Hi,
I admire you so much for your goals with the PD wing at the
Presbyterian home. I have some ideas but I haven't had PD as long as you so
maybe my ideas are just everyday details that you have already built in,
such as bed that head can be elevated, easy to open door knobs, easy to use
faucets, chairs for toilet, and showers.
I would like to introduce myself. My name is Paula. I am 47. I had
been diagnosed 5/27/92 and I had deep brain stimulation on both sides on
10/30/2000.
I buried my mother on Sat. & had brain surgery on Monday......6 a.m. to the
hospital for surgery until 9 p.m.. The surgery was not painful at all, but I
developed swelling of the feet and legs, so we didn't know for about 4
months of using electric leg pumps 3 times a day how successful the
operation really was. In hindsight I would do it again, although I hope it
doesn't come to that. DBS took care of dystonia in my right foot, but my
meds are still very necessary. The biggest problem is sometimes they get
turned off and I have to think, "Did I lean too close to the magnet around
the refrigerator door"? I have a blue magnet that I can put against my
stimulator for three seconds and it will turn back on. I am very anxious to
get a remote that Meditronics is devising, but they're not coming out til
Jan 2002. Happy to answer any ?????s.
Paula
----- Original Message -----
From: <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, December 18, 2001 6:42 PM
Subject: Parkinson residence
> Dear PIEN readers,
> Let me introduce myself. I am Marge Moylan. I have Parkinson's which was
> diagnosed in 1986. I am 57 now, and have symptoms that go back to my late
> 30s. I am a member of the Central New York Parkinson's Support Group,
Inc.
> which will be celebrating its 10th anniversary next month. Six of our
> members including me are serving on a steering committee at the
Presbyterian
> Home of Central New York which is in the process of planning a wing which
> will be a residence for PWP.
>
> I know some of your are aware that the Presbyterian Home has opened this
> Parkinson wing. It seems to be a first. We can't find another like It.
> Currently the wing has about 6 residents with PD. It is a gradual
changeover
> from an ordinary wing to the Parkinson's wing. At this point staff on
that
> wing have had special training in caring for the Parkinson patient to be
more
> sensitive to our needs. But down the road there will be a complete
renovation
> of this wing to make it as Parkinson friendly as possible. What we are
> looking for right now are ideas, suggestions of specific things that
should
> be included in the design of the rooms, hallways, and common areas that
would
> make these suitable, accessible and useful for PWP. We need suggestions
to
> pass on to our architect.
>
> We have talked about things like a place where we can sit up late to talk,
> read, watch TV because we have so much trouble sleeping, and things like
> lines at intervals that are part of the carpeting, to step over to break a
> freeze, and handrails on outdoor walkways. We've suggested an exercise
room
> right on the unit in addition to the large rehab center, so that a PWP can
go
> in on his "on" time to get some exercise when it's useful to him. These
are
> the kinds of things we are looking for.
>
> If you have any ideas that you would think would make life in a residence
> such as this better for PWP, please let us know. You can e-mail
suggestions
> to me at [log in to unmask]
>
> We are about to enter the fundraising aspect of this project and need some
con
> crete ideas about what we can do to be the biggest help to PWP.
>
> Thanks so much. Hope to hear from some of you.
>
> Marge Moylan
>
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