Jo S.

I used to enjoy artwork, needlework, cooking, and baking, but I can no longer do those as I have both resting an action tremors. I am trying my hand at adult coloring books, but I’m using my non-dominant (non-tremor) hand, which is both interesting and challenging. I also enjoy reading, doing creative writing, doing freelance editing for the…[Read more]

My husband and I play a card game I love called “Spite and Malice” that takes some strategizing and concentration. I also do Sudoku puzzles and word search puzzles. I’d play more games (chess, backgammon) if my husband liked them as much as I do, but since he doesn’t, these will have to do for now. I also occasionally look for games I can play…[Read more]

I wake constantly throughout the night. Fractured sleep (and insomnia) is among the many symptoms of PD. I’ve tried a wide range of treatments, from melatonin to magnesium and everything in between (except prescription meds), but nothing has helped, unfortunately.

I get a flu shot annually. I’m now get the stronger one for people over 65.  Even with that one, I’ve never had a problem or reaction of any kind.

Thanks so much for your reply, Beth! I haven’t tried Whole Foods cranberry muffins, but I love Trader Joe’s blueberry muffins and banana walnut bread. Sweet, plain, and bland are what taste “good” to me these days. And, yes, plain Saltines fall into those categories. I need salt as well, and plain Saltines check all the boxes. My doctor hasn’t…[Read more]

I have similar problems, Beth. I’m also petite to begin with, and my appetite is limited because I have mild gastroparesis and early satiety. I eat nut butters, nondairy ice cream, dark chocolate, pastries, etc. as well as more wholesome foods. I still continue to either loose weight or not gain. This morning I weighed 87.3 pounds, which scares…[Read more]

I struggle to keep weight on. I have lost quite a bit of weight the past few years and am considered underweight by all standards. One issue is that I have early satiety, so I can’t eat a lot at a sitting. If I do I will be in pain for hours on end. I also have restless legs/body, which doesn’t help matters. I haven’t lost my sense of smell, but I…[Read more]

Rona, I’m right there with you. I, too, have Raynaud’s and can totally relate to what you’re experiencing — freezing one minute and burning up the next. I wonder how many people with PD have Raynaud’s. When the MDS asks if I have numbing or tingling, I don’t know what to say because it’s really because of the Raynaud’s, not PD. Do your…[Read more]

So true, R. Bonanno, and well stated! I’d also add mood fluctuations, digestive issues, constipation, cognitive problems, and so forth to the mix (my mix, at least). The non-motor challenges are often so much more of a hurdle for us than the visible motor ones.

As others have already said, I’d want non-PD people to know that how we look isn’t necessarily how we feel. I might look “normal” to most non-PD people, and that can be problematic when I’m having trouble speaking and can’t find the right words, or when I can’t remember the name of something or someone or can’t recall how I know them. Memory…[Read more]

Karla’s reply pretty much mirrors my own experience. Sometimes I get so hot I want to scream. Then I put on the air conditioning and freeze. I get so cold that I find it painful to undress to take a shower. I shiver in the shower for at least ten minutes as I stand under the flowing hot water. I continually vacillate from too hot to too cold and…[Read more]

Sherri stole my answer (just kidding, Sherri!). My reply: Unequivocally YES, with no hesitation! I’d sign up for it today if I could!

Ditto to everything Clive said! (Thanks, Clive!)

Hi, Jean,

most neuros i have spoken to about akathisia have lumped the symptom with dyskinesia. the xadago seems to help, although, if i get anxious, akathisia can sometimes kick in.

That’s the same with me with regard to anxiousness and the akathisia. My MDS also seems to think akathisia has something to do with dyskinesia, which everyone in this…[Read more]

Hi, Gary,

Pardon me for copying/pasting your post, but I wanted to respond to some of the things you said.

– I have been on extended release carbi/levo for close to two years, was on Rytary before that (a brand name extended release). For me personally I was finding no difference in benefit between the two (Rytary is way more expensive as you k…

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Oh my, David — I can certainly appreciate how awkward it must be that your MDS was once your trainee. Life has a way of turning the tables sometimes, and I guess your situation is one of them. On the upside, your professional relationship was already cemented, and you had the inside scoop on who you could trust to be your own doctor. In that…[Read more]

I have odd dreams as well, and they are incredibly clear and vivid, but when I wake up, I can only remember a tiny snippet of them. I also have the occasional REM sleep behavior disorder, but I’m lucky that it’s the exception rather than the rule. I usually just yell something out loud (when I’m angry and yelling at someone in my dream). I’ve only…[Read more]

Hi, Todd! My experience is a little different from yours. I do feel odd sensations occasionally — for example, it feels like there are cobwebs on my face or arms, or it feels like an insect is crawling up my arm. I try to swat these things away, and must look like a maniac, but there’s usually nothing there. I’m much more intolerant of the cold,…[Read more]

Oh, Gary, I forgot to address a few other things you mentioned. I, too, am extremely sensitive to cold. I find it difficult to even get undressed for a shower, as I shiver while waiting for the water to get hot, and even once I’m in the shower and the water is hot, I have to move back and forth for a very long time before my body settles down.

I…[Read more]

Hi, Gary! Welcome to the club no one wants to belong to! 🙂

I switched to Rytary a few months ago, and that seems to have helped quite a bit, as off times are far less frequent. I also started on gabapentin to help prevent breakthroughs with the akathisia (my doctor calls it “restlessness,” but you and I know it’s far worse than that). The…[Read more]