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Hi Scott,

I'm Maggie, 52 years old and diagnosed last September (though I've had
Parkinson problems for several years--just didn't have a name for it).  I
was (am?) a grocery store cashier, and it was just like your "off" days for
me, too.  I had to stand on my feet in the same position behind the register
for 8 hours a day; bag groceries and lift heavy bags and cases of wine; my
legs and my back would scream they were so stiff and very painful.  After
5-6 hours, I'd be so stiff I could barely bend over or reach out with my
arms.  I'd drive home crying all the way--from the pain and the debilitation
and the knowledge that the rest of my life would be like this!!!!!

I toyed for months with the concept of diability.  I put off applying,
convincing myself that things would improve for me if I just give it more
time.  My MD kept adding drugs, increasing drugs, prescribed a cane since
it's difficult for me to walk; and I kept putting it off.  Finally, last
month after working 8 hours at the grocery store and a 45-minute drive home
at 10:00pm, I realized I couldn't lift my legs to get out of the car.  I
just didn't have anymore "juice."  The job and the stress and the driving
were all sapping what my body had left--and for what? So I've applied for
disability finally.

And what an experience disability is.  I'm single, with no other income
except the grocery store.  Of course, for the 2 years it will take to get an
approval of the disability, I'm forbidden to work and bring in any money to
my household.  My house payments, electric bills, medications, water bills,
. . ., are all inconsequential--don't worry, it's ok to live without water,
electricity, medicine . . . it's only for 2 years! So what if you lose your
house--you'll be on disability!

You really have to WANT it and NEED it to survive it!!!!  If you're unsure,
don't do it until you're convinced it's the only thing you can do. They'll
pry into every part of your life for the past 15 years:  symptoms, problems
that interfere with your work, problems that interfere with your household
function, sexual dysfunctions, every job you've had, how much money you
earned in every job you had, every doctor or ER visit, ad nausem.  You'll
spend days and days tracking down birth certificates, bank statements,
social security card, medical records, tax forms, you'll fill out forms
until your hand screams in pain and your eyes cross, you'll spend hours in
the interview, and when it's over you'll be so relieved you won't even frown
when you're turned down and you realize it's all for nothing!

Sorry Scott, to be so melancholy but my world sucks right now and I've got
to go thru this for 2+ years, with no guarantees! So, again, please be
certain that is what you want, then if you are certain, go for it!

Maggie Mauney




on 3/27/03 8:58 PM,  scott burnett at [log in to unmask] wrote:

> Once again as the school year draws to an end, I run out of energy and
> start thinking that maybe now is the time to go ahead with a State
> Teachers Retirement System disability application.  Most days at work
> are on and off affairs, with the emphasis on the off.  Lots of shaking,
> stiff muscles in my neck and back and especially slooooow movement.
> Sometimes I can't even double click the mouse to activate a program, so
> I have to ask my students to do it for me.  Yesterday was really bad
> and I was very much ready to do it.  Today I felt pretty good so I was
> feeling guilty about even considering it.  I guess the reason I'm
> seriously considering applying is that I find that I spend all my
> energy at school and by the time I get hope at 5 or so I've got nothing
> left for my own kids and family.  Many is the night that Daddy is in
> his bedroom, and mom is working on homework with the kids, telling them
> to be quiet because Dad doesn't feel well.  I'm also thinking that if I
> wasn't working I could put off the time when I reach the toxic level of
> my sinemet.  Currently I'm taking five  25/100's per day.  I just had
> to increase the dosage by taking a pill at 4 AM so that I can teach
> until my 7 AM and 11AM dosage have kicked in.  Prior to taking the 4AM
> dose I was off until about 2 PM daily.
>
> Anyway, my 13 year old is kicking me off the computer so away I go.
> I'm 45 years old and have been diagnosed for 5 or 6 years.  Does
> anybody else have these same back and forth feelings?
>
> Scott
>
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