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the case in the recent death of Sidney Dorris, a PWP, and a leading
advocate. I use an herbal tablet daily, but still suffer from painful
bleeding, and from uncomfortable fullness, unpredictably.
HYPOTHERMIA
My thermostat can be reptilian. This past June, I had to wear winter tights
and gloves on several warm summer nights. The air temperature was in the
low 70's. I was imprisoned by hypothermia, and I felt like I was marooned
in the Arctic. My fingers and toes are so susceptible to cold air that even
a cool breeze across the back of one wrist can chill an arm and shoulder. I
keep windows in both my car and house closed up when most people would
relish the fresh air. If I sit outside, now that it is September, I chill
down quickly. I have an electric blanket to use outdoors. It gets plenty of
use. I now have to wear work boots and heavy winter socks, if I am not in
direct sunlight, if the ambient temperature drops below 75 degrees
Fahrenheit. The slightest cool breeze on my feet may cause my toes to curl
up instantly, and stop me from walking. In the winter, I may need to raise
the temperature in my bedroom to close to 80 degrees. This is obviously
extremely hot for any visiting worker. Meanwhile, woodstoves may be going
at the two ends of my house, not only for rustic charm! In fact, they are
virtually a medical necessity.
MOBILITY
In my home, I have a walker, a pair of crutches, double bars on all
staircases, grip bars, ballet rails, and knotted mountain-climbing ropes. I
need all of these devices to get around my home. I avoid riding with
friends on errands if they cannot be very, very patient while I position
and set up all of my travel necessities. I also need to be sure that
whoever is driving is able to pull me out from the passenger seat by my
hands, elbows, and back, if their car has no grip bars.
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MEDICATIONS CAUSE EMERGENCIES
PD medications are well-known to cause hallucinations, anxiety and
dizziness. For four hours every afternoon, and for one hour each evening, I
am usually on my own. If any of my four medications kicks in too strongly,
while I am alone, I could be in trouble. I am eligible for personal care
attendant assistance at home for 13 hours in any 24-hour day. So there are
gaps when I am on my own.
This creates very dramatic situations. At about 11:00 PM on a rainy evening
last November, I started to feel anxious. I was concerned that the
methamphetamine that is a by-product of the body's breakdown of Eldepryl,
one of my medications, was making me too "hyper." I informed my attendant
that I was not well. She is elderly, and suggested that I call an ambulance
if the uncomfortable feeling worsened when she was out on her break. I
called a local help line, and after talking, I felt better, so much so,
that I fell asleep in an armchair, with my snoozing pet cat for company.
But the help line, following their protocol, but not having asked me,
called 9-1-1.
Against my protests and explanations, for the anxiety had gone, I was
carried out of my own home, strapped on an ambulance bed, and taken to an
emergency room. My "doughnut ring" of a week's PD medications was taken
from me. Now I was faced with no medicines, a deep off- period, exhaustion,
and huge anxiety.
My attendant finally found me in the hospital, nearly paralyzed, at 1:45
AM. I was 90 minutes late for my post-midnight medications, praying that I
could get my pills back. I was being evaluated mistakenly as a psychiatric
case, and was not even allowed water or orange juice! My low dopamine state
added to my low sugar supply, twisted my face into a Parkinson's
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"mask." I felt as if I was in a death trap. That hospitalization still
arouses great fears in me, and although prayer kept me somewhat calm, I
worsened steadily until my caregiver finally appeared. She had to hurry
around and shout at hospital personnel for 20 more minutes before I was
allowed to use my medications at 2:05 AM. I thought that I might pass out
or die right there in the E.R.!
Medical workers are not the only ones who know little or nothing about PD
and its fluctuations. In the past decade, I have been stopped while
driving three times, and every time, the law enforcement officials do not
have a clue what a PWP in a slight state of excessive movement is like.
Once, after being followed for three miles, nearly to my house, the blue
lights went on behind me. I pulled over, just five houses from my driveway.
"You are weaving," said the policeman. "Let me see your driver's license,
registration and proof of insurance."
A few moments later, despite my explanation that I was going through end-
of-dose symptoms (dyskinesia) that made my shoulders and neck move, and
simply needed to get home, I was forced to look into a flashlight, through
slightly dilated pupils. My eyes were nearly blinded for at least 10
seconds. I may have sustained optical injuries.
It was February in Maine. The police officer next asked me to walk a
straight line. Between my hypothermia, the stress of being stopped, and my
anxiety, I told him, "Please, let me drive home and get warm. I have
Parkinson's Disease. I am not drinking. I am not on drugs. And if I stay
out in the cold any longer, paralysis will set in."
I got back in my car, and for once, I was lucky. The officer let me go home.
EDUCATION NEEDED
I think both of these situations illustrate the need for training and
education about PD at all
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levels of personnel in our legal and the medical communities. In each
instance, PWP's could provide training seminars, if a budget were present,
so that my safety would never have been at risk.
Maine's 1999 House-Senate PD Resolution, SP 753, states that such training
is needed.
IMPOVERISHMENT
I am a former medical school professor. How cruel the twists of fate can
be. Now, with PD, I am dependent on donations of food for my pantry and
freezer. With an income of $687/month, which is derived from Social
Security Disability Insurance, and with a $708 / month Medicaid cap on
total income, I am never able to produce enough income to live
independently. My checkbook is frequently emptied before the 20th of a
month, and always by the 28th or 29th of any month. It says $55.96 right
now. I know I could work part-time, but to pay my attendants, my doctors
and my prescriptions myself would require that I amass $4,000.00/month for
these medical expenses!
My home is my refuge, and yet, despite it being both hypothermia- and
wheelchair- ready, I face foreclosure proceedings, and nameless rounds of
social worker investigations. This reality is shared by my PWP friends in
Ohio, Pennsylvania, Virginia and elsewhere.
UNDERPAID MEDICAL ATTENDANTS AND FLUCTUATING HEALTH
My workers get paid by a Medicaid Waiver agreement between a
payroll-writing company and state government. We who are disabled are a
small-budget group in a Bureau of Elder and Adult Services that has no
remedy for younger, long-time disabled persons to receive care AT HOME.
It operates on a model that restricts us from full-time assistance at home,
and stops us from being truly independent. This is why I am at the
so-called "maximum" of 13 of 24 hours of help each day.
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This situation is a recipe for long-term anxiety and insecurity. I become
vulnerable from lack of assistance, and then I am blamed for not being
resourceful enough to keep myself going. I am now considered to be
"nursing-home eligible," rather than being given enough assistance to make
a real stab at living independently, and even contributing to the tax base.
The personal care attendants who assist me can come at the hours I choose,
but the Medicaid Waiver program pays them $6.25 per hour. I therefore have
an unstable workforce. At McDonald's restaurant three blocks from my house,
the pay is $8.50 per hour, and a medical insurance plan is available. My
workers are not eligible for pay raises without an act of the State
Legislature. Some have not had a raise for two or three years.
I wish I had a supply of money to pay them supplementary wages. I do not.
What I have to do instead, is to buy their food, invite them to use my home
as theirs, including laundry facilities, cable TV, and prvide a separate
telephone line. These limited amenities still do not prevent short-term
commitments, and many workers discover that the work is too difficult to
stay very long.
A WHOLE NIGHT"S WORK FOR ONLY $9.00 !!
My overnight workers are paid $9.00 per NIGHT, not per hour. Family members
are prohibited from working in my Medicaid Waiver program, by state law.
This leads to my having nights alone, which are very dangerous. I had one
just last week, when an overnight worker's telephone ringer was switched
off. I had to go out and sit at an all-night restaurant, and drive home
alone to my house. I managed to stay up until 3:30 AM, but by 6:00, I woke
up, not only exhausted, but in the "off" state described earlier.
Parkinson's Disease can be brutal at holiday times. Last year, all 9 of my
part-time, underpaid
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