Jo S.

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]

Hey there, Marla! I also have a mini trampoline. I use it to supplement my exercise program when I’m unable to get outside for a walk. But it’s also great for relieving stress or when restless legs or akathisia kicks in.

Oh yes! Stress is my worst enemy and exacerbates all my symptoms (esp. tremor and anxiety). I practice mindfulness, but I think when it comes to PD and stress, mindfulness is exceedingly difficult to apply. Your idea of keeping “mindfully active” makes an enormous amount of sense to me and is something I also find helpful. The secret is to…[Read more]

I do my yoga routine first thing in the morning — mainly because if I don’t do it then, I won’t do it later in the day. 🙂 In addition to getting everything loosened up, it also helps set a positive tone for the rest of my day.

I love to crack jokes about my PD — from not needing a mixer in the kitchen to not having to plug in my “electric toothbrush” in the bathroom. If we can’t laugh at ourselves (and get others to enjoy our self-deprecating humor), who will? Well, probably a lot of people … but at least we’ll beat them to it! 🙂

Indeed, every day with PD is different and unique. My worst struggle changes from day to day, week to week. Right now, I’d say that constipation and digestive issues along with insomnia/fractured sleep are my worst struggles. However, I’m dealing with a fair amount of mid-term memory loss, which is quite upsetting. I can remember things that…[Read more]

Hi, Ally. Happy holidays to you! Does a complete lockdown mean that you can’t even go grocery shopping? I’m wondering what that all entails. It does sound scary but also very positive. I wish something like that could be enforced in the US and we finally move on from this damned virus (after everyone would also agree to get vaccinated). We don’t…[Read more]

Hi, Jean and Toni,

Jean, I’m so sorry you’re going through this, too, and that you needed to step down as forum moderator, although I totally get why. I’ve needed to cut back on my commitments as well, and every day I ask myself if I still feel up to working full time. If I stopped, I think I go crazy from boredom, but there comes a point when…[Read more]

I’ll have to check out those books, Ally! Right now I’m reading Waking by Matthew Sanford. If he can overcome the obstacles life threw at him, I think I can cope with PD. 🙂 I have so many books here that I need to read. Unfortunately, my memory has been flagging lately, and I can’t recall whether I’ve read certain books or not. On the upside, at…[Read more]

Hi, Ally. I’m definitely feeling the winter blues and it’s not even officially winter yet! The time change threw me way off balance, and I’m still not on an even keel. One thing I’ve been trying is a “happy light,” which is supposed to help with mood and sleep during these shorter, darker days. I have also stocked up on books (a good change from…[Read more]

I didn’t have sudden BP drops prior to being diagnosed. However, since then, I’ve had them and have passed out three times (which is pretty scary).

Not me. I definitely don’t want to go to the doctor’s office if I can avoid it as my doc is in a hospital setting. That said, I had a really good telehealth appointment with her earlier this week. In fact, oddly enough, it was even better than our in-person appointments have been! lol!

We’ve got Google home in almost every room in our house. We’re weather freaks, so we’re always asking it about the weather. But we also enjoy asking it all kinds of questions when we aren’t online via a computer or phone. One of the things I really wish it could do is … give me a back massage! 🙂

I had no idea that I had Parkinson’s. I had numerous prodromal symptoms, and I sensed that, despite their diversity, they were somehow related. It wasn’t until my primary care physician noticed that my usual essential tremor was also now a resting tremor that she mentioned the possibility of PD and getting screened. I didn’t even know what PD was,…[Read more]

I’ve tried a variety of exercise routines. I was doing a form of aerobic yoga prior to my diagnosis, along with jumping/bouncing on a rebounder (mini trampoline) and walking. I later tried Rock Steady boxing, which I enjoyed, but then Covid-19 came along and the virtual boxing classes just didn’t do it for me. So I switched over to a couple of…[Read more]