To: Health care professionals (to be)
From: The Parkinson Information Exchange Network
Subject: What we would like our health care professionals to know
The Parkinson Information Exchange Network (PIEN) is an open, unmoderated
internet discussion list based at the University of Toronto. It was
started on November 8, 1993 by Judy Norris, University of Toronto, and
me, Barbara Patterson, in response to an "unmet need" for this service.
There are now more than 1600 members from more than thirty- six
countries. When I was asked to take part in a lecture about Parkinson's
to about 150 nursing / health care students, I asked the members of the
PIEN for their opinion(s) on what they would like our health care
professionals of the near future to know about living with pd....as a
person with Parkinson's or as a caregiver. We looked at it as an
opportunity for us, the people on whom Parkinson's has the most impact,
to inform and educate those who will, perhaps, deal with Parkinson's in
the course of their professional lives. Below is a summary of the
responses to my request.
1. LISTEN. Really listen to the person with Parkinson's. Each one
of us is living with Parkinson's from the time we get up in the morning
until we go to bed at night and during the night when our sleep is
disturbed by, to list only a few, muscle cramps, inability to turn over
in bed and the medications we take to control Parkinson's. We may
present an unexpressive face, a soft voice and appear uninterested but
those are just symptoms of Parkinson's. Behind those symptoms, we are
the same as you are. We are quite capable of understanding what you are
saying. Do not look past us and address your questions to others around
us. It may take us a longer time to put our words together to answer
you, but we will answer. We and our caregivers may be better informed
about many aspects of Parkinson's than some medical personnel, and our
suggestions and concerns should be taken seriously and respected.
2. LISTEN. Really listen to our caregivers. For those of us with
more advanced Parkinson's, our day-in-day-out caregivers are the best
source of information about us. Many of us with Parkinson's put our best
foot forward during doctor's visits so our doctors see the better side of
our lives unless all three of us talk about some of the problems.
3. SYMPTOMS. Every person with Parkinson's is different with
different symptoms, different needs and different combinations of
medications. There really isn't a simple textbook model for nursing
students to follow. Some have tremors and others do not. Some have
dementia as well as movement disorders and others do not. Some are very
depressed, others are not. Some respond to medications well, others do
not. Some have their Parkinson's complicated by other medical problems.
Some eat well and others may require a PEG to prevent aspiration and
pneumonia. Some cannot speak, others have normal voices. There often is a
frequent urgent need to urinate, with little production resulting. In
other words, the person with Parkinson's can be a real problem for busy
nursing staff. Also, our ability to function can vary widely from day to
day and from hour to hour. Parkinson's does not progress on a smooth
slope, but worsens in steps (big and small). Parkinson's does not kill;
it just slowly wears away routine functions--walking, eating, etc.
4. MEDICATION:
A list of some of the medications used in the treatment of Parkinson's is
included in the Glossary' which is included with these pages. The gold
standard' drug for the treatment of Parkinson's is Sinemet: Trade name
for the antiparkinson drug that is a mixture of levodopa and carbidopa.
Another drug, which is usually among the first to be prescribed after
diagnosis is Deprenyl: (Eldepryl, Selegiline, Jumex) A drug that slows
the breakdown of chemicals like dopamine by inhibiting the action of
certain enzymes. It increases effects of dopamine in the brain.
Eventually, along with these two, there could be a variety of agonists,
anticholinergics and medications for depression included in the treatment
regimen.
5. MEDICATION/TIMING. People with Parkinson's typically take a lot
of different medications with rather complex timing problems that need to
be observed on an individual basis. It does not work well with the
pattern of medication dispensing where every patient's medications are
dispensed, then wheeled around for delivery on a set schedule. People
with Parkinson's do not do well when the legal window for dispensing
medication may be an hour on either side of the time set. It is vitally
important that medications are given "on time" following the patient's
home routine--not hospital routine. Even an hour variation in timing can
cause side effects of administered drugs which are often as bad or worse
than the symptoms themselves. The timing of medications and meals can
make a real difference to our well-being. Health care workers should be
aware that episodes of dementia or hallucinations may be caused by
medication overdose or by medication interaction problems, rather than an
organic problem, and should notify the neurologist.
6. EXERCISE. Daily exercise is of primary importance to maintain
the best possible level of movement for those of us with Parkinson's.
One method many of us use is Tai Chi which can be adapted to take into
account the poor balance and muscle rigidity Parkinson's brings. Even a
daily routine of stretching is of benefit.
7. THE FUTURE: NEW MEDICATIONS; NEW SURGERIES; NEW FUNDING: There
are many new medications just released or about to be released to aid in
the treatment of Parkinson's. Some of these are very promising, but, of
course, bring along with them their own brand of side- effects. New
surgeries, or new ways of performing and perfecting old surgeries are
also being developed. Just this past week the Morris Udall Bill was
signed into law in the United States. This bill earmarks $100,000,000
for the year 1998 for research into Parkinson's which should help in the
development of these drugs and surgeries....which means that the future
for those of us with Parkinson's looks a lot brighter.
Parkinson's Information Exchange Network
Barbara Patterson ([log in to unmask]),
Martha Rohrer ([log in to unmask]),
Becky Hunt ([log in to unmask]),
Anne Rutherford ([log in to unmask]), Barbara Smith ([log in to unmask])
Bruce&Helen McCallum ([log in to unmask]), Jan Potter
([log in to unmask]),
Nita Andres ([log in to unmask])
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Barbara Patterson [log in to unmask]
HSC 2J22 905-525-9140, ext. 22403
School of Nursing
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