Dear Friends:
Greetings again from Texas. Sorry to have been absent for so long, but as
I've mentioned previously, I seem to be busier now as a disabled retiree than
when I was a working stiff. (Forgive me for that obtuse pun.) As
housekeeper/business manager/bill payer/grocery shopper/cook for our country
home in Cat Spring, there's always something my wife Shirley wants me to do.
Example: While she was getting ready for work his morning, I had to protect
her from a baby mouse that wandered into our bedroom. Picture this: PWP ---
in pajamas, robe and slippers, with NO meds in him --- clinging to a walker
with one hand and brandishing a fly swatter with the other while yelling,
"Get off the bed and chase him over here so I can hit him!"
Such is the life of a PWP.
Since I haven't posted in quite a while, this may turn out to be a long one.
But, I'd rather do that than post 10 messages on single topics. So here goes.
SAY WHAT?: As a "lurker" for the past several weeks, I've found it
fascinating to observe the ebb and flow of topics and people on the List.
Many new members have appeared during the last month, including at least two
from Texas. Others who once posted often are rarely seen anymore. We have new
names from several countries and new ideas or theories that start
international email debates. (OK. I'll say it here and now. My parents never
doused me with bug spray or weed killer at bed time; I smoked only for a few
years while I attended college; and although I've tried as hard as I can, I
can't seem to make my skull pulsate. But I have my own theory. Like, I really
believe my PD came from that space ship that followed that comet to Earth so
it could take all those cult people back to Heaven. But, then again, I may be
wrong.) In my opinion, discussion and debate about ANY topic related to the
life of a PWP is healthy, therapeutic and welcome on this List.
WHAT ABOUT OPRAH?: Still no response. I've called twice since I mailed the
proposal. Both times I could not get past the operator, who politely but
firmly told me that we would hear from Oprah's staff within three months if
they were interested in our ideas. It's been two months. I guess we continue
to wait.
HOW ABOUT IVAN, JIM, DALE AND ALL THOSE UDALL BILL ACTIVISTS!!!: Great job so
far, guys. Good luck in Washington. We greatly appreciate the time and effort
all of you have put into the state-proclamation and bill-passing campaigns. I
don't remember who suggested it, but I like the idea of a Parkinsons March on
Washington. I can see it now. Thousands of metal walkers clanking in unison
against the pavement as we waddle down Pennsylvania Avenue. The networks will
love it.
LET'S NOT TALK ABOUT THAT: About two weeks ago, Barb Mallot and Dennis Greene
posted two of the most revealing, fist-in-the-gut, wish-you-hadn't-made-me
admit-this letters I've seen since I joined the list eight months ago. Barb,
dear, your essay about emotions colliding when you read caregivers painful
reports on "last stages" and "nursing home experiences" brought me to tears.
(God, I didn't realize how much I would hate typing those words until I did
it.) Thank you for having the courage to bare your soul. And Dennis, you hit
it perfectly. That's the way I'm surviving --- one day at a time. If I let
the "what if's" and the "may be's" dominate my thoughts, I'd go crazy.
Belated thanks to both of you for saying what many of us felt.
STAN AT THE WRITERS CONFERENCE: A quick report on my experiences at the
Houston Writers Conference in mid-March. Had to make two presentations in
front of two-hundred people during the awards banquet. Meds responded well;
had no problems. Had Shirley escort me to the podium just in case. Won three
awards in the Unpublished Manuscript Contest: first place in short story,
second place in maintream novel, and second place in mystery novel. More
importantly, the literary agent who judged the Mainstream Category liked the
first chapter and synopsis of my satire about Heaven so much she "courted" me
all weekend. Finally told me she wanted to represent anything I wrote based
on what she had read. In addition, the editor from Avon Publishing who judged
the Mystery Catagory like the first chapter and synopsis of my amateur sleuth
novel enough to invite me to submit the manuscript for consideration. All in
all, a successful weekend that may help me get published someday.
STAN AND HIS NEW DOCTOR: Visited with a new neurologist about a month ago. He
suggested I try a new combination of meds:
After Breakfast: 1 Sinemet CR (50/200)
(6:30 - 7:00 am) 2 Sinemet (25/100)
1 Eldepryl
After Lunch: Same as breakfast
(12:30 - 1:00 p.m)
After Dinner: 2 Sinemet (25/100)
(7:00 pm)
Bed Time: 1 Sinemet CR (50/200)
(10:00 pm)
Quick addition for those of you who find math difficult. That's 1200 mg of
Sinemet per 24 hours, up 200 from what I had taken for several months. But
the combination of CR and regular Sinemet seems to be working. Now, I'm "on"
most of the day and evening, and do not feel as time-contrained as when I
could only count on two to three hours of "on" time in the mornings or
afternoons. I'm getting a lot more accomplished most days. So now I don't
feel so guilty during any "off" periods when I am forced to sit in front of
the TV and wait until the next dose of meds kicks in. (By the way, I no
longer can walk when the meds are completely gone. Have to buzz around the
lower floor in a snazzy wheelchair. This is really a strange disease. One
minute you're in a wheelchair, the next you're running around the house
trying to catch up on chores you should have done while you were watching
TV.) I have only one big problem now: lack of sleep. One or two nights a
week, I will sleep straight through for six or seven hours, but the other
nights can range from two to fours hours. Once I wake up at 2:00 or 3:00 am.,
I'm up. I usually pass the time reading, surfing on my satellite dish for
good B movies, or playing on my computer (if my hands are not too stiff.) I
hesitate to take extra Sinemet just so I can function in the middle of the
night, so I wait until breakfast. Although dyskinesia is not a problem now,
my new doctor says I could possible be a candidate for a pallidotomy within
the next year. I guess I'll deal with that when it comes.
That's all for now. Stay well and remember how to laugh.
Stan Houston (54/6)
Cat Spring, TX 78933
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