[jo-s]

Dry eyes was among my earliest symptoms. I’ve had it for probably 20 years. I was prescribed Restasis by my ophthalmologist back then and have been using it ever since. As Sherman noted, it is expensive. A generic version came out fairly recently, although it still is costly. My doc also had told me that I could get two doses out of each vial, so one vial is good for one day for me, as I use it in the morning and before bed.

I also have chronic blepharitis and take meds for that (doxycycline) and do warm eye compresses once or twice a day. Blepharitis and dry eyes are among the many symptoms of PD. The Restasis and doxycycline help, but they don’t cure either condition. It’s just something we need to treat and have to learn how to live with.

[jo-s]

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 feel disabled, at least not at this time. (Maybe catch me next week, and I might sing a different tune! haha)

[jo-s]

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).

[jo-s]

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

[jo-s]

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.

[jo-s]

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.

[jo-s]

Pennsylvania, USA

[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 company I retired from, doing Sudoku puzzles (the easier ones!), reading oracle cards, visiting art museums, and going for long walks with my husband.

[jo-s]

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 online, but I prefer in-person ones much more.

[jo-s]

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.

[jo-s]

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.

[jo-s]

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 me. I know I’ll inch back up closer to 90 eventually, but it’s still shocking (and 90 pounds is still terribly underweight). The thing is, I love food and enjoy eating, but my tastes have changed significantly, and the type and aroma of food (and the seasonings on/in it) can  greatly affect whether or not I will be able to tolerate it.

[jo-s]

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 am very sensitive to food odors and seasonings and do best with sweet and bland foods. I have slow digestion and chronic constipation, which add more layers to the problem. For people like me, frequent small meals throughout the day made up of foods I can tolerate works best. My biggest concern is overeating, because that often means I’m too full to eat anything more that day. It’s also a good idea to limit fiber and fat (as these both slow digestion even more).

[jo-s]

Michael, what brand(s) did you find work? Are you consuming a full 8 ounces of yogurt or kefir  (beverage or spread?) two times a day? I would love to find out more details about what is working for you and how much and when you’re having the yogurt or kefir.

[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, although I’ve had symptoms for probably 20 or more years. My meds have finally been “sorted out,” at least for now, but I do have a touch of dyskinesia, although it happens when my meds are due rather than when they’re at their peak.

I’m wondering if there is some adjustment that can be made regarding the DBS or your meds. Do your doctors have any advice? I’m so very sorry that is happening to you.

[jo-s]

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.

[jo-s]

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

[jo-s]

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 tad older than your husband, but I’ve had constipation problems for several decades. Who would have thought it was related to PD? (Not me, and not the countless doctors I went to for it over the years!)

[jo-s]

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 keep in mind. Thank you, again!

[jo-s]

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.

[jo-s]

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!

[jo-s]

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 solutions to others online. I think all of that helps my verbal communication and focus quite a bit (at least most of the time).

[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 the C/L immediately.

[jo-s]

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 recommended anything, but I will be seeing a new PCP in November, and I imagine she’ll have some valuable suggestions. I haven’t tried FDGuard, but I took IBGuard for a long time prior to my diagnosis as I thought my digestive issues were due to IBS (PD wasn’t anywhere on my radar). Like your experience with FDGuard, the IBGuard didn’t help me. I agree — Parkinson’s has changed my tastes. It’s sad because I used to really enjoy eating and trying a variety of flavors and seasonings. Like you, I wouldn’t eat now if I didn’t have to, which I know is hard for most other people to understand. Yes, let’s stay in touch, Beth! That would be great!