Todd Kitten

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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.…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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.

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…[Read more]

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.

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 s…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]