Summer 2003

The Parkinson’s Mailbag MANAGING OUR MEDICATIONS

Most of us who are fighting Parkinson's disease would agree that this disease can be capricious. Symptoms vary from day to day, even hour to hour, and can change quickly according to the emotional or physical 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 in one instance, normal motion in a second and freezing in a third.

Close monitoring of one's medications is very necessary. Finding a precise pattern of medications that works well is somewhat like winning a bowling match by delivering the ball to score a strike, frame after frame. Here we share tips and advice from PWPs around the country on how you may be able to work with your neurologist to fine-tune the management of your medications.

LEARN THE WAY EACH PILL WORKS Ask yourself the following four questions: - How long does it usually take for the pill to take effect? - 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?

Knowing how consistently you respond to your medications can help you achieve the goal of maximizing your “on-time”.

WORK WITH YOUR PHARMACIST
Marion Lundgren, R.N. of Nova Scotia, now transplanted to Maine, urges us to use the same pharmacist for all of our prescriptions. Using the same pharmacist helps to identify cross-reactions and dangerous combinations of different drugs. This is because your pharmacist will add new medications to your schedule and cross-reference them in the pharmacy computer program. For example, Demerol should probably not be prescribed to a patient on Eldepryl, since adverse reactions, albeit rare, have been reported. In addition, Eldepryl a MAO-b inhibitor should not be taken with anti-depressant drugs.

KNOW AND PRINT YOUR OWN CHART
Making up your own medication chart is a lot like having your horoscope drawn. My chart is displayed prominently on the refrigerator and includes a color drawing of each pill, its name, the strength in milligrams and times to be taken over a 24-hour period. I have taken the time to instruct my caregivers carefully so that they are familiar with my medications and know my schedule of dosing. Barbara Davidson, at the University of Iowa, suggests sharing a copy of your chart with your neurologist or physician, both to save time, and to ensure clarity when you are discussing your medications and their effects on you. Hilary Blue of Virginia sent me a set of guidelines for the PWP who is hospitalized. The most critical point: give the nurses your chart, and firmly insist that they follow it.

TIMING AND REMINDERS
For me, the most important part of my daily routine is to take 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., (Ph: (800) 225-8446) has two products in its catalogue that fascinate me. One is Bruce's “Talking Pill Reminder System”, which sells 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 or irregular intervals can be pre-programmed for each day.

A company called e-pill, LLC worked with Parkinson’s patients to develop two other pill-reminder devices that caught my eye. These are the “Six-Alarm Vibration or Sound Medication Reminder Watch” ($99.95) and the “Multi-Alarm Pill Box Timer” ($49.95). View their range of devices at www.medclock.com. The six-alarm vibrating watch, which is disguised as a handsome sports-watch, discreetly allows you to be out and about, and reminds you that it is time for your medications. The alarm can be set to either vibrate or to produce a sound.

The “Multi-Alarm Pill Box Timer”, tested by a panel of Parkinson’s patients, has a built-in pillbox and has switches that slide when programming it. These switches slide making it easier to program than using the buttons found on other models. Up to thirty-six reminders can be programmed.

DISPENSING YOUR PILLS FOR THE WEEK
Bruce, Inc. 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 can be created when multiple pill bottles juggle and knock about on a shelf, or a table, or in a purse or handbag.

I carry my entire week's pills, 21 per day, in a 3" diameter pill carrier. 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 preferable, for me at least, to elongated pillboxes that could easily pop out of my coat or shirt pocket. My current pillbox cost just $3.95 at a local drugstore.

That is all the room we have this month. Next issue, we’ll be reviewing useful suggestions for clothing and dressing; as always, your comments and suggestions will be welcome.

Quick Quiz
Q: Why is laughter often considered the best medicine of all?

Send your answer (20 word or less) c/o PDF or to info@pdf.org. The best answer will be printed in the next issue and the winner will receive a “Six-Alarm Vibration or Sound Medication Reminder Watch” worth $99.95 generously donated by e-pill, LLC.

The Parkinson’s ‘Mailbag’, is a compilation of tips and practical suggestions from people with Parkinson’s and is written by Ivan Suzman.