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PARKINSN Archives
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PARKINSN@LISTSERV.UTORONTO.CA
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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!
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