This is the most helpful article I have seen on how to manage a multitude of
medications. My chart includes coded notes as to my overall well being, such
as stiffness, stability, medication, bowel movements, weight, meal &
medication times...
Thanks for a well prepared presentation.


----- Original Message -----
From: "Ivan M Suzman" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, June 15, 2003 12:38 PM
Subject: preview of PDF News mailbag: Managing Our Medications


>     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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