I'll be at the SSDI hearing by 9:30 to meet with my lawyer, and the hearing
itself starts at 10:30, Gina.

Actually, I'd been so caught up in this SSDI thing, that I completely forgot
that the 21at is Roshashana - the start of the Jewish High Holidays.  I got a
rude awakening this evening when my friend who'd' volunteered to drive me to
the hearing backed out because she'll be in synagogue then.

I'm going to go to that hearing tho, and figure that God will understand
'cause looking around amongst his creations here, I can see that HE
understands what the word "priority" means.

If worse comes to worse, I'll just grit my teeth and "drive over the hill,"
(as we l who live in the San Fernando Valley call the City-side of L.A.) in
the heavy morning traffic - about an 1 to an hour an a half drive at that
hour.  I haven't driven a distance like that (I usually drive BLOCKS, not
miles) in a coupla-three years.

Thanks for planning on being with me in spirit, Gina.  That means alot to me.

I'm going to feel the essence of so many dear Parkie friends surrounding me
with their good will and support at that hearing that it'll be like I'm
wearing a coat of armor to protect me from anything the SSA can throw my way.

Warm hugs at ya....

Barb Mallut
[log in to unmask]












----------
From:   Parkinson's Information Exchange on behalf of Gina Cass
Sent:   Monday, September 14, 1998 5:26 PM
To:     Multiple recipients of list PARKINSN
Subject:        Re: Short-term Disability Rest of my life type stuff.

God Love ya Barb:  I am honored to be your friend, the passion and fire coming
in on your email is amazing.  I believe going to court with that attitude will
bring the place down and win for everyone that day.  Even those not going to
court, those not yet diagnosed and those just having a single episode.  You
are a formidable fighter taking on the scores of nonbelievers for all of us.
Thank you lady.  I am with you.  You will be going on the 21st at what time.
Typical court building or SS Office?  Well, I will personally send myself
there with you.  I will be sitting in the audience with my usual look.  Hair
that is silver, kind of a wild style, short, blue eyes, a PD complexion (so
pretty, kicker I never had a blemish in my life), swollen legs, ankles, feet,
walk with a walking stick as I have a very bad habit of toppling over, dizzy
spells, etc., I now notice that I lean to the left my head just wants to go
that way, Aches and pains everywhere so you will hear me moaning in court, and
shifting from side to side can't find a comfortable position to sit, so you'll
look out and find a few of us moving, shifting, groaning, moaning.  Since, my
meds have not settled out yet I still get these major tremors and if I slide a
dose for a while whoa that outa be something.  But with shakes I can't hold
books, magazines, phamlets, etc., in my hands and read so I now have my
headset with me and various little audio books, music tapes, play those
somewhat loud.  I have noticed something relatively new, these little body
jerks, along with the head bobs, lip quivering, leg jumping, throat clearing
visions I should really be convincing.  Get a little group of us all in an
area to "Sit" kinda and the judge won't be watching the other side. He will be
so freaked and say "Hey Aunt Petunia had something like that, but she was so
old. You're to young are you"?  But he would look at us and say "Maybe not."
See, I figure I am good for a few little things.
I want to relate something that happened to me:  It was last Wednesday, as I
was still awake decided to go to bed, lay there put my legs up and pray for
sleep.  I got into the bedroom as I had for seven years the same way.  I was
standing at the end of the King Size Bed trying to sort dog -- dog -- cat from
covers, sheets & comforters.  I was somehow turned around.  I stopped and
waited hoping to hear the snoring a dog or my husband.  All was quiet.  OK,
lets try it again.  I walked to the door, rotated back facing the bed one more
time.  Carefully picking my steps so as not to fall and wake anyone I was at
the end of the bed again.  Lost, I could not find my way.  The picture in my
mind was the other side of the bed and I was over by the door again.  This
time my one dog Bandit sat up and huffed as if to say, "Well come on, I want
to sleep."  So stood one last time hoping to find my way.  My husband asked
what was wrong in a sleep state, me at that moment being to proud, to
independent told him nothing was wrong.  I was OK.  But as I made that final
attempt to find my bedrail, I failed.  I know I ran my hand along the whole
side but could find nothing familiar.  At that point I was crying and so
afraid.  I was scarred, feeling so all alone, so vulnerable.  Oh God, please
help me.  I am sitting crying right now, this poor computer. I was so hurt.  I
didn't realize how much I am beginning to depend on others.  How the sometimes
get so frustrated with me/PD.  It just hurt so badly.  I left the bedroom and
slept on the couch as I had so much lately if I sleep at all.  And at 3:00 AM
there aren't many there to here the lonely cry.  I am angry, hateful, hurting,
cheated, thought of as the disease (we being one and the same).  I am locked
inside this shell that is deteriorating and I want out of it.  I don't want to
shake, and fall, and walk funny, and have skin on my face like so much
leather,  Take this med, take that med, eat this at this time, don't eat that,
report, report, report.  Try to get SSDI or any help at all. Work outside the
home and be punished.  I can't even think of working.  Even the thought makes
the tremors go nuts.  I have dropped things, pushed things, paper plates are a
joke, food just bounces off.  I have such pain tonight.  I am so tired of this
crap.  We get on the list and talk, trying to help each other when we should
be living full, active and healthy lives.  The only active part is how much
our bodies move without our help.  There's a new one, an exercise program
entirely of PWP, what a concept.  Do the PD Shake.  The falling part I can do
real well.  I know that everytime I fall, a new rail goes up.
Boy, I do go on.  I thank for those of you who have listened.  I needed to
vent with people who know what this disease is.  It is hard to talk with
someone who hasn't a clue.  I also, don't know who came up with the phrase
"Side Effects."  Let's try "Main Effects," and sometimes they are worse then
the problem.  Almost makes you want to quit.  I used to do Accounting, I was
an Accountant.  Now, I have mush for brains, I can't key very well do to
shaking (double key, triple key, no key), I can't stay seated due to pains.
So, I am on SSDI with a re-hearing in May 1999, maybe they will find a job I
can do in my physical and mental state.  Ticket taker, but then one of the
meds has lent me to bout of Hallucinations and Paranoia.  I wanna be there, I
wanna hear this one.
Well, I have to blow my nose, whip my eyes and sweep the floor.  Darn
Hallucinations, there are so many things crawling on it.  Yes, Jim and Betty I
went back on the Seroqual, just hasn't kicked in yet.  God bless you.
Thank you for letting me dump.  I am having a really hard time.  Couldn't
guess eh?
TTFN
Gina
Oh yea Med time!!!!!!!!!