Connie...

I know this is going to sound strange, but after 21-almost-22 years of having
PD, and having had a unilateral pallidotomy three years ago Oct. 24, plus have
collagen injections into my vocal cords (have had that done 2 times, 5 months
apart)I almost don't KNOW what all my symptoms are any more.

It's so weird - things come and go.  While I have no external symptoms on
the right side (the side that the pallidotomy was for), the disease moved over
to my left (primary) side about a year ago and from about 3 or 4 p.m. nearly
every day find my left leg is dragging off and on till an hour or more after
my next dose of Sinemet/Mirapex (I'm stuck at taking only 1/2   0.25. mg
tablet it seems, 'cause I throw up if I take a whole tablet).  I also may get
left hand and arm movement problems - tho not every day.  Profound drowsiness
hits in the late afternoon-early evening nearly every day.

There's more internal symptom but I don't wanna sit here counting 'em.  It's
enough I know they're there.

It's nearly impossible to read anything for the first 2 hours of the day -
till my initial meds of the day kick in (it's an eye muscle thing due to the
PD)  I have intermittent depth perception problems each day.  Loss of balance,
too...

The thing that gets me in the MOST trouble lately - with physicians, Social
Security, etc, is that I simply don't LOOK like I have PD when I'm being
examined or interviewed.  I've rested well the day before the appointment, and
have carefully timed my meds to get maximum benefit from them which gives me
about 3 to 4 decent hours a day... sometimes less, depending, and the rare
very-good-day - depending (if the moon is in the right quarter or something)
<damn unpredictable disease!>.   Each time I get checked by an MD lately, I
get that "You don't LOOK at all Parkinsonian," and they note in my records
that I'm doing very well.... which is true for having had the disease as long
as I've had it... but they ALSO think LOOKING well  is the SAME as FEELING
well!   It's NOT!!!   They never ASK me how I feel or what symptoms I may be
having, presuming I gather, that if THEY don't SEE symptoms, well then, by
golly, I dont' have any!

The Mirapex - even tho it's not full strength - IS making me feel even better
in the decent times, and not quite as poorly in the bad times.  It's also
making me very nauseous, but I ain't gonna stop taking it!

Social Security is REALLY coming down hard on me now.  They're saying (in  a
letter I got today) that I didn't work long enough in the last 10 years to
qualify for SSDI - and I had worked from 1982 thru 1990, plus from '95 thru 97
(22 months).   They neglected to check back into my records, it seems.

So far, they've stalled on my original Appeal by losing it and finding it FOUR
times, with it currently being lost - or as THEY say - "You never sent it to
us."
They have also denied my NEW application for SSDI, as of today (this was the
one where they said I hadn't worked long enough, needing to have worked 5 out
of the last 10 years).  I may NOW, so say they, file yet ANOTHER appeal - this
time for this newest denial, and DAMMIT - I WILL, but I'm heartedly SICK of
filling out those steeeeeeeenkin' Social Security questionnaires repeatedly
with the same info about myself!!!

In MY mind, the Social Security Dept.ranks right up there with the IRS!

Barb Mallut
[log in to unmask]

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From:   Parkinson's Information Exchange on behalf of LISTConnie johnson
Sent:   Wednesday, October 22, 1997 1:51 PM
To:     Multiple recipients of list PARKINSN
Subject:        Re: To  barb Mallut

i  sympathize with your problem  with social security disability.   was
wondering
what your symptoms are?  Because i also have no tremors  but ihave some
balance problems and u sually feel like a space queen a large portion of the
day also i am almost  entirely unable to speak most of the time.   was just
curiousas to what yr. symptoms are.
sincerely,

connie johnson  56/4
 venice, florida