Jo S.

Sorry to be replying a year late, Al. I just saw your post today! I took several CL 25/100 immediate release tablets several times a day, along with CL extended release tablets. I had terrible off times with it, and it was difficult getting from one dose to the next. There was no transition period — I started directly with the Rytary and stopped…[Read more]

I love to do puzzles. I’m enjoying Wordle, when I remember to do it. 🙂 I also do Sudoku (which I did prior to my diagnosis). And I do online word-finder puzzles. I do think it helps my cognition (or at least that’s what I tell myself), but they are fun to do regardless.

Yes, I use one, and yes, it does seem to help. From what I’ve read, the best time to use one is for about half an hour early in the day (aka morning), which is generally what I do.

Pennsylvania, USA

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]