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Yes, even we with Parkinson's have our arcane skills!


On 11 March 2014 10:15, A Phillips <[log in to unmask]> wrote:

> Autumn 2004. My neurologist says I'm atypical (and wrote in my notes that
> I'm an awkward personality - true - he didn't
> know I can read upside-down !)
>
> > Date: Mon, 10 Mar 2014 18:02:10 -0700
> > From: [log in to unmask]
> > Subject: Re: Blog
> > To: [log in to unmask]
> >
> > Amanda, when were you first diagnosed?  I'm sure I can speak for others
> when
> > I say we're happy to be of help and that your British wit is essential to
> > the existence of this List.  I think your sense of humor has helped many
> PWP
> > too.
> >
> > -----Original Message-----
> > From: A Phillips
> > Sent: Monday, March 10, 2014 2:28 AM
> > To: [log in to unmask]
> > Subject: Re: Blog
> >
> > Unable to communicate ?
> > From  the woman who (along with the others in the list) saved my sanity
> > (possibly stopped me suiciding) when first diagnosed.
> > Amanda
> > > Date: Sun, 9 Mar 2014 19:41:13 -0700
> > > From: [log in to unmask]
> > > Subject: Re: Blog
> > > To: [log in to unmask]
> > >
> > > Sharon
> > >
> > > Your family will never understand because it is impossible to describe
> it.
> > >
> > > my first 5 years were great and even after  DBS in 2003  I could do
> > > things.
> > > Now going on year 18 I'm in real trouble.  I never knew talking,
> writing,
> > > doing anything  could be so painful.  Communication is so hard, it
> affects
> > > my whole body.   I mean everybody can talk, right?  I once said that PD
> > > is like rigor  mortis without benefit of death, and I stand by that.
> > >
> > > But I look good, people say, so what could be wrong?  At 78 I'm in good
> > > shape for the shape I'm in.
> > >
> > > -----Original Message-----
> > > From: Sharon
> > > Sent: Saturday, March 08, 2014 11:00 AM
> > > To: [log in to unmask]
> > > Subject: Re: Blog
> > >
> > > I'm glad to join in. Have had PD for a while although I'm still
> reasonably
> > > we'll. however, I need somewhere to air my feeling as my family doesn't
> > > seem
> > > to understand how I look at my possible future. I deserve this because
> my
> > > Father lived with PD for 20+ years and I never really understood what
> he
> > > was
> > > experiencing. I thought it was just aging and resented him because he
> > > never
> > > tried to do anything to help himself. Didn't know about abulia (the
> lack
> > > of
> > > motivation that was part of his longstanding depression). As you surely
> > > know
> > > its impossible to foresee the future and some of us will stay
> relavitively
> > > well, others will go on a never ending downhill journey that is not
> > > pretty.
> > > I think they want me to stay positive but I am being realistic in my
> > > fears,
> > > I believe. Thet don't seem to want to understand when I am experiencing
> > > something that I know is part of the disease and they think I am
> > > overreacting. They scoff at my double vision, crazy dreams, soft hoarse
> > > voice, shaky  illegible handwriting, etc.
> > >
> > > Sent from my iPad
> > >
> > > > On Mar 7, 2014, at 6:44 PM, A Phillips <[log in to unmask]
> >
> > > > wrote:
> > > >
> > > > I've started a blog; if anyone is interested it's at
> > > > http://phillips-writes.blogspot.co.uk/
> > > > Not much on it yet but am working on it.
> > > > The blog will probably just be about whatever I happen to feel like
> > > > writing about.
> > > >
> > > > Amanda Phillips
> > > >
> > > >
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