John Carter
Forum Replies Created
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Yeah, some days are worse than others; on really bad days, focus on anything and everything you can do today to make tomorrow better and then do at least one thing today to get ready for a better day tomorrow.
And after you do one thing, I bet you’ll find you can do two things. Keep moving; your not alone. When your having a bad day you can be damn sure someone, somewhere is having a tougher day. -
I was diagnosed with PD in early 2018 and began taking carbidopa levodopa. For the first 12 months or so, I wasn’t sure if it was helping or not. And then I begin to notice something strange (to me a at least). About an hour or so after taking carbidopa levodopa, I become somewhat disoriented with slurred speech; this seems to last up to, two hours. And about three hours after taking the dosage, I get back to “normal”. I have found that if I take a nap for about an hour after I take the pills, I get back to normal sooner (i.e., after about two hours). Also, if I get on my stationary bike for about 30 minutes as soon as I take the pills, I can get back to normal sooner. What is puzzling is why would the carbidopa levodopa cause these symptoms that are more associated with the need to take more carbidopa levodopa? It is as if the pills cause me to an
“off” period before I can get back “on”. -
Ian, it is curious about the commonality of the left-hand and the early motor symptoms; I am right handed by the way. I’m taking carbidopa levodopa. I don’t seem to derive a significant benefit from it, but I know when I don’t take it, I tend to get cramps in my legs, particularly in the evening. One Motor symptom that was pretty obvious before I was diagnosed with PD was that I noticed a definite weakness in my knees when I would start writing my bike in the morning.
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Ian, I was diagnosed with PD in 2017 at the age of 70. Of course now I realize I had PD motor symptoms much earlier. As I recall I had some type of resting tremor with my left hand; it was most noticeable when I awakened in the morning and then it would diminish and go away in an hour or so. I still have it, but the morning tremor is a little worse now, but still goes away in an hour or so (as soon as I become fairly active in the am). I don’t know if this helps, but please continue to document your symptoms as they will probably be useful to others in the future; hang in their fellow Parky…
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I’m 74 and have had PD related balance issues for the past couple of years. And I have fallen several times; fortunately no hospitalization was required. So, I try to focus on good posture and avoid the forward leaning stoop. When walking, I consciously try to keep a slow pace and make sure I put my heels down first. When I get out of sync, I stop and do a reset. This includes resetting my posture, getting my head and neck up and starting out with a consciously large step forward.
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April Sargent is an experience exercise therapist who has been working with individuals with PD for years ( [email protected] ). April hosts a Zoom class 3 times a week from Santa Maria, California. It is an excellent class I recommend it highly.
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Jeanne, what I have been doing is to take my normal dosage at about 6 o’clock a.m.(2 CL pills). I then go back to sleep for about two hours. When I wake up, I feel pretty good; not wobbly. An ten o’clock, I take one tablet and do this every two hours until about 4 o’clock p.m. I’ve got a good doctor and he is okay with this approach. I try to maximize the amount of time between meals and taking CL using this schedule, but I don’t worry about the absorption. There are a lot of conflicting opinions on this and the most recent data I’ve seen suggests you do not have to worry about it. When I take my CL (it is an immediate release), I crunch tablets into a fine solution and then I swallow them with about 4-8 ounces of water. My doctor also suggested that I try Rytary as a substitute for CL. I have not done this yet. Well this strategy helps to minimize the wobbly feeling I get when I take two pills, it doesn’t always work out. When this happens, I skip a dosage and then get on my stationary bike for about 20 minutes or so. This seems to get me back on schedule (one pill every two hours). I am aware that the CL is benefiting me, particularly the slurring of my speech improves rather dramatically, but it certainly doesn’t do anything for my balance. On Some days, nothing seems to work, but the next day ‘ll have a good day?? Since there is so much variability in a Parky’s response to the different kinds of medication, I personally do not have any issues with a little experimenting.
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Hello Ian, I began noticing weakness in my knees two to three years before I was diagnosed with PD. When I got on my mountain bike and began to ride, usually with my wife, I would feel a distinct weakness under my patella on both knees. The faster I would pedal, the more noticeable the weakness would become. I wasn’t too worried about it, because after my knees got warmed up I was fine meaning I did not feel any weakness; it disappeared and I felt strong on the bike. Also, after I was diagnosed with PD, I was taking spin classes with my wife and I began to notice something else. My legs were getting progressively weaker meaning I could not maintain the RPMs I was used to maintaining. Also I could not achieve the maximum RPMs as I had obtained one to two weeks earlier. I suspect this is a common early motor symptom with PD (if you’re a bike rider). I say this because as part of my diagnosis for PD, I had a brain CAT scan. And after getting the scan, the radiologist technician ask me if I ever experienced weakness in my knees. I think he asked me that based on the type of prescription for the scan; he did not know anything about my history riding bikes. The scan turned out to be normal; nothing to suggest I had PD.