Hey there, Bernard! Nice to "see" ya back on the List... you've been missed
'round these parts m'friend.
I'd like to add one comment to your so-succinctly-and-accurately-put statement
about the person with PD adapting and balancing to life with the disease and
it's assorted nuances, i.e., drugs, physical degeneration and changes, etc.
I'd forgotten (or maybe "ignored" would be a better word?), what with my
preoccupation with Parkinson's, that I'm ALSO dealing with plain ol "LIFE
changes," not having to do with PD at all.
These life changes come with their own set of physical changes and nuances...
that we often tend to ignore or just grumble about. There's even a NAME for
these life changes - AGING <grumbling and groaning>
It seems to ME that most PWP are either approaching middle age or ARE middle
aged, or are even older than that. So it figures that not only do we cope and
adjust (hopefully!) to the slow degeneration and changes inflicted upon us by
the disease but we're also coping with physical changes going on
simultaneously to those changes caused by our PD because we're aging.
Frankly, sometimes it's tough to know what's causing which symptom! <'nother
groan> I think it's important each of us remember that not ALL the changes
going on within our respective bodies are being caused by PD, and it's equally
as important to make our family and physicians to see the COMPLETE picture we
present them, rather than conveniently blaming ALL our physical problems and
changes on the most OBVIOUS - the disease.
Say... where'd all these gray roots come from in my hair, huh? Caused by PD?
Nope... THIS "symptom" arrived one day after I turned 40 - along with the
bifocals! <grin>
Barb Mallut
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From: Parkinson's Information Exchange on behalf of Bernard Joly
Sent: Thursday, January 08, 1998 7:44 AM
To: Multiple recipients of list PARKINSN
Subject: Improving the effect of medical treatment
When you are diagnosed with PD, you generally start a heavy medical
treatment, and you are going to live with it for some 15-20 years. You have
to adapt to side effects, to cope with symptoms you don't know quite well
whether they are caused by the disease or by the treatment. You go through
periods of doubt about the intakes : too few, too many ? You get confused,
and it is not comfortable.
The best neurologist would be unable to help you, because no PD is like
another one, nor even the same as yesterday or ten days ago ; because you
cannot summarize within ten minutes what happened to you on every day of
the past three months ; and of course, because there is no way to measure
accurately how well, or how bad the treatment works.
We all react differently to that strange situation. My personal move was to
try and understand, anticipate, even control the response of my body to all
these tablets. Helped by an old, but solid scientific background, I
gathered whatever I could find about the effect of our medical treatment,
and I ended up with a tool (actually, a very simple Excel spreadsheet) that
I call MEG07. Those of you who might be interested will find a description
and a user's manual (in both French and English) on my personal site at
http://perso.wanadoo.fr/bernard.joly
All this is free of charge, and you carry full responsibility on whatever
may happen if you take my ideas seriously.
Any comments welcome
Bernard Joly
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http://perso.wanadoo.fr/bernard.joly
http://perso.wanadoo.fr/parkinson.francophone
