Joan....

A BIG hug to you for so succinctly touching on some very important salient
points which ALL should know about what life is like for many PWP.

Don't be a stranger 'round these parts, m'dear... it's nice hearing
(figuratively) your thoughts.

Barb Mallut
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From:   Parkinson's Information Exchange on behalf of Joan Ruuska
Sent:   Tuesday, January 13, 1998 6:43 AM
To:     Multiple recipients of list PARKINSN
Subject:        Topics for Ivan

Hi all,

I have been a lurker for several years, although I've responded on occasion to
individual posts.  I'm on the list to learn what I can about the latest
developments in PD so I can pass them on to my brother (54/6+) who has PD and
no computer.  He lives in upstate NY and I live in Maryland, so I only see him
two or three times a year and thus, am made painfully aware of the changes in
him and his response to his medication.

This is just a lead in to mention to Ivan that a viewing audience needs to
know that:
      1.  Medication has to be continually adjusted to reduce the "down" time
and increase the "up" time.  I suspect the general public assumes that once
you're on medication, you're all set.

      2.  Diet is critically important to the potency of the medication.  My
brother is a minister and has to be especially careful on Sunday morning that
his meds are working when it is time to be in the pulpit.  This is a constant
source of worry for him and it is made more acute if he has an evening service
as well as a morning one.

      3.  I don't think the public at large is aware of how PD affects normal
bodily functions - constipation comes to mind.  It is a recurring theme on
this list and has been dealt with in creative ways.  Some of the "cocktails"
come to mind.  These recipes I have always passed on to my brother for which
he is thankful.

      4.  "Down" time can be painful.  Muscles that tighten up hurt.  My
brother spends what seems like hours to me of reaching up to the top of the
door jambs, holding on, and stretching his muscles.  He says it is the best he
can do to relieve the aching until his medicine kicks in.


      5.  PD has many visible signs, but *most* people think only of tremors.
The *freezing*, the inability to take steps, the fear of falling, etcetera,
all need to be brought to the public's attention.


      6.  The mild depression that is experienced by PDers needs to be
mentioned.  This can be severe in some cases.

      7.  The various deleterious side affects of some PD medications is
probably unknown to the public, but because of it, medication which works for
one may not be appropriate for another.

Ivan, this is just some of my thinking on what I think needs to be highlighted
in your TV appearance.  (Ivan, I'm sorry neither you nor my brother made it to
BU Medical Center in very early January.)


As always, my very warmest hugs to everyone on the list.

Joan




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