>
>workers needed time to go home for the holidays. My contingency plan is
>for friends to assist me, in a world where there are no provisions for
>home-care workers to be paid enough to attract them to assist us during
>holiday periods. When I ran up telephone bills last December, both from my
>own use to break the isolation, and from my caregivers' uses, I was later
>told by the city welfare administrators that I was guilty of overspending
>my resources.
>
>NO CLINICS IN MAINE, NEW HAMPSHIRE OR VERMONT?
>
>As far as I know, there are no Parkinson's clinics in Maine, New Hampshire
>or Vermont. The correctly specialized PD nurses, physicians or physicians'
>assistants, nutritionists and psychiatric workers do not exist, except in
>the giant urban jungles of Boston. The vast majority of diagnosed and
>undiagnosed PWP's NEVER have the good fortune to seek specialist clinics.
>One wonders if something can be done about this. The American Parkinson
>Disease Association uses the estimate of 3500 persons with PD per
>Congressional District.That's a lot of folks with no accessible help.
>It is now reported that the national PD diagnosis rate in the United
>States is thought to be one person every nine minutes, or 60,000 new cases
>each year. We are undertreated because despite the enormous caseload,
>maybe 1.5 - 2.0 million Americans, and all the newly recognized cases,
>there seems to be little encouragement for medical students to devote
>their energies to PD. Our elders are undervalued, and all PWP's feel the
>aftereffects. Perhaps public health nurse screening visits could be one
>way to catch undiagnosed cases, and to provide medical care for those
>cases already recognized. I believe radio, magazines, newspapers and TV
>hardly appeal to the Parkinson's Community, which , with caregivers, could
>possibly as much as 4 to 6 million Americans. We need a massive infusion
>of funds for the correct recruitment and training of brilliant minds into
>neurological research. Then I might go to bed without the doomsday feeling
>that my time is near.
>
>At night, in addition to justifiable anxiety, I can wake up unable to roll
>over in bed. I use knotted ropes that are tied to D-clamps that are bolted
>into the studs in my bedroom walls. These at least allow me to elevate
>myself to a sitting position. However, if it is slightly too cool in my
>bedroom, or if a window has been left slightly open, I may have to remain
>in bed to avoid falling. Sometimes, I have to wait until morning to go to
>the bathroom.
>
>DENTAL HEALTH ISSUES
>
>I have lost six molar or premolar teeth in the last two years. Two more
>aremere remnants. The diet we must eat to remain functional is a very high
>carbohydrate, very low protein diet. We need sweet beverages for our
>medicines to be most effective. My saliva dries up at times. I can cry
>,and my tear glands work, but my nose hardly ever is adequately
>lubricated. Because Medicaid provides neither dental nor eye care, I have
>given up on dentistry, except for emergencies. I have unpaid medical and
>dental bills as a result. My dental health is always at risk now, because
>acidic sodas and juices, lowered calcium diets (lack of milk products) and
>saliva-drying medications are a recipe for dental disaster.
>
>INCONSISTENT MEDICAL OPINIONS ABOUT OUR FUTURES
>
>One of the dilemmas PWP's seem to face is diagnoses that change. A male
>friend in Texas and a female in Arizona have each reported on P.I.E.N.
>several different diagnoses for their PD, or PD-like conditions. Since
>1997, I have been to two Rhode Island physicians, and two Massachusetts
>physicians, and ended up with four unmatching recommendations for the
>future! Each carries with it very different hopes and risks. Two
>physicians recommend my staying on the medications I now use. But one is
>not too happy about my use of Tasmar. This is because it is claimed
>thatTasmar can cause death from sudden liver failure. For my protection,
>supposedly, I am to have blood tests for liver enzymes for the rest of my
>life, once every two weeks!! I have looked at the Tasmar reports and I
>disagree. I think the problem lies in the physicians who prescribe doses
>that are too large, like my friend in Arizona whose physician prescribed
>200 milligrams, three times a day.
>My physician in Maine and I are very cautious, and I only take 50 mg 4
>times per day. This amount (200 mg./day) has lengthened my on-times, and
>decreased the off-times. The side-effects seem to be ringing in the ears,
>and drowsiness. I know a PWP in Mississippi who cannot get Tasmar, because
>no accessible doctor will prescribe it for him. The pharmaceutical
>company, Roche, was fined millions of dollars for being part of a global
>price-fixing cartel, by a Canadian court just a week ago. Roche
>manufactures Tasmar..
>
>AN UNCERTAIN OUTLOOK FOR PWP'S
>
>The other two physicians I saw have recommended two radically different
>types of brain surgery for me. One, pallidotomy of the left globus
>pallidus, carries with it a considerable risk of stroke, blindness, or
>even death in some cases. The other, double sub-thalamic nucleus
>stimulation, is not covered by Medicaid. I was told to get bilateral
>surgery at an estimated cost just for the twin surgeries of $48,000.00. I
>have no savings at all. And what about the costs of follow-up visits and
>surgical fine-tunings of the implanted electrodes?] Not only does PD cause
>physiological depression in many of its victims, but it also leads to
>suicide. I know of recent cases in New Hampshire and Ontario. One of our
>most active PWP advocates on the Parkinson's International Exchange
>Network died suddenly of unknown causes in Texas. I have seen two
>wonderful women watch their husbands, in Michigan, and in Oregon, lose
>their corporate jobs after functioning less well at work. There are no
>laws yet to protect the legal
>rights of PWP's. One of our PIEN members is a young widow, and is losing
>control of the right to keep her children at home with her (Virginia). We
>have a long way to go. In two states, we have begun law-making efforts.
>California has one $300,000.00 PWP-friendly housing law, recently passed.
>Maine is the first state to have recognized in a legislative Joint
>Resolution that there is a need to invest money in the training and
>education of all levels of the legal and medical communities, in the
>rights and the needs of PWP's. For both the PWP and his or her care
>providers, uncertainty rules.
>
>Physician-related complications often cause PWP's to remain isolated at
>home, or to be forced into early institutionalization. Many unfortunate
>losses of social contact lead to isolation, and the potential for abuse is
>enormous. I have been the victim of financial abuse, which a friend in
>North Carolina is trying to stop by speaking out. My checks have been
>forged at the local supermarket. I am still battling, two full years
>later, having had to deal with the police, the bank, and the corporate
>offices of the supermarket chain, to be allowed to get a single plastic
>supermarket identification card re-established. Complications ensue when
>our handwriting varies dramatically when in an off-state.
>
>MY PLEA TO THE COMMITTEE: PLEASE FUND THE UDALL LAW FULLY!
>
>When a second opinion, in June, 1989, at Boston University, Massachusetts,
>confirmed my Parkinson's Disease diagnosis, the physician informed me that
>my condition is not curable. He said, "our goal is to mask your symptoms,
>Ivan, as much as possible.." I remember thinking to myself,"incurable?". I
>went into depression and denial for two months, not taking any
>medications. Then, I left an office job, because I simply could not hold a
>pen or pencil after muscle stiffness overtook my hand.
>Since 1989, I have been vocal. Research must be massively increased, to
>discover WHY Parkinson's Disease starts. It could be a post-viral attack
>on the immune system. It could be something toxic in the environment.It
>could be a biochemical error due to a genetic change during life. No one
>knows!
>What could be more compelling than the need to know, so that 4 to 6
>million lives will be spared endless suffering?
>
>COPING AND HOPING
>
>I was asked in a recent, 26-minute television interview, how I manage to
>have hope. I can only answer by saying that my faith in a superior being
>tells me not to give up hope! I know, too, that by speaking out today, and
>representing the worldwide, "grassroots" Parkinson's Community, I open the
>doors a little further for those PWP's who will follow.
>Committee Members, please fund the Udall law fully, so that we PWP's can
>be released from the stranglehold of isolation and depression that is
>destroying millions of American lives at this very moment. Thank you all
>for listening to my story and my plea. I hope you will act with urgency.
>Thank you again, and God bless,
>Ivan M. Suzman
>
Camilla Flintermann, CG for Peter 81/70/55
Oxford, Ohio
http://www.newcountry.nu/pd/members/camilla/one.htm
<[log in to unmask]>
"Ask me about the CARE list for
Caregivers of Parkinsonians ! "
