Hiya Gina...

I have ALREADY been on SSDI and Medicare for several years!
And much like your initial experience in applying for SSDI, I had
to use an attorney during the 3 years it took to finally get
awarded of my benefits by an SSA judge. THAT was the single
most demeaning experience of my life.

THIS is my SECOND go-round, as I'm trying to get my SSDI
benefits RESTORED after working out of my home for
22 months - after notifying SSA and doing everything exactly
as instructed by them in order NOT to lose my SSDI benefits
while working.  I also followed their instructions regarding
end-of-work-and-return-to-SSDI-benefits-when-quitting-work-
within-36-months-of--starting-employment.

Frankly, Gina.... In going by THEIR book, I've been screwed
royally by Social Security, and THAT'S why it's so darn
nerve-racking THIS time.

By the way, I've spoken with my attorney on the issue of how
demeaning the first experience was - where the judge did
everything in his power to break me down then and there.  And
it worked..... THAT time

THAT judicial bullshit will NOT work THIS time!!!  I'm NERVOUS,
but not scared.  I'm ANGRY and I'm prepared to use that anger -
AND all the PD-related knowledge I've picked up in the many
years since that initial hearing.

My attorney is ALSO well prepared legally  and she has
encouraged me to express my anger in whatever way I feel
will best help my case, keeping in mind that the judge IS the
JUDGE, and it's best to use my anger as a tool to win my case.
I intend, if forced, to turn my anger into a PASSIONATE appeal
for justice.

A NOTE:   One of my biggest problems in this type of situation,
one where the LEVEL of my disability must be judged by
someone with only a LITTLE knowledge, if ANY, of Parkinson's
Disease (that "little knowledge" also includes the average
neurologist who has not specialized in movement disorders).  This,
because at first glance, it looks like I don't have a movement
disorder at all because I'm always careful to be seen when carefully
medicated, and if possible, well rested (so I can drive myself to the
appointment

Also, virtually ALL non-movement disorder medical professional,
AND the average lay-personsl seems to expect someone with
PD to have a noticeable tremor or dyskenesia-type movement,
and MY major PD symptom (amongst dozens of other miserable
internal symptoms, and a FEW subtle, but important external
symptoms like loss of voice, loss of balance, etc.) has
been STIFFNESS.

Well, THIS time I'm NOT going to be well rested, and I WILL take
more than my usual dose of Sinemet, and I WILL not try to hide
or disguise any symptoms of the disease from the judge.

THIS time, I AM going to dress with my usual flair and style
instead of the drab and sedate clothing that was suggested
by many who've been in a similar experience!  I AM going to
wear nail polish, AND some make-up because I LIKE looking
my best in public!  And I will NOT PERMIT **ANYONE** to
stomp on my ego and demean me in order for me to be
declared "disabled!"  DAMMIT - I *AM* disabled, and I'm
ENTITLED to my SSDI benefits!

Social Security, WATCH OUT!  On Monday the 21st, I'm going to
be SOOO stoked!!  I'm going to be passionately verbal in own my
cause and in OUR defense of Parkinson's symptoms being so radically
different from patient to patient, AND being and MUCH, MUCH
worse than the average person knows!

I'm READY to take on the devil and WIN!!!

(oh golly, I sure would love to order in a pizza for lunch right now!)
<and then maybe take a nap> (So much for all that passion) <giggle>

Barb Mallut
[log in to unmask]



























----------
From:   Parkinson's Information Exchange on behalf of Gina Cass
Sent:   Monday, September 14, 1998 9:40 AM
To:     Multiple recipients of list PARKINSN
Subject:        Re: Short-term Disability Rest of my life type stuff.

Dear Barb:  Hi there girl!  I had my share of meetings with SS.  The first
time they turned me down.  I wasn't ill enough for their tastes.  You go and
see the doctors they choose for you.  Along with reports from your doctors.
The general opinion was that SS did not approve anyone on the first try.
Unless you were just a veggie, then after some reluctance maybe.  Second try,
I had just received the diagnosis of PD. I was upset, I cried, (STRESS) I
couldn't write, shaking was so bad that I was very lucky I could drive.  The
woman behind the counter said well you'll have to fill out some more
application forms.  I showed her my hands and asked (nicely) if someone could
help me.  She said no, asked my I could not fill out the forms.  Put up my
hands and shook in her face.  She finally found a kindly little man to help, I
just cried throughout the whole thing.  Second rejection, I hired an attorney
(they usually wait until you collect to ask for money, nothing up front).  For
the third appeal with the attorney I hired, I asked for a hearing in front of
a judge.  That was April, I was denied a hearing before a Judge but was
approved for Disability.   My first check was deposited in August for July.
No checks anymore, it is deposited into bank accounts automatically and not on
the 1st of the month.  Now it have something to do with when your birthday
date is.
Barb, it is not that it is so scary, but that the Government has kept the
people in this intimidation mode for so long that it is hard to go and ask for
help, even though we have paid into this fund.  We are actually drawing on our
money.  So, let me have my money back.
I believe the key is Barb, don't give me.  Do what you have to do to help
yourself, within reason, Barb, but don't let them keep that from you.  I am
sure when I say this it is the truth.  Take all of us with you.  I have a mean
shake also.  And Yes STRESS does make PD worse.  The tremors are so bad some
times, I
llllllllllllllllllllllllllllllllllllllllllllllllllllll~~~~~~~~~~~~~~~~~~~)()()
())())())***************  I don't know what my future holds but I was hoping
it won't have PD in it, but for now it does.  But I was also able to meet
someone like you.  So thank you PD for the good folks I have met.


TTFN
Gina
Hugs BIG HUGS ((((((((((((((((((/BARB/)))))))))))))))))))))))
{{{{{{{{{{{{{{{Barb}}}}}}}}}}}}}
So, at this hearing I'll bring my Caffeine Free Diet coke and my Smarties
candies.  I will try to be quiet but well it may be impossible.  OK, I'll
leave the girls at home.