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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. > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn