 |
 |
I'm also considering starting a clinical trial. It is for a drug known as TCH346 - too new for a name apparently. It is a component of Selegeline and is hoped to slow down the progression of the disease. I was diagnosed in Jan. but have been undeniably (to me)symptomatic for about a year. At this point symptoms are limited to my left side and if I could stop it there I'd count it as a miracle. I feel that I really have nothing to lose and potentially something to gain by starting this study. My father also had young-onset PD and was involved in several trials. I know that one reason he did was to help future geberations. His mother also had young-onset and even though we were all told it was coincidence (same environ.), I'm sure he couldn't help but look at his 4 children with worry. And now I'm facing the same ordeal, all but confirming in my mind a genetic factor in my family. I'm the oldest so look at my 3 brothers and my young son. The research could not go forward without our participation. One thing that has been emphasised strongly to me is that if I don't respond to the drug or get the placebo, but need to start treatment, I can opt out and do so. same goes for bad side effects. A couple of potential "perks" - closer tracking (i.e. more appts. with neuro and team) during the course of the study and earlier access to a potentially beneficial drug. I'd like to hear what others have to say, Jennifer >But what about participating in the study??? In some ways I'm concerned >about starting any meds before I really need to. Also, I'm terribly >sensitive to about 1/2 the meds that are out there. And I'd be signing up >to >get either something as yet untested on humans, or Requip (what experience >does any of you have?)--or of course a placebo. > >I sure would appreciate the thoughts that any of you might be willing to >share with me. > >Thanks! > >Sally > >Sally Lattuca >Turn of Phrase >carefully crafted communications >When the words sing. . .the ideas dance! _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn