>
>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.
>
>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 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 "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 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. 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 provide 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. 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
>