Hello friends,
Here is the manuscript of my
next Parkinson's Mailbag for
the PDF....Hope it helps.
Ivan Suzman
M A N A G I N G O U R M E D I C A T I
O N S
EVERY DAY IS DIFFERENT
I think that most of us who are fighting Parkinson's Disease would
agree that this disease
is by nature somewhat capricious. The first symptoms a patient
experiences are, commonly, not easily identifiable as Parkinsonian.
They also tend to vary from day to day, and change quickly according to
the emotional condition of the patient.. These fluctuations continue
indefinitely, making the administration of medications very challenging.
The same amount of medication in three consecutive doses may cause
dyskinesia, or normal motion, or can be insufficient, and leave the
patient stuck in a chair, unable to stand up.
As a result, close monitoring of one's medications, which will vary
tremendously in effectiveness even from one part of a day to a different
part of the same day, is very necessary.
Finding a precise pattern of medications that works well is somewhat like
mastering an overhead volley of a tennis ball, which you try to deliver
time after time to your opponent's baseline at the back of his court.
LEARN THE WAY EACH PILL WORKS
It is very helpful to know four characteristics of each medication
you take. These are:
- how long should you wait before expecting to feel the effects
of a pill?
- how long will a pill's positive effects last before another
dose is needed ?
- what do you feel happening to your body and mind when a pill
is wearing off?
- is your pill best taken between meals, on an empty stomach, or
with food ?
OUR OPTIONS ARE INCREASING
. When I was finally diagnosed, in 1989, there were just five
medications to try. These were Sinemet, including many variants, like the
CR formula and generic equivalents, Parlodel (bromocriptine),
Permax(pergalide), Amantadine, and Eldepryl, Now, there are agonists
like Mirapex and Requip, COMT-inhibitors Tasmar and Comtan, GDNF,
co-enzymes like Q-10, Vitamins, supplements, and naturopathic and
homeopathic remedies to consider.
I hope that readers will find the suggestions below to be helpful.
As you will gain mobility, you will experience an improved outlook on
life, as well..
SAMPLING THE MAILBAG,,,,
WORK WITH YOUR PHARMACIST
Marion Lundgren of Nova Scotia, now transplanted to Maine, urges us
to use the same
pharmacist for all of our prescriptions. Echoing her is Lillian Scenna ,
the Parkinson's social worker at Maine Medical Center, who said that your
pharmacist is more likely to know about
the cross-reactions and dangerous combinations of different drugs than
your physician, who tends
to know more about the specialized drugs of his or her area of practice.
For example. Demerol can never be given if a patient is on Eldepryl, as
this combination can lead to a heart attack..
Eldepryl is a good example. It is an MAO-b inhibitor. This means
no Sucrets, no Robitussin DM, and no MSG for these patients. A long list
of dietary rules also accompanies Eldepryl.
Food additives can be very dangerous. L-dopa overdose is no laughing
matter. Hot, spicy corn chips and potato chips, and some common chewing
gums, like Trident and Dentine sugarless, carry warnings for
phenoketinuric patients; I wonder about any implications for PWP's., as
these foods are laced with man-made phenylalanine, the basic ingredient
of Sinemet.
PROS AND CONS OF GENERIC SUBSTITUTES
Nina Brown of Texas suggests talking with your pharmacist about
free or reduced cost drug
programs. She suggests asking for generic drugs to save money.. She
mentioned contacting Pfizer and other companies directly, and asking
about their programs for people on fixed incomes.
.
I would add, try a generic if your physician is agreeable, but do
not expect the consistency that
you get with brand-name drugs. For me, generic carbidopa-levodopa 25/100,
the Teva product thought to be equivalent to Sinemet 25/`100, was more
comfortable to swallow, and gentler on my stomach. The Teva pill tended
to crumble more quickly, and leave lemon-colored dust behind.
In my trials, it was weaker. I had to add an extra quarter of a tablet
to overcome my PD-related paralysis; this extra L-dopa caused me to sweat
rapidly and uncomfortably. I decided that Dupont's. brand-name Sinemet
is preferable, at least for me.
KNOW AND PRINT YOUR OWN CHART
Making up your own chart is almost like having your horoscope drawn..
My chart is displayed
prominently on my refrigerator. I have taken the time to instruct my
caregivers carefully. It is important to me that they. know my schedule
of dosing. Barbara Davidson, at the University of Iowa, suggests giving
your neurologist or physician a copy of your chart, both to save time and
to have clarity when discussing your medications and their effects on
you..
TAKE YOUR CHART TO THE HOSPITAL
Hilary Blue of Virginia sent me a long set of guidelines for the PWP
who is hospitalized. The most critical decision to be made is to continue
your usual PD medications, by giving the nurses your chart, and firmly
insisting that they follow it. They are not going to help you if they
change things around.
TIMING AND REMINDERS
Nothing gives me more flexibility than taking my pills ON TIME Like
other mere mortals, I do
forget when I am distracted. A Waltham, Massachusetts medical
manufacturer and mail-order
company , Bruce, Inc., has two products in its catalogue that fascinate
me. One is Bruce's
Talking Pill Reminder System, selling for $29.95. It is designed to
either beep, flash or speak to you with a talking , programmable voice,
that it is time to take your medicines. Up to four reminders, at regular
intervals, or at whatever times, can be pre-programmed.
I know that there are alarm wristwatches that discretely allow you to
be out and about, and remind you that is your medication time. I have
not tried any, and would be interested in readers'
comments.
DISPENSING YOUR PILLS FOR THE WEEK
Bruce, Inc.also offers an "Extra-Large Pill Dispenser" for $7.95.
It has six compartments, self-stick labels, and holds about 20 small
capsules or pills in each compartment The idea is to
reduce the potential confusion that could come from handling multiple
pill bottles on a shelf, table or loosely knocking about inside your
purse or handbag.
I carry my entire week's pills, 21 per day, in a 3" diameter pill
container. It is made of clear, blue plastic, with seven compartments,
each marked with a letter of the alphabet signifying the day
of the week. It is donut-shaped and fits in my pocket. It is suitable
for my busy lifestyle,
and far preferable to elongated pillboxes that would pop out of my coat
or shirt pocket easily.
My current pillbox cost just $3.95 at a local Rite Aid drugstore.
That is all the room we have this month. Thank you, contest
winners Thea and Gordon
Seese of Mt. Shasta , California, and all of you who answered the quiz
about the ancient Greek orator, Demosthenes..
Your comments, dear Mailbag readers are always welcome. Until next
issue, best wishes from your Mailbag editor and fellow patient, Ivan
Suzman of Portland, Maine.
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