I'm forwarding Ivan's 3-part testimony----Camilla Flintermann
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>The Daily Challenges of Young-Onset
>Parkinson's Disease:
>
>Testimony submitted to the United States Senate Appropriations Sub-
>Committee on Health, Human Services and Labor:    Hearing on Parkinson's
>Disease.    September, 28, 1999
>by Ivan M. Suzman, Portland, Maine
>
>TABLE OF CONTENTS:
>
>1.     Acknowledgments
>1.     Introducing Myself
>2.     Early Career
>3.     Y.O.P.D. Appears
>4.     Daily Routine
>4.     Personal Care Attendant Help
>5.     Problems With Protein and Dehydration
>5.     Bladder and Bowel
>6.     Hypothermia
>6.     Mobility
>7.     Medications Cause Emergencies
>8.     Education Needed
>9.     Impoverishment
>9.     Underpaid Medical Attendants and Fluctuating Health
>10.    A Whole Night's Work For Only $9!!
>11.    No Clinics in Maine, New Hampshire Or Vermont?
>12.    Dental Health Issues
>12.    Inconsistent Medical Opinions
>13.    An Uncertain Outlook for PWP's
>14.    My Plea To The Committee: Please Fund the Udall Law Fully!
>15.    Coping and Hoping
>                                                                    1
>----------------------------------------------------------------------
>
>THE DAILY CHALLENGES OF YOUNG-ONSET PARKINSON'S DISEASE
>by Ivan M. Suzman
>
>CHAIRMAN SPECTER, MINORITY CHAIRMAN HARKIN, MEMBERS OF THE COMMITTEE,
>DISTINGUISHED GUESTS AND PARKINSON'S COMMUNITY:
>
>First, my special thanks go to Senator Olympia Snowe of my adopted home
>state of Maine, and to her staff, for providing the contacts with the
>staff of Senator Specter of Pennsylvania that have made it possible for my
>testimony to be included today with those of Dr. Fishbach, Dr. Langston,
>Mr. Fox, Ms. Samuelson and Mr. Cordy.  My thanks also are extended to
>Senator Specter, for allowing my  testimony to be part of the record today.
>
>INTRODUCING MYSELF
>My name is Ivan Suzman. I am now 49. I have suffered  symptoms of Young
>Onset Parkinson's Disease (YOPD) since 1986. I am now in my 14th year of
>YOPD. It is wreaking havoc upon me.
>I have become an advocate for those suffering from all forms of
>Parkinson's Disease (PD), including children, young adults and older men
>and women. I founded the Greater Portland, Maine Parkinson's Support Group
>in 1992. From 1996 through now, I have served all six of Maine's PD
>support groups as
>their Legislative Liaison. I have authored large sections of Maine's 1997,
>1998 and 1999 Governor's Resolutions for Parkinson's Awareness Month
>(April), and its 1998 and 1999 Joint House - Senate
>Resolutions Recognizing Parkinson's Awareness Month.
>
>EARLY CAREER
>
>By 1986, when my YOPD symptoms made their first appearance, I had ten
>years of scholarly life behind me. I had been a Lecturer in Human Anatomy
>in the Medical School in Johannesburg, South Africa. I had spent six years
>working in Africa's great museums on thrilling, three-million-year-old,
>pre-human and human skeletal remains from Kenya, Ethiopia, Tanzania and
>South Africa. I had been an Assistant Professor of Anatomy and
>Anthropology for  three years in Minneapolis, at the University of
>Minnesota Medical School , spent one year as an Assistant Professor of
>Anatomy  at the University of New England Medical School in Maine, and
>gave advanced anthropology and biology courses as a Visiting Lecturer in
>the faculty at Bowdoin College in Maine.  I was publishing, and  at the
>beginnings of a promising career as a researching scientist, teacher and
>palaeoanthropologist. I was working closely with South African exiles in
>the United States, and developed an unrivaled collection of films, now
>housed at Bowdoin College, which documents the resistance movement against
>South Africa's  apartheid government, from 1956 through 1992. I was
>honored as a 1991 Maine Martin Luther King, Jr. Holiday Committee Award
>recipient, in  recognition of my educational and compassionate work. I had
>also worked with the famous Leakey family of Kenya and Tanzania, in
>Africa. My world was the exciting world of fossils, discoveries, and
>research plans.
>
>YOPD APPEARS
>
>Since 1986, a time bomb has been ticking. It is my YOPD, claimed to be
>incurable, and of unknown origin.  It  is likely to cause me great
>deterioration in the very near future. YOPD is so powerful that I often
>feel as if I am a marionette, whose strings are being pulled by an
>invisible, perverse choreographer.
>By March 21, 1989, at the age of 39, after three years of accumulating
>symptoms, a near- drowning, and twenty-one visits to physicians, surgeons,
>physical therapists, and other health care professionals, I received the
>devastating diagnosis that I had Parkinson's Disease.
>
>My early,  unidentified symptoms were intractably stiff shoulder blade
>muscles, foot cramps, toe curls, frozen wrist and hand joints, and an arm
>that hung when I walked. These were all warning signs. Strangely, I had
>virtually no tremor. When I started losing control of pens and pencils,
>and had to quit an evening office job because of unbearable pain in my
>right arm, in 1989, and my left leg and foot seemed to be strangely weak
>and kept dragging, I decided to see a local neurologist, who diagnosed me
>with "Parkinson's Disease-30 years too soon."
>
>DAILY ROUTINE
>
>I take four medications in an attempt to reverse paralysis. Without these
>medications, I cannot move. I am unsafe if unattended. My medications
>must be taken in varying combinations, at 7:15 AM, 9:30 AM, 12:30 PM, 3:15
>PM, 6:00 PM, 9:15 PM, 12:15 AM and 3:45 AM. I never know with any
>certainty how well each of 28 pills, or partial pills will work. We
>"PWP's," persons living with Parkinson's Disease, all experience,
>eventually, this daily uncertainty of our medications. They may or may not
>prevent the paralysis, tremors, muscle shortening and stiffness, and
>various combinations of internal problems.
>We call these failures our "off' periods. My day usually begins with one,
>which may last anywhere from thirty minutes to three hours. Some days, I
>struggle to regain movement, during up to six hours of painful immobility.
>If I have been perspiring during either the previous day or night, often a
>side-effect of taking 1100 milligrams of a combination drug, Sinemet,
>which promotes motion, while lessening nausea, someone will have to help
>me get cleaned up. This means extra laundry, bathing and time lost.
>
>PERSONAL CARE ATTENDANT HELP
>
>After getting my juice and taking my early-morning medicines, I need help
>to unlock toes that have curled under my feet. I have  to be at first
>covered to prevent sudden cold, or worse, hypothermia, and then assisted
>with many aspects of showering, or bathing,  and getting dressed. To
>regain heat, I may need an electric space heater, and one or more
>microwaved, flexible heating pads, made from double-layered socks filled
>with uncooked rice. Sometimes, the medicines hit me so hard that either I
>sway like the proverbial drunken sailor on a rainy pier, or they do not
>work, and I am stuck in a low-dopamine state of exhausting muscle pain,
>with knee and foot joints that arch as if to break my bones, and which
>will not straighten out and loosen up. The personal care worker is often
>busy with no let-up for three hours, just to get me to the point of eating
>breakfast.
>
>PROBLEMS WITH PROTEIN AND DEHYDRATION
>
>Breakfast is an enormous challenge. It is thought that proteins in our
>foods block "gates" that the medications must traverse, within the
>microscopic vascular network at the blood-brain barrier. This blockage,
>just beneath the surface of the skull, under the membranous, skin-like
>coverings over the human brain, can cause me to be both paralyzed and to
>have painful stiffness. I have to be extremely careful to avoid protein
>and fat. Milk on cereal can be dangerous. To use an extra teaspoonful of
>cream in coffee or tea or hot chocolate is to invite immobility within
>twenty minutes. Eggs and cheese
>portions have to be minimized to be safer breakfast choices. We PWP's have
>to learn how to eat bran, whole grain breads, fruit and juices. I must
>drink fluids all day, even when working around the house, because my
>medicines dehydrate me. I carry a large, covered plastic drinking mug,
>with a long, bent straw, whenever I leave home. During off-periods, my
>hands are nearly useless, and will not hold a glass or cup.
>
>BLADDER AND BOWEL
>
>Going to the bathroom is an ordeal at times. To empty my bladder may not
>even be possible. Sometimes, I have to wait until I bathe, and that can be
>hours, so that hot water relaxes the muscles that often refuse to let my
>waters be emptied. Sexual function is also extremely difficult. Medications
>can cause urinary incontinence or uncontrollable bowels, in PWP's, or the
>opposite, severe constipation. Obstructed bowels are common in PWP's, and
>cause fatalities
>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
>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
>