Hi MDawn....

I've had PD for 22 years, had a unilateral pallidotomy, take a moderate amount
of Sinemet each day, and having worked at one thing or another my entire adult
life, stopped working last July.

After owning/operating my own multi-phone line computer bulletin board system
for four year - a system that had one "for pay" full service
social/entertainment BBS and 6 free-to-the-users chronic disease BBSes
on it (one of which was a PD BBS), I  moved on to manage the Chronic Disease &
Disorders Forum on The Microsoft Network for another 2 years

I think I must have slept off and on for 12 hours a day following MSN's
and my parting of the ways.  I was never so tired in all my life after
stopping work!  I DID function, but it was with a great amount of effort
and that entire time seems to be shrouded in a vague mist at the back
of my memory.

Eventually I just got bored to pieces with my own company and started
arranging a monthly social dinner for members of my local PD support
group and any List member who might be passing thru L.A. on one of our
"Parkies-on-the-Town" dinner-nites..  That has been fun and lively as well
as very gratifying.

Recently I was invited to host a PD support group for a nearby hospital
which has started a movement disorder clinic/neurosurgery under Dr.
Robert Iacono.  Our first meeting's on March 21, and I'm soooooo
excited and eager for that day to arrive!!  We're going to be starting
a PD telephone hot line shortly after the support group gets rolling, and
the hospital seems open to new ideas and suggestions.  YOUSA!!!!
<giggle>

I guess what I'm saying is that there IS life after Parkinson's... BUT...
it's a life with many more changes and adjustments for us to make
than we'd ever expected to have to make as we matured.  Not a one
of us planned on coming down with Parkinson's.... it wasn't in our
"birthright contract!"  Amazingly, most of us bend, flex, give-a-little-here-
and-there, accommodate, and even manage to GROW while we battle the disease.
Heck... we haven't even let PD stop us from enjoying a good
laugh or havin' fun!

I made my decisions to retire after the fact, and realize.... as you
suggested in your post, that it would have been better for me....
physically and emotionally... to have thought of retirement BEFORE
I was forced to stop working.  Actually, it was more of a "realization,"
than a "decision," now that I think about it...

During that post-employment 6 month fog of exhaustion it dawned on
me that IF I continued to work full-time in a field that demanded a 7
day work week, I'd end up with my condition degenerating much more
rapidly then it would if I was able to stop pushing myself.

Like I said, there is life after Parkinson's and there's ALSO "life after
retirement!  But it's better to be prepared for the latter... ESPECIALLY if
it's caused by the former.

Barb Mallut
[log in to unmask]







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From:   Parkinson's Information Exchange on behalf of DawnNow
Sent:   Sunday, March 08, 1998 7:04 PM
To:     Multiple recipients of list PARKINSN
Subject:        coping with retirement

Just a few thoughts on coping with the need for retirement, & with other
situations, as well.

The comments made about one's career, if it has been a rewarding one, often
being a large aspect of a person's identity are certainly true, & I, too,
encourage those who must make this decision to find a way to continue using
his/her work experience in perhaps a redefined way.

I understand the position the husband of the caregiver who wrote is in.  I,
too, when my symptoms became troublesome, was a successful manager.  I had
been promoted to the position of Director of Social Work Services at a large
hospital, & was receiving many "attagirls" from the powers that be, from those
who I supervised, etc., & was on the verge of being promoted over additional
departments when I had to become honest with myself about my declining stamina
& increasing PD symptoms.

Came the time for redefining.  I had always loved working therapeutically with
individuals & groups, so accepted an invitation to join a psychiatrist &
psychologist to do just that.  For a couple of years I was able to function
well in that role, but again came the time when it was impossible to continue
& I had to let go.  On the one hand it was very difficult; but on the other
hand it was such a relief to not push myself to meet obligations which,
although I loved, were beyond my endurance.  I didn't realize what incredible
demands I was making upon my body until I stopped making them.  It took my
body about 6 months to recover from the exhaustion that those demands had
caused.

Over time I've come to treasure every hour I can function, & consider very
carefully any activity which might rob me of one of those hours.  Holding that
up against the 6 months lost to exhaustion -- what a waste of precious days!
When days are gone, they are gone.  Because of this, I would encourage anyone
who is experiencing anything similar to resolve it before it robs you of any
piece of life available to you!

Redefining & refining is an ongoing process.  At first I had found myself
asking:
How can I continue to work, but in a role that fits my current health status,
        interests, etc.  Then.......
What kind of life can I create that enriches my sense of being in the world
during  the hours when I can function?

I still ask, & answer, that last question frequently.  The answers for me are
probably different than they'd be for someone else, but I think the questions
are usually the same:
-- What was it IN my work & other parts of my life that made it rewarding?
How     can I get these things in new ways?
-- What things have I left undeveloped in myself or my life because I didn't
have    time for them, or wasn't aware of them?  How can I develop those now?
(This   has brought enjoyment to my days that I probably wouldn't have had the
        opportunity to experience if I had gone on working -- one of the
"gifts" of
PD)
-- How can I be of service to others now?

My heartfelt wishes for good days ahead to those who are struggling with the
many issues of chronic debilitating illness.  It takes some effort, & it takes
some time, but you CAN make them more wonderful than you could imagine!

MDawn   55/6