Jo S.

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]

Toni’s post perfectly sums up my feelings. I appreciate having a place (that’s not Facebook) where we can talk about issues that only those who are affected by PD can understand. I am grateful to the people who have coordinated this for us and to all the participants — care partners and PWP alike.

Hi, Toni. I’m very interested to hear what your neurologist tells you and advises. Best of luck, and hang in there until then! I’ll be thinking of you!

Hi, Charne. What I experience is definitely not dyskinesia or related to dyskinesia. These are not uncontrollable movements but deliberate movements, which which those of us who experience akathisia can adjust as necessary to reduce the indescribable sensation of restlessness. There is quite a distinction between dyskinesia (which is caused by…[Read more]

YES!!!!!!!!! I have actually used that term with my MDS, as I came across it a while ago. Some sources say that akathisia is a PD symptom, while others don’t acknowledge it or call it something else (such as “restlessness,” which doesn’t fully cover how truly awful this symptom is). Because akathisia is most often associated with withdrawal from…[Read more]

Thank you SO much, Toni. Your compassionate reply truly made my day. I’m curious to see the thread about the frustrations of talking to family about PD. If you come across it, please let me know. My husband accompanies me to all my appointments now, too (for the reasons you mentioned as well to compensate for my memory, which tends to fail me just…[Read more]

My husband was the first to know. Although he didn’t initially accompany me into the exam room, he drove me to the appointment and stayed in the waiting room. At the end of the appointment, the doctor asked me something that triggered me to tell him that my husband was in the waiting room, and the doc almost yelled at me, saying that my husband…[Read more]

Toni, I can SO relate to your post! I, too, have “catcher mitt” hands. Although I’m an excellent typist, and my tremor is in my left hand, my right hand “twitches” or “jumps” sometimes and hits keys that I don’t want it to. It’s unnerving, but since the hand is attached to me, there’s not much I can do to stop it. (Your comment about this not even…[Read more]

Yes, I experienced tinnitus prior to my diagnosis. I actually had a lot of common prodromal symptoms, but my doctor didn’t suspect any of them were connected, which caused me to go undiagnosed for many, many years.