Dear Stan

You don't know me. I'm another  PARKINSN LIST member who has enjoyed your
posts. They've been good medicine for me, and I thank you from my heart. A
while back you wrote an article which I think you had printed in a newspaper.
I thought I'd properly saved it, but now I can't find it. I'm wondering if
you might still have it and provide it to me with your permission for me to
send it to Arizona PD Support Groups and to public mdium sources (newspapers
etc.) with hope that they would make it public. That would surely help us
promote public awareness of PD and encourage support of the Udall Bill. Plese
send your response to my e-mail  [log in to unmask] Thank you for your
consideration.

Like you,  I was forced to leave my job and enter
the world of the Retired/Disabled, and that also overwhelmed me.
Although that was several years ago and I "got over it", eery once in a while
I have to get over it again - but I do. So my participation and followed
through with just about anything tends to go up and down. I raised my kids
3 kids from babbies to adults without a dad, without child support or any
other type of assistance, attained what I wanted in a responsible job, and
took pride in my self sufficient lifestyle. I finally remarried only after
the poor fella (my hubby now) thoroughly understood my need to "continue
being a self sufficient person". I didn't want him to be burdened with the
weight of three children that weren't his, although he insisted he was
marrying us as a "family". Low and behold, very soon after our mariage, I had
trouble and PD moved in. Talk about overwhelmed! I soon enough learned I had
to "eat my words about being self sufficient. I hit hard rather suddenly
after a while of 'not so bad' symptoms. Like you, I suddenly found myself
crawling. And even yet, I thought I could be brave.Overall it was hell.
Sinamet and nothing else was cooperating. That was about two years ago. Now,
I'm taking less Sinamet, and my off times are less severe and less often, I'm
not sure why. I went through ups and downs, mostly down, but slowly but
surely, I'm doing better.My friend Tom was diagnosed in his twenties and now
he's in his fifties. He's "fallen in the pit" more than once, but he's much
better than he was when I first met him 8 years ago (he didn't used to, but
now he's driving, walking almost normally, added a new room to his family's
home by himself).He's my inspiration, and my husband is my lifeline and my
heart.  For what it's worth, just had to share that with you. We can get
better.The nightmarish period you're going through wil hopefully pass. I'm
glad you're seeking out the best medical care possible. Tom and I have both
participated in studies at Barrows Neurological Center, we both have been
patients of two world respected Movement Disorder Specialists &  PD experts.
I've also participated in studies at Arizona State University and the
University of Arizona. I've received care from Movement disorder specialists
at Tucson's Neurological Clinic at the University of Arizona with at
Scottsdale's Mayo Clinic. I've to see Neuro surgeons in California about
fetal tissue transplant surgery (I was chosen for the surgery but after
learning more, I declined - for now), and I've been seen at the University of
California in Los Angeles UCLA medical Center.  I've learned from each, and I
feel I've paid my way for the education not onlyby paying the bills, but also
by offerring myself as a Guinea Pig for their studies and tests. I'm sharing
all this with you just as a qualifier for my advice to you. "BE CAREFUL WHEN
OFFERING YOURSELF UP FOR STUDIES AND TESTS" - BY ALL MEANS, DO IT... I STILL
AM, but keep in mind.. many experts, not all.. get carried away with the
excitement of "making a breakthrough" or "getting the money in from the
research /drug companies for their clinics", or "to get their findings
published" or whatever glory... and the best interest of the patient as in an
individual human being can get buried in their stack of priorities. Be sure
to get copies of all test results AS THEY DO THEM. iT CAN HURT YOU NOT TO
HAVE THE RESULTS AND JOURNALS AS THEY ARE RECORDED. It's amazing how
defensive they can get if you need a copy of your "medical records" later. I
tried and I was told they were "confidential" - even from me. I know that's a
bunch of crock., but to pursue it takes too much energy. The medical board in
my state is self regulated, it takes two years for the board to even see your
complaint.
Anyway, 'nuf said.

Best wishes
Maryhelen

PS  Good Lucck on your book  "The Pope's a Little Shaky   And I'm Not Doing
So Great Myself (Stumbling Through Life With Parkinson's)". Sounds great!!

Will keep you posted on my progress.



A while back, a poem "An Open Letter to Parkinsons" was posted (copy shown
below), with the author listed as Terry Ogden. I don't have Terry's e-mail
address, so I'm hoping Terry reads this and responds or maybe a list member
know Terry and can forward it to her.

I'm seeking Terry's permission to send the poem to a couple newspapers or
other public media sources (magazines radio, TV show) to request that they
show it to the public here in Arizona. I believe it would be helpful to the
cause (publicize the need for public awareness and support for the Udall
bill).

I'm sorry for not writing to you directly, Terry. I rarely get through to
read all the Parkinsn List postings anymore. I awkwardly skim the author
list, subject line and sometimes the first line or two of the body then try
to copy things I might be able to read later. Many times I can't get to that
either and just start deleting. In that process, your poem caught my eye and
I finally took the time to read it. As a PD-battle-worn-Parkie, I strongly
relate to it, as I'm sure most of us Parkies do. The general public may not,
but I'd like to give them the try. May I have your permission to do so?

Thank you for having composed such a beautiful piece and for having posted it
to share with us.

Maryhelen Davila
[log in to unmask]
Phoenix Arizona
Diagnosed 8 years ago at 37 years in 1989