Once Parkinson’s disease (PD) has to progressed to a certain point, PD patients and their caregivers often find that managing and balancing PD medications becomes a difficult task. It is sort of like trying to hit a moving target – because as the disease progresses, the combination and dosage of PD medication (sometimes called a “cocktail”) needs to be adjusted in-parallel. Just about the time you think you have the PD medication figured out, the disease has progressed or symptoms have changed.
A member of our support group sent me some email on this topic, and I thought that their comments regarding how they manage taking PD medications might be of use for others with “similar” situations. I am "not" suggesting that everyone should use this method of managing PD medications, but their solution is something to think about. With their permission I am sharing this excerpt from their email.
Because they don’t feel comfortable using their real names, I have changed their names to respect their privacy.
Beginning of email extract…
“I have been setting up Jack's medicines for him. He was reluctant, but is very agreeable to it now. In the past I have only done this when he has been in his dark holes, or having his surgeries. A couple of weeks ago, it just seemed everything was not as good as I thought it should be and we were having problems between us because of it. Overall, everything has been much smoother now. I set them up for the week, he checks them to be sure I am right, then he is in charge of what time he wants to take each dose and if I have concerns I glance at his case to see if he is on track. (Before, I never knew for sure what was in the case to be sure of what I was observing) Yes, he has found some errors on my part a couple of times! I really feel like he may have dropped pills in the wrong compartment resulting in taking too much at one dose and not enough at another! I have found pills on the floor and never knew if he was aware it dropped or thought it was in his case. This way, we both know what is in the case is accurate and when I see side effects, I can better determine if it may be medicine related or otherwise. Because of his coordination, he was setting up his for only one day at a time and of course he was more apt to make a mistake because of rushing. The first couple of days, I hid the stash so I would know he wasn't getting extra. He now knows where I keep the stash but has agreed to let me know if he takes anything extra. Since the stash is not in his sight all day, he is less tempted to grab an extra Sinemet and has done a better job taking his doses on a regular basis. Whenever he would take an extra Sinemet, his body would forget it was time for his regular dose... thus everything was off kilter! The main problem is since I wouldn't know exactly what he was taking I was misinterpreting the side effects. For now, our whole life has been more smoother! When I see the Dyskinesia or freezing, I am better able to judge where he is in his cycle of doses to know whether there is real concern or not. Many times over the years, I would only find out a few days after when he had decided to try living without a certain drug or adding extra... and that was after stressing why his medicine was no longer working properly... only to find out he had been making adjustments without my knowledge! I try to remind him that only he knows how he feels on the inside, while I can only judge how he looks on the outside and it takes both of us to fine tune his medicine. As a result, we have actually cut back on his Ativan... but we both have been on board (along with the doctor) to know when enough is enough!”
End of email extract…
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