Greetings from Texas:
First, a few comments from the last three day's postings:
TO: Elizabeth Southwood
Your story about the "six gentlemen" who visit you every day was delightful!
I'm glad to see there are others who maintain their sense of humor while
facing this horrid disease every minute of the day. I firmly believe that a
good sense of humor can help you deal with most anything. Best wishes for
continued laughs.
TO: Kees Paap
Hello! I'm a newcomer to the list (about four weeks). I found your update
covering the last year to be extremely interesting.I also am very impressed
at the amount of work you are doing on behalf of PWPs everywhere. Even in
print, your optimism and high spirits are contageous. And any Parkie who can
still play volleyball and table tennis gets my vote as a determined fighter.
Please keep us updated on you and your activities. Best of luck from Texas.
TO: Jefferson Harkins
Good for you! I congratulate you for NOT accepting one doctor's opinion that
"nothing could be done" for your father. You have discovered an important
fact about doctors and the practice of medicine: Doctors do not know
everything. If you don't believe you are receiving the care and attention you
deserve, talk to another doctor. Hope the solutions the second doctor
recommended will work for your father.
TO: Brian Collins
Thanks for your responses to my first messages. I really enjoy reading your
postings. Your are very articulate and you appear to be very knowledgeable
about the subject. (I guess if you've had PD for almost 20 years you would
be.) I'm wondering how you tolerate Sinemet after taking it for 15+ years.
How many mgs a day do you take? How often? Are you experiencing any bad side
effects? Are you confined to your home and your computer or are you still
able to move around the city where your live?
Now for something current:
When I introduced myself a few weeks ago, I told you I was a writer. I've
been earning my living writing (news, advertising, public relations, business
communications) for more than 30 years. After I was diagnosed with PD 5 1/2
years ago, I started writing novels and short stories in my spare time (No
sales yet, but who knows? Maybe next year. I do have an agent in New York
who's trying on my behalf.) I also try to submit free-lance pieces anywhere I
can.
Recently, I submitted a "guest column" to the Houston Chronicle about dealing
with the Parkinson's monster. What do you know, they actually bought it! Paid
me U.S. dollars.
I submit the following for your reading pleasure--- not because it's that
good, but as an example of the ways all of us can contribute to speading the
word about PD. Whatever your talent or skill, try to put it to work in
communicating to the masses messages about what we face. Be creative. You
don't have to be a writer to communicate.
By the way, this appeared on the front page of the Chronicle's Sunday
Lifestyle section today.
(reprinted from the Houston Chronicle, Sunday, November 17, 1996)
PARKINSON'S CAN TURN
LIFE TOPSY-TURVY
by Stan Houston
Billy Graham. Muhammad Ali. Janet Reno. Mike Driscoll.
None of these people are my friends. None of them even know me. In fact, I'm
not certain any of them have ever met each other, But the world-famous
evangelist, the ex-heavyweight boxing champ, the U.S.attorney general, the
Harris County Attorney and I have a common bond. We're all part of a
fraternity no one wants to join.
We have Parkinson's disease.
Parkinson's is a brain disorder. Simply put, brain cells gradually stop
producing the substance (dopamine) that carries signals controlling movement
to other parts of the body. Reduced dopamine means limited signals.
Eventually, you lose the ability to move without the aid of drugs.
Unfortunately, the drugs often lose potency after several years of use. They
also can produce severe side effects --- nausea, insomnia, depression and, in
the later stages, wild uncontrollable movement of the head, arms and torso.
Those of us who share this nightmarish neurological link often find our lives
turned into a bad imitation of Lewis Carroll's Wonderland. Here, says the Mad
Hatter, swallow this pill to stop those tremors. Sure, the White Rabbit
chimes in, pop more drugs so your hands and legs will work. Say, the Jack of
Spades muses as he waves his sword, how about a brain operation today to
reverse those nasty side effects?
Sometimes you wish the Queen of Hearts would put an end to it by yelling,
"Off with his head!"
But that would be too easy.
Parkinson's disease is not fatal, just infuriating. It robs you of your
independence, steals part of your future, and fights to turn your life into a
three-ring circus of false normalcy, pill schedules and drug-induced
depression.
It becomes your consant companion, much like an older brother who follows you
everywhere, reaching out every few minutes to smack you as a reminder of
who's in control.
But only if you let it.
How do you live with a bully?
You learn to compensate, to be flexible, to be patient.
My Parkinson's companion moved in 5 1/2 years ago. I was resentful at first,
preferring to live only with my wife (Shirley), my dog (Garp) and my book and
video collections. But it behaved, acting benignly enough at first to lull me
into a common early-years fantasy shared by many PWPs (People With
Parkinson's).Hey, this isn't so bad, I told myself. Take a couple of pills
three times a day and life goes on. I can deal with this.
But I soon learned a difficult lesson. With my house guest, nothing stayed
the same. Parkinson's is progressive, so my adversary's negative impact on me
increased as the years passed. Any time I got cocky, thinking I'd discovered
how to deal with my uninvited guest, it would throw something new at me.
Much like Alice in Wonderland, PWPs must constantly employ their wits to
outsmart their live-in adversary. Example: When you step out of bed one
morning and fall face-first to the floor, you realize an adjustment is
required.
How does one shower, dress, eat breakfast and prepare for work when one can
barely walk? You buy a walker, those three-sided contraptions you see
80+-year-olds pushing around in nursing homes. Sure, your're only 53, I told
myself as I tossed my American Express card at the clerk in the medical
supply store. You can push a walker around your home every morning until the
day's first pills kick in. It's a small price for maintaining mobility.
After a few years, you realize your entire life has changed. Even the little
things. Not long ago, my first priority before leaving the house was to make
certain my wallet and keys were securely stuffed inside my jeans pocket.
Now? Who cares about credit cards and cash? Don't let me out the door
without at least three emergency doses of pills.
Eventually, you learn there's only one way to deal with this madness:
acceptance. Treat the disease as you would any other aspect of your life, no
more, no less. Don't let it overwhelm you, and above all don't let it change
you. Recently, a close friend told me, "Parkinson's has become a part of you,
but it hasn't become you." That, I believe, is a goal every PWP should adopt.
But even with acceptance, fantasies about a return to a previous life
struggle in our Parkinsonian brains like a mad man in a straitjacket. We
accept our fate, but would still welcome a reprieve.
The National Parkinson's Foundation spends millions every year on research.
Their goal is to find a cure by the year 2000, a little more than three years
away.
Hurry, guys. I have a house guest who's overstayed his welcome.
-30-
Stan Houston ([log in to unmask])
