todd-kitten
Forum Replies Created
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Dear Bari,
I can’t offer advice on a new mattress, but I can forward advice from a fellow PWP on your new symptom. He highly recommends a “BedJet” for people who are too hot or cold in bed. Add “.com” to the end of that word, and you’ll arrive at their website. I’m not associated with the company and haven’t tried it, but my friend swears by it.
As for myself, I currently don’t have trouble turning over in bed, but I am one of those PWP who suffers from REM sleep disorder. For a long time, I tried to deal with that by taking melatonin, and have tried regular, controlled-release, and fast dissolving (sometimes in combination). However, I still found myself thrashing in bed, as documented by the app I added to my phone that is noise-activated and, before I moved out of our bed, by my wife. I eventually decided to take my neurologist’s advice and he prescribed clonazepam. I take 0.25 mg and it pretty much knocks me out for the night. I’m still not crazy about the taking it, but it has allowed me to return to sleeping in the same bed as my wife without much in the way of worry for either of us (Knock on wood!), so it’s worth it. Good luck!
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Not exactly, but I have lost weight since being diagnosed and although that has leveled off, I’m unable to regain weight that I have lost. I can eat anything I could eat before and still have my senses of smell and taste, but because my stomach contents move slowly (gastroparesis), I’m just not as hungry as I used to be. Unfortunately, the drug they usually give people to treat this aggravate other symptoms of PD. Also, eating fiber, which helps with constipation, also aggravates gastroparesis. I haven’t found the answer, although I will say that with so many people trying to lose weight, I don’t get a huge amount of sympathy for this symptom! Also, I have read that there is at least one drug approved in Europe that supposedly works well. Maybe it will eventually be approved in the U.S.
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Gary and Jo,
The more I read about your symptoms, the more I think I may have the same thing. Starting this past winter, I would often have the sensation that cold wind was blowing across my lower legs, from about my ankles to mid-calves. I could be wearing pants over thermal underwear over socks inside a warm house and it wouldn’t make a difference. I had never felt anything like that. At around the same time, the skin on the underside of my legs became sensitive to touch, enough so that I bought a device that would allow me to switch my desk to a standing desk. (Now I switch it back and forth.) Does that sound familiar or no? I’ve had the akathisia or whatever it is for almost as long as I’ve known I had PD, but this cold sensation has been relatively new, so I hadn’t connected the two. The main thing they have in common is that I never find anyone else who experiences either sensation. Unlike the akathisia, I can’t tell if my C/L helps at all with it, nor have I found anything else that does.
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Bolt,
Fair enough.
Actually my latest quest for a dietary adjustment would be to find a good source of farnesol on the chance that it might help. (It’s apparently found in certain fruits and vegetables.) However, the reason bringing this up would take us off-topic. Still, I expect that this article will get some attention from the website that we’re on now. The journal the article was published in is highly regarded, and for good reason. This article has a supplemental file with more than 70 tables presenting the raw data on which their conclusions were based.
I’m not sure if the article is publicly available yet and it’s too technical for most readers anyway, but I found it very encouraging:
https://pubmed.ncbi.nlm.nih.gov/34321320/
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Bolt,
I have one more question for you. I’m curious about your choice of supplements and your decision to cut back. You mentioned your reasoning for some of your choices, including noticing an effect of melatonin. (The same has been true for me. I also have REMSBD, though for me, it’s definitely accompanied by PD.) However, beyond that, what has guided your decision making? I usually try to add one new drug or lifestyle change at a time and then attempt to determine whether there is a positive effect. So far, I’ve had very little luck. Of course, this is made more difficult by the possibility that it’s hard or impossible to detect a slowing in the rate of deterioration, which might be the best that PD patients could hope for in most situations. Even so, I have been trying to do “N of 1” studies on myself. When I first heard about this, I was skeptical because among scientists “N of 1” is usually a derogatory characterization of a poorly done study, but I thought this article made sense. I wonder if you’ve ever done this without realizing that’s what you were doing and if so, which of your treatments passed the test. If you’re interested, you can read about it here:
https://www.knowablemagazine.<wbr />org/article/health-disease/<wbr />2020/single-subject-design
-Todd
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Those are great questions. I hope you get some answers. I went back and took a second look to see if the article had an online supplement where that sort of detail is often published, but as you probably saw also, they didn’t.
BTW, your link got cut off. This one might work better:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7458210/
This version of the article is free to the public so anybody who wants to read it should be able to.
I think it’s likely that at the very least at least some people either acquire PD from their gut or their gut contributes to the condition. That may be an overly cautious assessment, but it’s hard to say right now.
As you probably know given your level of interest, the gut microbiome is complex, and the good news and the bad news is that for other conditions, at least, health or disease is often associated with certain metabolic capabilities rather than a particular bacterial species. That’s bad in that it makes it more difficult to assign blame to one particular bacterial species or hope to cure or prevent disease with another. On the other hand, it may mean that one day we’ll be able to ingest a bacterial cocktail of species with health-associated genes or metabolomes and there will be at least a few that will be capable of colonizing each of our colons, despite their differences. And of course, feeding them is also important. We’ve probably both read the same advice that a plant-based diet is best at delivering the nutrients that will make it all the way to the colon where the good guys are located.
It’s a fascinating topic, but given its general complexity and the scarcity of work done with good animal models, it’s hard to know how much time I should spend on this literature. I still have my day job and would like to keep that for a while. In fact, I have ~80 million base pairs of bacterial DNA on my hard drive right now that I’m working with, but the project isn’t related to PD. And of course exercise is good, and I’m trying not to not completely neglect my wife(!) Nevertheless, I may not always be prompt about it, but I’ll be happy to try to answer questions online or off if I’m able.
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Bolt,
I should also say that I would be interested in hearing about your diet and your supplements, probiotics, etc. I adopted a vegan diet for a while. It was great for preventing constipation and for weight loss. The problem was that I didn’t need to lose weight, and I eventually had to add in other foods to start to regain some of what I lost. However, my vegan (semi-)personal trainer would be in complete agreement about periodic fasting and if your carbohydrates are from plants, then your diet as well!
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As a PD patient and a microbiologist, I found this study interesting. As you pointed out, the study had good and bad points. For the latter, as you noted, they stopped testing after 3 months. Also, by the 7th month, only 4 of the 10 colonic transplant recipients still reported satisfaction. As for the 2 who were still happy after 10 months, it would be interesting to know whether the results would have been the same or different with a placebo group had they included one. It’s nice that the colonic group showed superiority over the nasointestinal group but they didn’t tell us if people were assigned randomly to those two groups. Finally, it was a very small study.
On the positive side, I would love to see a cure for PD, but I doubt I’m alone in that I would be pretty excited to have a treatment that did no more than stabilize my symptoms. So when I see that most of the colonic patients showed substantial improvement and that it was more than momentary, I can’t help but like that. Good news is better than bad, even if it is preliminary. A PubMed search for “microbiome” and “Parkinson’s Disease” turns up 586 articles, so this is clearly an area of interest. In my quick scan, I didn’t see any human studies better than this one, but apparently there’s at least on clinical trial going on:
https://www.clinicaltrials.gov/ct2/results?cond=parkinson%27s+disease&term=fecal+transplant
It is supposed to involve 48 patients, blinding of everyone involved, and follow up for 12 months. There are some other interesting aspects to this study as well that I won’t mention. Something to watch for, but not for a while….
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Hi Ally,
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.
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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?
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Hi Rob,
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.
Thanks.
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Daniel,
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
</sup>(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>etc.
https://parkinsonsdisease.net/answers/differences-essential-tremor/
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.
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Hi Robert,
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.
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I had been taking medication to control essential tremor for years when at the age of 52, I began to notice that the tremor in my right side was getting worse and had a different amplitude. Then one day I noticed my right arm wasn’t swinging when I walked. I did a Google search on something like “one arm doesn’t swing when I walk” and both signs showed up on a list for Parkinson’s. My father had had it too, so it didn’t seem that far fetched.
I told my family physician what I suspected at my next checkup. He asked me to hold my arms out straight and when he didn’t see much shaking, told me he didn’t think I had it. However, he also gave me a referral to a neurologist who specializes in movement disorders and after a much more thorough exam, he diagnosed me. That was 3 years ago. -
Hi William,
I don’t have an answer for you, but I do have a question that may help you arrive at an answer. Are you sure what you’re experiencing is dystonia and not dyskinesia? (I keep a cheat sheet to distinguish that two terms from each other. I think dyskinesia is a much more common side effect of Sinemet.) If you do a Google search on the two words “dyskinesia” and “DBS”, I think you’ll find a lot of sites that suggest the answer is “yes,” but I have no personal knowledge about how well it works for that.
Good luck!
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Yes I did, growing up on a cotton farm. I remember when it first came out. I’m sure I was also exposed to paraquat, which was used for defoliation in years when harvest time arrived before a hard freeze. That was also true for my father, who also had PD. On the other hand, I doubt my grandfather (my father’s father) was exposed much, and he had PD as well. Conversely, my three brothers, two of whom are older than me, were probably exposed to the same extent I was to both and none of them have developed PD–at least not yet. As a scientist, I find this whole process of trying to identify environmental causes frustrating. There are plenty of reasons to suspect they exist, but it’s difficult to tease out which ones are most important and for whom. Still, I’m encouraged by programs like Fox Insight. Although it’s just answering questionnaires, this may be our best hope for addressing questions like this concerning causality, particularly if we can get to the point of pairing these responses with rich genetic data.
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I’ve been trying to figure out if akathisia is the name I should give to my most troublesome symptom after reading about it in a book (The New Parkinson’s Disease Treatment Book by Eric Ahlskog). When it’s bad, I feel like I want to crawl out of my skin. Walking or other movement helps only to the extent that it distracts me. And while I would describe it as a psychological or inner discomfort rather than a physical symptom, I seem to feel it in the quads of the leg on my right (PD) side, and rubbing on that leg helps a little. (I realize that seems contradictory, but it’s hard to explain.) It responds to Sinemet, although if I want to avoid it entirely, I have to raise my dose so high that I experience dyskinesia. I have yet to talk to any PD patient who seems to share this symptom. I can’t tell if we’re experiencing the same thing or not. I haven’t tried amantadine yet for this or any other symptom.