> >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 >