YogaLife,
I was diagnosed eight years ago at age 51 with a tremor in one finger and no arm swing when I walked. Nine years ago I had a frozen shoulder. Twenty years ago I stopped swinging my right arm when I walked. Thirty years ago I started losing my sense of smell. And as Paula mentioned: constipation. I had constipation PLUS insomnia and depression at least thirty years ago (or more) as well.
Over the past eight years my tremor is much worse - I have bad leg tremors & restless leg pretty much all of the time. I have insomnia, bladder urgency, stiffness, drag a foot, akathesia, slowness, and pain. If i am under medicated, i have burning at the nerve endings (neuropathic pain). There are more but those are the main symptoms.
A future word of warning about the agonists (Mirapex & Requip), some people end up with obsessive compulsive behavior. At its worst it can manifest in out of control gambling, sexual addiction, shopping addiction. I had it but it was working on the computer 20 hours a day. It is a small percentage but just be aware of changes in behavior.
I’ve been on levadopa for 6 years now.
But let me ask you – how long has your husband been on Azilect? There are two opportunities he may still have, depending on the study. (sometimes studies that are looking for de novo patients will accept patients who have been on meds a short while and are willing to stop the meds.)
1. The
MJFox Foundation PPMI study is looking for de novo patients in an effort to identify biomarkers. Participating in this could help all people with pd.
2. There is a
clinical trial for a substance called Cogane which is looking for de novo patients. This new treatment is taken orally and crosses the blood brain barrier and in earlier trial is very promising to help pwp.
When I was de novo, I joined a clinical trial for a promising new treatment. I was in the trial for two years, and it ultimately failed. But 500 of us from that trial are still followed and participate in additional studies to add scientific knowledge about PD. Honestly, I'd join PPMI or the Cogane trial if I were eligible.
And my last bit of advice is to agree with Soccertese - Exercise!!
Good luck!
Jean,
http://www.pdplan4life.com