For those who care for someone with Parkinson's disease
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I'll try to explain this clearly, but it may get complicated. ... Mom is approaching "zero" on a lorazepam taper that has been ongoing for 2-3 years. She's on less than a quarter of a mg a day. I mix it with water and reduce it slowly, as withdrawals can be terrible with ativan/lorazepam, and she is very sensitive to withdrawals. ... Anyway, as we get closer to zero, it seems to me that her sinemet is making her run around the house for 4-6 hours from morning to early afternoon. (My guess is the tranquilizing effect of the lorazepam may have required her to take more sinemet previously?) I am off for two weeks for Christmas break, so the last couple of days I thought we would try eliminating one of her two extended release sinemet she takes over night. That helped with the hours of running around the house during the day, but she felt awful first thing in the morning, complained more of pain throughout the day, and seemed to slow down more than I really wanted. ... So last night I thought we would try taking her extended release at 10pm and 3AM instead of midnight and 3am, hoping that spreading them out would help. (She has generally been staying up until 10 or 11 anyway...something she NEVER did when on higher doses of lorazepam.) ... She definitely felt better when waking up. But now it is 1pm and she is running around the house again (has been for at least a couple hours). Her 10am sinemet should be wearing off by now, but it doesn't seem it has. I'm going to wait until 1:15, and move all the other doses ahead 15 minutes today. ... She takes amantadine at 7am and 7pm, sinemet 25/250 every 3 hours from 7am (5 doses/day), entacapone every 3 hours from 7am (5 doses/day), and sinemet CR 50/200 twice over night. ... My next idea is to try taking one over night at 3AM. Last time we tried one over night it was at midnight, and by 7am she was complaining. Another idea I had was to eliminate ONE entacapone at 7am. I'm not sure what to do, but often she has some really good hours after 4-5pm, sometimes so you would not even know she had Parkinson's. I feel like we are close to a "sweet spot" on her medications, if I could only figure out how to get there. |
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| Greyeyed, I hope your Mom's neurologist is on board with these changes and adjustments you are experimenting with. I say this because not only should we run changes by the Doctor but so it is noted in Her records. Heaven forbid anything happen and She ends up with even a short hospital the hospital staff will dispense the medication amount noted by the Doctor in Her record and not changes made at home. We always should keep the Doctor in the loop of what we are doing. Take care |
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I’m not sure any neuro Bens ever had would know exactly what dosage and rate he was taking at any given time. They’ve always encouraged us to experiment to find what works best. She has a general idea, because we check in every three months, but because PD is so individual the therapies have to be too. As far as a hospital stay, that’s part of what makes we caregivers important. Or for folks who live alone, a good log of what they’re taking currently. Records always lag behind reality. |
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| It took me several years to figure out that the neuro doesn't really know what will work best. They sometimes won't literally tell you to experiment because they don't trust most people to be careful, or cognizant of what they are doing. As my mom's main caregiver for nearly 10 years now, I now know I am as much an expert as anyone else in the loop of her care (very often more so). The neuro has been very impressed with the results of my care, and her last neuro (whom I didn't care for) told her I was the only reason she made it through a bad patch (apparently realizing he made a couple of mistakes). The only times she has ended up in the hospital over the past 10 years is when doctors changed her meds in ways I wasn't comfortable with--never the other way around--when they assured me it would be fine...when it wasn't. Moreover, our current neuro expects us to make changes if needed, and asks us about them each time we have an appointment. At the last appointment he was beaming. (Sorry to be defensive, but I am extremely proud of my care for her, and I know I am the only reason she wasn't placed in a nursing home years ago. I easily have 10,000 hours of care giving for her specifically, and probably just as many reading on her meds, interactions, side effects, etc.) |