TO: All My Friends on the Network
Please accept my apology if you have emailed or posted messages to me during
the last two weeks. Your support after I was forced to leave my job and enter
the world of the Retired/Disabled overwhelmed me. Also, there have been many
postings from old and new members who needed answers or support from members
of the Network. I feel bad that I have not participated and followed through
on those yet.
I have a rapidly growing stack of printed email and Network messages next to
my computer. Each evening, I tell myself, "I've got to answer those tomorrow
while my drugs are working." In addition, there's the mid-month bills to
pay; dishes to clean; laundry to wash, dry and fold; trash bags to haul
through the woods about a hundred yards to the road; a dog to feed; rags to
spread in front of the fireplace as our roof continues to leak; service
companies to call to fix the central heating and the hot water heater; and a
propane company to call to fill the tank for the hot tub.
And you thought I was going to sit at my computer all day and write novels
during my retirement.
My caregiver/wife suggested that since she now was pulling in the biggest
income and I was stuck at home, I should take over the responsibility of
"house caregiver." Of course, I took that as a challenge.
That's where my problem comes in. I can imagine the conversation between
those nasty little brain cells two weeks ago when I "retired."
"All right, gang. This jerk thinks he's got it easy. Live the good life. No
more bosses. No more nine to five. No more rush hours on the freeway. Sit at
home and write. Play a few video games. Devote more time to the Network.
Boy, has he got a surprise coming! Are we going to screw him up!"
I don't know what has happened medically, but suddenly everything seems to be
going wrong. Sinemet is living a life of its own now, coming and going as it
pleases, often leaving me with five to six hours during the middle of the day
when I can do very little. When it is working, I'm experiencing random dizzy
spells and short periods of nausea. Dyskinesia started in my legs, usually in
the evenings after the drugs kick out. Toe cramping (a popular Network topic
lately) began last week on my left foot. My ability to walk when the Sinemet
isn't turned on has quickly taken a nose dive. Two days ago, I stood in the
dining room, grasping my walker, humming that favorite Top 10 tune,"Heel,
Toe, Heel, Toe." Unfortunately, my legs and feet didn't know the lyrics. In
desperation to reach the downstairs bathroom, I told myself, "To hell with
this," and crawled on my hands and knees across the room. Yesterday, I
checked out the prices of wheel chairs.
Well, Stan, I hear you saying, why haven't you called your neuro?
Because, you hear me answering, I'm "in between" doctors.
Went to my neurologist two weeks ago so he could sign my disability forms.
During our short meeting, I mentioned some new minor problems and inquired
about other drugs. His response? No company has come out with any drug
during the past 30 years that works better, improves upon, or helps Sinemet
in any way. Stick with the Sinemet and Eldepryl, he instructed me as he left
the room, until you're ready for surgery.
My response? On Tuesday, February 4, I have an appointment with a specialist
at The U. of Texas Health Science Center's Neurology Clinic in Houston. I was
informed over the phone that this doctor uses "everything available" ---
including new drugs and physical therapy --- to treat his patients. "He works
for a university hospital," the woman said, "so he's oriented toward research
and experimental techniques."
Until then, you may not hear from me, depending on how my drugs function and
how often I have to wash dishes and take out the papers and the trash . . .
"or you don't get no friendly cash". . .oops, sorry about that. Coasters
flashback.
I'll report back to the Network after my meeting with the new neuro. Until
then, stay well and try to laugh at least once a day. It's good for you.
Stan Houston
"The Writer from Texas"
(Hi Marling.)
PS: Almost forget. Have an idea for a book that I'm trying to write.
Nonfiction. A humorous -- but informative -- look at my experiences with PD.
Tentative title:
The Pope's a Little Shaky
And I'm Not Doing So Great Myself
(Stumbling Through Life With Parkinson's)
Will keep you posted on my progress.
