----------
> Fra: Ida Kamphuis <[log in to unmask]>
> Til: Multiple recipients of list PARKINSN <[log in to unmask]>
> Emne: Antw: Jo's Post
> Dato: 22. september 1997 07:06
>
> Dennis and Jo and all listmembers
>
>
> You say it very beautifull,Jo. I tried to say about the same in my
yesterday
> posting. It is impressive that even for loving and intelligent people
like you,
> it is so difficult to fight your intuition, which is saying the wrong
thing.
> This one of the most "painfull" symptoms of Parkinson. I would like to
hear
> from you, Dennis (and Jo)and others, just how you manage to live with
this.
> But now, my pallidotomy comes first.
>
> Thaks to all who wished me strength  and good luck.
>
> Ida Kamphuis
> [log in to unmask]
***
Dear Ida.
I wish you good luck, and I`m looking forward to read your e-mail again.
Sonia
Denmark


NEVER GIVE UP
>
> > My wife Joanna (Jo to everybody) wrote this. I am sharing
> > it with the list with her permission.
> >
> > Jo's posting.
> > -------------------
> >
> > Communication : A Talking Point : A Carer's View.
> >
> > In the 70's and 80's the words 'Body Language' became everyday
> > jargon.  There were books on it, shows on it and some made their
> > careers in explaining it and how to read it.  I found it interesting
and
> > funny and would enjoy amusing moments when reading peoples
> > body language, and it was quite helpful at times interpreting peoples
> > emotions  or state of mind, not to mention those of my husband and
> > children.
> >
> > That changed, when in 1987 he became diagnosed with Parkinson's
> > disease, and his body language slowly faded in front of my eyes.  That
> > animated face, easy smile and wave; being relaxed or tired; content or
> > anxious; looks that I knew so well, things that I could read easily
about
> > him with a quick glance or even longer gaze had gone.
> >
> > There was many a time I would think that he didn't like something
because
> > the 'emotion' wasn't there to see.  In fact the emotion was there but
he
> > just
> > couldn't show it.  The 'parkie mask' was very evident. Deep down I knew
it
> > was the disease, all the signs and symptoms were there, I'd read all
about
> > them.  I'd get angry with myself after getting him to say how much he
liked
> > something and feel guilty when he say again, "I'm not bored , just
'parked'.
> >
> > His emotions are on the 'inside' - locked in by the Parkinson's, unable
to
> > be
> > seen because of the rigidity, slowness and masked expression, this - in
a
> > man who is full of sensitivity and tenderness  with such feeling for
the
> > world
> > and the written word .
> >
> > It's frustrating sometimes for me not to get immediate feedback.  They
say
> > patience is a virtue, but for parkie's partners it's a necessity  to
keep
> > the
> > very important channel of communication open.  I'm still working on it.
The
> > Parkinson's won't go away and  the 'channel' gets slowly more blocked.
So
> > we have to find other ways to get messages from our partner.  Talking
is of
> > the essence.  We must not be afraid  to say what we feel to our
partners
> > for
> > fear  of hurting their feelings a little bit  - they have a right to
know.
> > 'A stitch
> > in time saves nine' so to speak.  It is all part of the whole -
> > communication.
> >
> > It wasn't long ago that for a week I didn't say that I felt 'left out',
> > that we
> > weren't really talking to each other.  I thought he'd shut down from me
and
> > I
> > thought something was really worrying him.  Eventually, somewhat
tearfully,
> > I
> > told him.  He was shocked and saddened having had no idea that he was
> > putting out these signals.  "Please tell me when you feel like that -
I'd
> > never
> > shut you out", he said.
> >
> >         I said," I should have known".
> >
> >         Another lesson learnt.
> >
> > Jo Greene.
> >
> > ++++++++++++++++++++
> > Jo, CG for Dennis Greene 47/10
> > [log in to unmask]
> > http://members.networx.net.au/~dennisg/
> > ++++++++++++++++++++
> >