Forum Replies Created
January 18, 2021 at 10:19 pm #20101
I haven’t experienced more than minor dyskinesia yet, but I expect that will change, so I’m excited to see a drug being tested to treat it. Ketamine is an interesting drug, and I’m surprised at how many uses it’s found. I first became aware of it as a veterinary anesthetic, usually given along with other drugs when used for that purpose. Then, a few years ago, I heard a news story about it being tested as a treatment for PTSD. Now, dyskinesia. Great. It’s also relatively inexpensive. You could find some negative stories about it if you looked, but those are the result of misuse, so that doesn’t concern me. The only negative I see is that it’s given by injection, and I don’t think it’s long-lasting in its usual form. However, if it seems useful, maybe they will be able to formulate a slow-release version or deliver it through a pump, like insulin. It would be nice to have it as a treatment option.
October 9, 2020 at 8:40 pm #19516
Hi Rob. Thanks for your response. I saw that you’ve mentioned the body odor issue several times. I’m surprised to hear about a lack of body odor indicating a problem. I thought people with Parkinson’s had an unusual body odor that some people can detect and that dogs have been trained to detect. Is the body odor you’re referring to similar to that of the butyric acid pills?
October 2, 2020 at 7:49 pm #19488
I’m interested in your questions and comments about butyric acid. Where does one get their SCFA levels tested? Also, I’m aware of companies performing microbiome sequencing, but I would be interested to know who you used if you’ve had that done.
September 25, 2020 at 8:21 am #19438
In my message to Robert, I mentioned that I take propranolol (also called Inderal) to treat the essential tremor (ET) that I have had far longer than I’ve had PD. (It’s not uncommon to have both.) Propranolol is a beta blocker, so yes I do have experience with it. As Robert mentioned, it can cause problems for people with PD since many of us already have issues with orthostatic hypotension. In fact, after I was diagnosed with PD, I tried dropping or cutting back on propranolol, thinking that my tremor might have more to do with my PD than my ET, but I found that my ET tremor came back.
Although she certainly wasn’t prescribing it, a nurse practitioner I used to work with told me that alcohol also helped for ET. In truth, I never noticed that it did for me. I could imagine that if it relieves anxiety, it could also help with a PD tremor. However, if you have any question as to whether your tremor is from PD or ET or both, this site seems to describe the differences well:
<h2>Difference in frequency and magnitude of tremor</h2>
The tremor seen in ET is generally of a higher frequency (more repetitions over a length of time), although the frequency can decrease over time. In PD, the frequency of tremor is slower. The magnitude, or strength, of the tremor also differs: in PD the magnitude of tremor is high, whereas the tremor in ET can be variable throughout the day, ranging from very low to high magnitude.<sup>2,3
(I would replace the word “magnitude” with “amplitude,” but I think we’re saying the same thing.)
<h2>Difference in sides of the body affected</h2>
The tremor in PD usually starts on one side of the body and may develop on the other side as the disease progresses. In ET, the tremor usually affects both sides from the beginning of the condition.<sup>2</sup>
<h2>Differences in what improves tremor</h2>
People with PD who experience tremor usually experience improvement in their symptoms with levodopa therapy. People with ET may get relief from their tremor with primidone and propranolol. Also, the tremor from ET can be improved with alcohol consumption, whereas alcohol consumption has no effect on a tremor from PD.<sup>2</sup>
Of course, this is of no help to Robert, who asked the question to begin with. I’m sorry I can’t help, but I thought this might be of use to someone else if they come across this discussion at a later date.
September 23, 2020 at 11:39 pm #19426
Can I take it that you know the tremor is from PD? The only reason I ask is because I have essential tremor in addition to PD. The first responds to propranolol and the second to C/L. They’re very different in character. The ET tremor is more constant and bilateral.