Re: janet's comments re: "going public"-Although an
incredibly difficult proposition while you're trying
to
salvage a career-you know it is illegal to
discriminate against the "handicapped"-you know it
happens all the time-I have found that telling people
you have PD up front has lifted a terrible burden. I
wasn't fooling anyone. It had become increasing
obvious SOMETHING was wrong and I found most people
were empathetic. The other issue is suspicions that
you're drunk or high when they notice your lack of
coordination, tremors, etc.-which can also be death to
a career.  Carole H.

--- janet paterson <[log in to unmask]> wrote:
> hi all
>
> At 19:35 1999/09/19 -0700, susan trout wrote to me:
> >Hi Janet, To your question what types of research I
> am interested in,
> >I am interested in biomedical research and in human
> drug trials.
> >I thought I'd share a little about myself. I am a
> board member of
> >PAR (Patients for Animal Research, through WABR,
> Washington Association
> >for Biomedical Research)  which I became involved
> with through involvenent
> >with iiFAR (Incurrably Ill For Animal Research). I
> got to iiFAR through
> >dogs. I'm a breeder-exhibitor of Boston Terriers.
> One day while staffing
> >a table at a large animal exhibit at a mall I met
> Patty Woods (iiFAR &
> >PAR) who introduced me to the world of benefits we
> have from biomedical
> >research, both for us and for our animals.
> >
> > I am a political activist, an elected PCO, and I
> have spent many years
> >talking to our state legislators and giving
> testimony before committees,
> >but not in the last 3 because of poor voice control
> and the whole body
> >shaking to the point my friends started kidding
> about me and performing
> >their renditions. LOL they have been so funny!
> >
> >Does anyone have any suggestions to contain the
> trembling that increases
> >when under stress? I become so nervous now days
> that I shake literally
> >from head to toes. Hands and legs are the worst.
> What about voice control?
> >Pitch, volume, shakiness in the voice, tripping
> over tongue or tongue not
> >moving with my thoughts...
> >
> >Legislative committee meeting rooms tend to be
> elongated slots with 3
> >raceways to get up to the tables & microphones to
> speak. Please tell me
> >how others deal with having to move about in close
> confines without
> >tripping, stumbling, and generally making a very
> poor first impression;
> >all this I can manage to do before opening my
> mouth. Opening my mouth
> >these days seems to remove all doubts in the
> legislators minds that
> >I am on something, or generally incompetent.
> >
> >Wish me luck, I'm going Tuesday to protest the work
> of a commission the
> >governor appointed. They are taking  public
> comments at the commission
> >meeting, and I'll be darned if I'm not going to be
> heard. I'll need to
> >be standing, with notes in hand, and speaking into
> a microphone. Any
> >suggestions anyone has to improve the presentation
> would be appreciated.
> >
> > Susan Trout <[log in to unmask]>
>
>
> hi susan
>
> i'm sorry to be so late in getting back to you!
> i hope your presentation went okay yesterday!
>
> my personal approach, were i to have to do the same
> thing,
> especially if i knew that my symptoms were going to
> be obvious,
> would be to preface my remarks with a disclosure
> about my pd
>
> the 'psychosocial' article mentioned in the
> pienet/words section
> of my website describes the pros and cons of 'going
> public'
>
> i'm going to take a leap and post your message to
> the list
> where you'll find lots of support and advice
> [even though it may be belated!!  :-(  ]
>
> yikes, we have a political activist
> and an accomplished legislative speaker in our
> midst!!!
>
> also, susan, in re research, the links pages on my
> website
> have references to current trials and pubmed and
> other 'links to links'
>
>
> janet
>
> janet paterson
> 52 now / 41 dx / 37 onset
> 613 256 8340 po box 171 almonte ontario canada K0A
> 1A0
> a new voice:
> <http://www.geocities.com/SoHo/Village/6263/>
> <[log in to unmask]>
>


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