Ivan....

I gotta tell ya, m'friend, I HATE PD today, also!!!!!!  I've spent the
afternoon and evening so filled with anger and rage that I think I'm gonna
burst.

I had been declared "disabled" by Social Security several years ago after a 3
year battle with 'em trying to prove that I had PD and was indeed disabled.  I
lost that disabled status when I went to work on MSN where I was employed for
22 months. In theory I should have been able to work for 36 months, per the
booklet sent me by Social Security before losing my disabled status.

I received a letter from SSDI today saying after checking my medical records,
and based upon my being seen by an MD that SSDI sent me to - a
psychiatrist/neurologist who was NOT a movement disorder specialist - while I
DO have PD, I'm no longer disabled and can go back to the go back to the work
I'd previously done (thank you - but I don't want  to work 7 days a week 12
hours a day because I not only  feel rotten doing that but have noooooo life
whatsoever then!)

THEN SSDI sent a message to my private long term disability carrier telling
them I was no longer disabled, and now THEY are asking my why I'm not working
and to account for myself by completing the 16 page form questionnaire they
sent me.

I'm SOOOO damn PISSED off, and am SOOOO damned tired of filling out all the
damn form letters, and SOOOO damn sick of having to JUSTIFY not having a
tremor that's VISIBLE to physicians who swear that to have PD you MUST have a
visible tremor.

I'm ANGRY!    I'm VERY ANGRY!!!   And I AM TOOO DISABLED!!!  I just don't have
a damn tremor!  And I LOOK well.

Thanks..... I needed to get this all out in a place where what I've said IS
understood, by people who KNOW that what I'm saying about PD IS true.

<Trying to have a good cry and not succeeding>

Barb Mallut
[log in to unmask]


----------
From:   Parkinson's Information Exchange on behalf of Ivan M Suzman
Sent:   Thursday, October 16, 1997 6:28 PM
To:     Multiple recipients of list PARKINSN
Subject:        Re: To Ivan /sweats...anger

Thank you Barb Mallut, Dennis Greeneand DebbiWHite.

 I HATE PD today!!  I feel like throwing plates and smashing them . can
you relate?  Feel like my temper is going to explode.
Don't know why these feelings are dominating.  What happened to peace??

  I'm feeling trapped and depressed today..have a fever, sweating
whenever my meds kick in. get soaked-FIVE T-shirt changes today.  This
sweating is driving me nuts. Wonder if itsNADH....why am I sweating?  Is
it Sinemet? Is it Mirapex.

Taking 27 pills a day.  Managing is getting overwhelming.  No VIvian like
Don has.

   Looked in the mirror at a VERY tired unshaven man who looks roadweary.
Getting up every three hours at night is taking a toll on me. Looking
drawn.

I am  So pissed at the NPF not answering me. Wish the LIstMEMBERS could
put the screws to the NPF decision-makers.  Wish the  Listmembers could
fax and call and write I am going to post again on NPF tricks.

 Feel so frustrated by having to go to City Welfare...where is the
miracle-it's your letters about massage,  and Debbi White who noticed
that I lost my kitty last year in the fire...
Thank you for writing.... a ray of hope on a black day of gloom.

IVAN
^^^^^^GREETINGS  FROM^^^^^^^^^^
Ivan Suzman  47/10   [log in to unmask]
Portland, Maine   land of lighthouses     deg. F
***********************************************************

On Sat, 11 Oct 1997 13:53:04 -0400 Barbara Mallut
<[log in to unmask]> writes:
>Ivan, m'friend....
>
>I've been thinking 'bout ya the past few days and want to let ya know
>how much
>I like you and appreciate you.  Respect, too....
>
>We're both walking on similar paths, and are heading towards the same
>destination, but we're each getting' there in our own way.  Neither
>route is
>the wrong one... just different from the other.  I value the
>differences in
>you that makes you so uniquely YOU and enjoy the glimpses I get of you
>traveling your path even as I travel mine.
>
>I admire your tenacity immensely (even tho it sometimes frustrates me)
>and
>that determination to get accomplished those things important to you.
>
>I treasure your wonderful way with words when you take a mental flight
>of
>fancy and share it with us here on the List.  When you paint a verbal
>picture
>for us, I can see everything you describe down to the tiniest, most
>colorful
>detail.  THAT'S the power of your words, Ivan....
>
>Finally, I recognize I tend to jump on your back when you come out of
>what I
>consider to be 'left field" and tell someone the "correct" way to
>speak.
>Please know my response is more of a "knee-jerk" one rather than a
>spiteful
>one meant to cause you any pain.  I'd never want to do THAT to anyone,
>much
>less someone like you whom I really care about.
>
>You're "good people," Ivan.... and I'm glad to know you.
>
>Love to ya.....
>
>Barb Mallut
>[log in to unmask]
>