that, in the future, he would be seen by a NP; however, because Rich has not improved, I would still prefer he continue with the doctor. They have not been very accommodating and that's why I made the appt. with our original Movement Disorder Specialist. He first treated Rich in March '06. Rich kind of lost it in 2005 and became paranoid and so mentally changed that his company sent him for a medical evaluation. That was the beginning of him not being able to work any more. At that time, he was seen by a neurologist who put him on mirapex. In 2006 at our first visit with the movement disorder specialist currently treating him, he removed the mirapex because he felt it was contributing to Rich's paranoia. Yesterday this same doctor changed the regular sinimet back to the timed release that he had put him on last year. I know this is confusing and hard to follow along. I'm having trouble myself. So far I have brought him to 4 different doctors and I am not happy with any of them and he is sick of doctors altogether. I can't say I blame him.
Thank you so much for your help, bless you Charlie

Maureen
 

I won't give medical advice etc etc BUT if it were me I would really wonder if it was PD at all. The total lack of response to the drugs is very odd.

The original problem of chronic prostate infections for ten years is also very odd. Was there ever an explanation for that? And did it just go away? Also, the extreme weakness at two years in seems a bit odd as well.

There is a whole class of weird diseases/syndromes at the interface of neurology and endocrinology and immunology. PD is one but the real challenges are things like chronic fatigue and chemical sensitivities and metabolic disorders. These really need a team approach from a high class hospital. I think I would call around looking for such. Where are you located?

-Rick