Friends,
^^^^^^WARM GREETINGS  FROM^^^^^^^^^^^^^^^^^
Ivan Suzman         48/12         [log in to unmask]
Portland, Maine    Land of lighthouses  61     deg. F
********************************************************************
Dear friends,

It is so great to be the subject of so much concern.  Thank you so much.

It is true that I am feeling exhausted and have had to reduce my
activities.  My caregiver situation remains very difficult at best. I am
still living alone, and after 4 months, I am wearing thinner.

Oncoming colder weather requires me to run woodstoves to offset the
Parkinson's-like cold that settles into me otherwise.I am keeping my eyes
and ears open like antennae, and several signs have been posted for me
around the area colleges, nursing schools and hospitals, and churches,
health food stores, and elsewhere. No live-in caregiver has been
attracted so far.

The good news is that although I never made it to visit listmember Hilary
Blue in September (janet paterson mentions this trip), Hilary will visit
me in early October.

Some of you know  49-year old Lynn Phillips of Rolling Forks,
Mississippi.  He is hospitalized at the Baptist  Hospital in Jackson, and
I have been trying to help him and his mom, who is his caregiver.  Lynn
was at the Parkinson's Action Network forum in Washington, DC in June.

One of my personal goals remains seeing thatthe Udall Act get funded.  I
was promised by Beth Beausang, the health aide to US Rep. Tom Allen of
Maine,  that Tom is willing to speak to  the need to fund it fully, on
the floor of the House of Representatives.  Today, Senator Olympia
Snowe's "point man," a local former State Senator, talked with me about
the $100,000,000.00 we need, and promised to urge her to push for full
funding.

One of my greatest concerns is finding a live-in caregiver who might
become a long-term caring companion. I am spending too much time at home
alone, and this is extremely tiring. Housework and so forth seems to be
under control, but my house is too echo-y and Camilla is right, I am not
a loner-type of person.

One of the coping mechanisms that works to dispel too much isolationg is
to call friends and to visit neighbors.  Another is to be completely
humble and very grateful for my beautiful, handicapped-adapted house and
fabulous back yard, bordered by forest birds singing joyfully every
morning.

My upcoming hospitalizaiton for a hernia repair, whether it is by
laparoscope or external approach surgery, is only tentatively scheduled
for October 14, at Mercy Hospital in Portland Maine.  No definite
decision has been reached.  I did get to my local neurologist on Friday
morning (yesterday) , Dr. John Boothby.  He is an excellent listener, and
he has ordered that my medicines are to be patient-controlled by me and
by a friend who has cared for me every early Saturday and early Sunday
morning for fifteen months, a nurse-practitioner student and artist who
has agreed to be my advocate while hospitalized, Michael Weiss.

One of the most frustrating events has been understanding how voiceless
we as a community still seem to be , when it comes to media exposure.  I
am still perplexed by our lack of support from Hollywood stars. I am very
sorry to read Jim Finn's news that his Australian TV appearance is, like
mine on  CBS-affiliate WMGE, here in Portland, not yet scheduled.

 I think it has something to do with the expectations American, and
perhaps, world society has for the elderly.  It is a monumental
achievement to be as far along as we are as a cybercommunity, and I enjoy
and appreciate our List even if I am tired now, and lurking more than
interacting. But I am both puzzled and pained by our limited visibility
on TV.

My Channel 13 TV appearance about my golf achievement in June, remains
unscheduled.  Jeannette Fuhr of MIssouri, Hilary Blue, my Aunt in
Providence, Rhode Island and perhaps one or two others have made contact
with the WGME sports director, David Eid, but the timing is not right
yet.  Dozens of calls probably reach Mr. Eid daily about the home run
story of Sosa and McGwire, understandably.

I went through a HUGE amount of energy to be filmed putting golf balls,
with my "No PARKINSON'S" pin displayed on the brim of my golf cap.  I was
asked what Parkinson's Disease is, and how it affects me, and of course,
about my hopes for the future.  Unfortunately,. Mr. Eid may not have the
power to get the segment aired for a while.  What more can we do??

A friend of mine is a T-shirt artist, and has worked with me to design
"OUR TIME IS RUNNING OUT" T-shirts,  with an hourglass logo.  We hope to
have the first test-run of 24 T-shirts TODAY--just in time for my support
group tomorrow.  Let's hope this effort succeeds.

Tomorrow is the PD Unity Walk in New York City.  Good luck, everyone!! I
hope you get media coverage!

I am mostly functioning but understandably anxious about living alone at
the moment.  I found an older woman to come in late at night, and check
that I am OK for about 15 minutes, at 8:45, and 12 midnight.  She also
sleeps here and checks me at 3:30 AM.  So I am grateful for her help,
even though
we are strangers to each other and she cannot stay here during the cold
weather that starts around October 10, and lasts for about six months.

I guess that ought to answer questions.  I wish I could tell you more,
but at least I am not lost in space.

I had a very special event happen today.  One of my new caregivers,
Natalie, drove me to the beach today.  As we sat on a large towel,
dressed in light jackets and shirts and full-length blue jeans and
sneakers, I marveled at the fog over the light peach-colored sand, and
all of a sudden, along came a friend whom I had not seen in four or five
years, her children now 11 and 6, and two of their friends.

She had never seen me with a caregiver, and asked what I am doing for
work these days,  I started to think of a reply.  Before I could voice a
response, Natalie quickly chimed in, laughing,

     "Ivan, why he is a Parkinson's Patients' Advocate!"

  Dana and Natalie and I all laughed when Dana, curly red hair blowing in
the ocean breeze, said,

     "Yes, Ivan Suzman, P.P.A."

   Then, as all four kids looked on curiously, Dana added, "It's so good
to see you looking so well"

   I try to choose to be positive, like Dennis Greene just posted, even
though I may be under the weather and experiencing pains and aches.
Attitude is everything, so when I am silent on the List, I am probably
resting from the PD battle, and re-gathering my energy.

  Camilla, Janet, Hilary, Jeannette, Maryhelen, and many, many
more--thank you for  your support. Please do keep in touch; you all help
me battle along.


  Oh, and by the way, Martha, Arlene and others, I have just been
ACCEPTED to complete my Ph.D> in  Anatomical Sciences, describing   and
interpreting fossil hominid bones from East and South Africa, by the
Faculty of Science of the University of the Witwatersrand, Johannesburg,
South Africa, by correspondence.

  Another big goal, to keep me reaching for the best achievements
possible.


Ivan Suzman
48/12
Portland, Maine

On Sat, 26 Sep 1998 08:54:30 -0400 Camilla Flintermann
<[log in to unmask]> writes:
>Friends-- has anyone heard from Ivan in the past few days? I and
>others
>have written to him but had no replies--unusual. If anyone lives near
>him,
>or has been in touch, please respond. I know he was having trouble
>finding
>CGs, and am concerned.
>
>
>        Camilla Flintermann, CG for Peter  80/9
>        Oxford,OH
>        <[log in to unmask]>
>        http://www.newcountry.nu/pd/members/camilla/one.htm
>
>                **  **  **  **  **  **  **  **  **   **
>
>                ** Ask me about the CARE list for    **
>
>                **   Parkinson's caregivers !        **
>
>                **  **  **  **  **  **  **  **  **   **
>