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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
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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 go to Clare Wilson, New
Mexico, Hilary Blue, Virginia, Bob Armentrout, Texas and Janet Paterson,
Ontario, four "cyber- siblings" from the Parknson's International Exchange
List, our on-line Community, for editing help. My thanks also are extended
to Kelly Abbett of the Parkinson's Action Network for readying Parkinson's
activists for this Hearing, and 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
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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.
I traveled to the U.S. Capitol in June, 1998, for the Parkinson's Action
Network Forum. I held meetings with Senator Snowe, Senator Reed of Rhode
Island, the staff of Senator Collins of Maine, and Representative Baldacci
of Maine. I am the initial contact person in Maine for the Parkinson's
Action Network.
I am an active participant in a diverse cyber-community, P.I.E.N., the 1800
member Parkinson's International Exchange Network, an e-mail forum with
members from 36 countries. In 1999, I had the tremendous honor of bringing
Archbishop Desmond Tutu into contact with the many persons who, like me,
share their woes and their hopes through PIEN.
I am from the third American generation of a family from Providence, Rhode
Island, where I was born on November 25, 1949. I have two married brothers,
three nieces, godparents and cousins throughout Rhode Island, and in nearby
Massachusetts. I went from high school in Providence to Dartmouth College
in New Hampshire to Ph.D studies in Africa.
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
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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
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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
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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
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