Jo S.

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.

Marlene, it is fascinating that you can still smell good aromas but can’t smell bad ones! I still have my full sense of smell, so I get to experience both good and bad smells.

It’s hard to pick just one bizarre symptom — they all are bizarre, aren’t they? Also, I have some that come and go. For example, I had a very annoying eyelid…[Read more]

It’s interesting that you posted about gut health, Skip, as that was one of my first symptoms (many, many years ago — long before I was diagnosed with PD). My experience with mannitol wasn’t very good, as it increased my bloating and had other undesirable gut-related side effects. Mannitol is a FODMAP, so if anyone is following a low-FODMAP diet,…[Read more]

Hi, Ally. I heard about it recently, just a few days before I watched the documentary. I haven’t talked with my doctor about it yet. I’m going to continue with my meds and just add the mannitol. If I continue with it, I’ll definitely discuss it with my MDS at my next appointment or message them before then if I have any concerns. I’ll let you know…[Read more]

The extra weight is definitely calming for me, Ally. Maybe I should get a weighted vest too! 😉

I have a weighted blanket and love it, but not in the summer heat. I’ve always liked having some extra weight on me when I sleep, and it’s especially appreciated now that I have PD. I originally purchased one that was too heavy and couldn’t even lift it off me when I got too hot. We returned it and purchased one that was better suited to my…[Read more]

I’m excited about it and am going to try mannitol. If there aren’t any side effects, it shouldn’t be a problem adding it to my C/L regimen. And if it helps relieve some of my symptoms … all the better!

We’re planning on dining in or occasionally getting take-out. While I used to love going out to restaurants, wearing a mask and distancing from other diners takes the appeal out of it.

I miss the gym (and my Rock Steady group), but I wouldn’t go back for at least a year. Fortunately, I’ve been able to come up with alternative workouts at home.…[Read more]