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Members reflected on how much their Parkinson's disease has progressed since diagnosis, with timelines ranging from a few months to over 20... Read more
Original sin, Pandora's box who knows why pd exist, but it is looking us in the face every day. Some days are better, some it takes me 15 minutes just to stand up straight, I still go out the door to exercise pain, fatigue and lack of focus and all. The meat is most of us are in pain and suffering, our caregivers are sad and frightened about what is coming next. What this site does is pass out info support comfort and the fact that we are not alone in our circumstances. Not sugar and spice but support and understanding with some love thrown in. It helps us to hear and be heard. I have heard the pain and suffering of too many on this site but also the most moving stories of love, commitment and courage. Nuf said. Aloha
The responses fascinate me. Mine is progressing fast. Mine is going slow. This med is wonderful. For me this med was useless. I walk 3 miles a day. I'm in a wheelchair. I'm alone. I have a wonderful caretaker. I go to groups and the gym. I don't get out anymore. I'm coping pretty well. I'm discouraged. One thing we all agree on is PD is ugly. We all live in different houses together but we have that one word. " TOGETHER". God bless us all.
@A MyParkinsonsTeam Member. I started taking sinemet when I was first diagnosed almost 10 years ago. I've been through Stalevo and am now on Rytary which is a "time-released" form of Carbidopa/Levodopa. As the disease has progressed, I've found that the "extended" release forms of Levodopa help to avoid big swings between On/off periods. I also use the Neupro patch which provides 24 hrs of a dopamine agonist and Azilect which I take once a day. These are the 3 fairly standard meds that most Parkinson's patients will eventually end up on. Rytary has only been available for about a year and a half, so it's still pretty expensive. I have a couple of other things I take to help with peripheral neuropathy and nightmares, but those kind of add ons are unique to the way the disease has progress in my body uniquely. There's still concern about the side-effects of levodopa over a long period of time, but I think that too can be managed by you working in conjunction with your docs to be aware of even minor changes in your body and discussing them with your docs.
Most people --if they see me at work or working out at the gym in the early morning every day -- would have no idea that I have PD (unless I tell them).. This is 7 years after symptom onset. But. this is seeing my "brain on drugs". Because i am so well medicated during the day, it would take an eagle eye to notice. But my "brain off drugs" terrifies me. I have had a couple of situations in which i couldn't take my meds on schedule or had other health issues that made med absorption poor. Then, I am all but frozen, cannot walk, have trouble with virtually all voluntary movements, and thinking & talking slows dramatically. With low med dosing in the evening and at night, i may lurch forward, holding onto furniture to not fall. Needless to say, I don't go out at night socially or otherwise.
@A MyParkinsonsTeam Member, I was diagnosed almost 5 years ago but the last 6-8 months, i noticed a rapid progression of my symptoms, mostly balance & walking problems,also most of the PD symptoms, yet I never had an issue with tremors. Like Cherie,my neurologist movement specialist classified me as stage 3 sometimes stage 4.. I am not giving up. I will continue to fight this damm PD.
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