^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
Ivan Suzman 49/39/36 [log in to unmask] :-)
Portland, Maine land of lighthouses -11 deg. F :-) sunny and
Arctic
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Hello List,
It is 11 degrees F. BELOW zero. The woodstove and a quartz space
heater are keeping me happily warm. It is sunny and crisp. Long light
violet shadows of bare sugar maple branches arch over the deep, silvery
snow.
Amidst the beautiful bare trees, threee bird-feeders are receiving
many visits from hungry cardinals, house finches, goldfinches and
chickadees, as well as form nuthatches and tufted titmice.
Can you imagine typing with brown cotton fall raking gloves on? They
keep my fingers just about "comfortable" so that my PD-related pain in
my fingers is gone. I also use a well-worn, comfy pair of L.L.Bean Maine
hunting boots with the thick grey wool inner sleeves. Keeps toes and
soles very warm.
Beyond 1001 tricks to ward off the cold, I am still seeking a live-in
caregiver. My string of luck, with friends covering the frigid nights,
has kept me and kitty Winnie toasty, and functioning about 2/3 of the
last 2 weeks.
But now, when I hear, "Ivan, you always manage," and knowing I am
still searching, I realize that I have exhausted many of the avenues. I
feel like there's a fine line which friends allow you to cross or
s-t-r-e-t-c-h someitmes, but one cannot push friends too hard, or you end
up pushing them away.
At the same time, you have to cultivate strangers, to attract them to
come back to you. But you have to be highly selective.
When the money isn't available or the circumstances aren't right for
caregivers to stay on, you try to last on your own, until the next one
comes along. When I'm alone and an OFF-period begins, and my own inner
voice says, "Call for help!", and you just WON'T call your friends or
family because it doesn't make sense, you start thinking-OK, I might be
young and active, but I need an emergency button("Lifeline") at this
point..
So I have set up a screening interview for 8:30 AM on Monday, January
4, with the local "Lifeline" program director. I have no knowledge yet of
more or less exactly what you're asked. It seems that this will be SUCH
an important interview. It's all about who you have them dial if you are
in trouble, to avoid an ambulance, isn't it?
Can anyone such as Myron in Ohio, or perhaps one or two caregivers,
tell me what kind of questions they will ask? I feel like I am preparing
for a MAJOR examination by VERY high-ranking hospital officials, who
have a great deal of power and who might help or hinder me from staying
at 9 Range Street (my PD-adapted house).
My house is a miracle of PD adjustments. There are so many wonderful
things here-including the heat sources and the lever-type door handles,
the ballet bars and other rails, the floor surfaces, the faucet types,
the fully wheelchair- accessible and handicap-modified bathroom with
bench-shower, the raised kitchen counter heights, the tilt-inwindows for
easy, easy washing; It's really a PD dream house.
So along comes Jan 4 or 5, 1999, on Monday or Tuesday. I'm supposed
to get a second long phone call from the producer of the Jim Lehrer News
Hour. We are supposed to set up a time for a camera crew to fly up here
and interview me, and assumedly, film one or two of the growing entourage
of temporary helpers, and of course, me. Call my house the Maine Academy
of Practical Parkinsonology. Deirdre likes to call the group of personal
care attendants, "The I-- Team" (I for my first name)..
During the nights, however, with no consistent caregiver found-(and
I now have let go of the idea that Jay can do this-he and I have been
talking on the phone--and it just is too much to be arranged--)I am
really don't even know how I'll be feeling for the Lehrer hour, or even
if I won't be let back home by some as yet unknown hospital official or
Medicaid beaureau-chief.
I really can't stay here alone. But of course, since when I am well
(thanks to Tasmar), I actually drive on errands unaccompanied, people
around the city hardly understand how dramatically different life is when
you wake up at night with PD. Then the condition has twisted your
toes, and made you turn into a dystonic pretzel. At the same time, you
are as cold as if you were outdoors in the icy air, although it is
actually 72 warm degrees Fahrentheit in your bedroom!
In sum, many challenges, aew answers, and I am trying to hang on
here at least enough to be filmed for the Lehrer News Hour.
Ivan Suzman 49/39/36
Portland, Maine :-)
