-----------------------------------------------------------------------
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
12
-----------------------------------------------------------------------
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 are
mere 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.
13
-----------------------------------------------------------------------
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 that
Tasmar 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, on PIEN,
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
14
-----------------------------------------------------------------------
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,
15
-----------------------------------------------------------------------
"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
16
-----------------------------------------------------------------------
