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…[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]

Sue, is Rytary ER different from regular Rytary? I thought all Rytary was a combination of immediate and extended release, or is Rytary ER something new?

Hi, Al! My memory of 25/100 CL has faded rather quickly, but I know I was taking it about every three hours, usually one regular CL and one extended release at the same time. Then I would also need to get up in the middle of the night to take them. It was awful. Right now I take two capsules of Rytary three times a day (along with Gabapentin 100…[Read more]

I don’t care for the term “Parkie.” To my mind, it minimizes how complex, serious, and debilitating this disease is. It also sounds like we’re all alike, and nothing could be further from the truth.

I switched about a month or two ago. The initial transition was very difficult because it was hard to find the right dosage for me. At first I was way over-medicated and that turned me into an emotional wreck (literally). Once we finally got the dose down, I felt SO much better. Rytary isn’t perfect, but I must say that it’s significantly better…[Read more]

So far, the best product I’ve used is Liftware Steady for eating. Heavy silverware doesn’t really do much, but Liftware has a gyroscope that essentially “cancels” the tremor when a person with PD or ET eats. It’s pricey, but if eating is a real challenge because of tremors, it’s money well spent. I haven’t tried other gadgets yet, but I’m going to…[Read more]

I was diagnosed with essential tremor by a general neurologist about twenty to twenty-five years ago. However, I had many prodromal symptoms even before the tremor appeared. I knew that all these symptoms had to be related in some way, even though they seemed entirely different from each other. I saw many, many doctors (mostly gastroenterologists)…[Read more]