Jo S.

Oh, Barbara, that is just awful! What a difficult thing to experience. I was under the impression that DBS was supposed to help control symptoms, not make them worse. I also thought most PWPs could reduce their medications after DBS. Is that not the case? I’m wondering how you ended up with such terrible dyskinesia.

I was diagnosed at 64 in 2019,…[Read more]

I don’t identify with the term “disabled.” I’m fairly “abled” with most things, and I see people who are significantly worse off than I am physically. In fact, I’m fairly certain I appear perfectly “normal” (aka not disabled) to most people. My worst symptoms are those that others can’t see, but for the most part, even those symptoms don’t make me…[Read more]

Do you mean since I started taking C/L? If so, yes — many times. However, since I started Rytary, I haven’t needed any real adjustments. I have, however, needed to increase one of my supplemental meds (gabapentin).

Hi, Alan. Thanks! I just started taking a different probiotic/prebiotic, so please keep your fingers crossed for me that it will work. I’ve tried probiotics in the past and had no success. But this one is intended specifically for constipation, so I’m trying to remain optimistic this time around.

Thanks, Lou. I haven’t tried Kayam tablets, but I’ll look into them.

Hi, JB. I picked up the Smooth Move tea yesterday and got some Colace today (both the regular strength and the one with senna, for “emergencies”). The Colace regular strength that’s just a stool softener seems much easier and less messy to take than Miralax, so I’m hoping that will work and that I won’t need the one with the senna too often. I’m a…[Read more]

Thank you, JB! I’m familiar with senna, although I’m concerned because it’s considered “harsh” and one of those laxatives that could be viewed as “addictive.” However, I might try the Smooth Move senna-based tea that Roy (above) had mentioned. I use Miralax currently, but I haven’t tried Colace (yet). That is definitely a good option for me to…[Read more]

Miralax is what I’ve depended on, but it has begun to cause inflammation of my gut, so I’ve been looking into alternatives and also ways to just cut back on the number of days I use it.

Thank you! I’ve known about that tea for years but haven’t tried it. My concern is that senna can be harsh and is considered one of those “addictive” laxatives. Still, I’m going to check it out. I appreciate your reply!

Cynthia, I have the same problem. Mainly, I just ignore it and let the other person deal with my gaps. That helps me relax a bit more, which in turn helps me focus better. I also do word and number puzzles and play games that challenge my brain. Although I’m retired, I’m engaged in volunteer work that requires me to solve problems and communicate…[Read more]

For me, it’s chronic constipation. It’s a never-ending daily struggle.

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.