[Jo S.]

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 have any holiday plans — mainly, our objective is to stay home and stay safe.

[Jo S.]

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 our executive skills start slipping. When mine begin to slip too far or too often, I’ll know it’s time to quit.

Toni, it’s great that your medication adjustment did the trick for your akathisia! That’s an interesting (and apparently effective!) dosing regimen at bedtime.

Jean, I understand not wanting to add more meds, but that’s the only thing that seems to help the akathisia (at least for Toni and me). My doc put me on rasagiline recently, but I hated the way I felt on it, so she said I could just stop taking it. If you don’t think the nourianz is helping or is making matters worse, perhaps it would be worth talking with your doc about stopping it and possibly increasing your C/L regular and/or ER instead. Although I still have the occasional “breakthrough” akathisia, my current med routine has made a huge difference for me. I hope you’re able to get some relief soon!

With regard to whether it’s the medication or the disease progression, who knows! It’s so strange to have a disease for which the treatment can mimic the symptoms of the disease itself, isn’t it?

Wishing you both a wonderful holiday season!

 

[Jo S.]

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 Netflix!) and have sorted out an indoor exercise plan (even though it’s hard to stay motivated). Oh, and soups … I’ve stocked the pantry with them! There’s nothing quite as warming and satisfying as a hot bowl of soup in the winter.

[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).

[Jo S.]

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!

[Jo S.]

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! 🙂

[Jo S.]

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, other than the motor symptoms I had observed with Michael J. Fox and Mohammed Ali, which didn’t fit me. However, once my doc mentioned it and I did some research, I had that “aha” moment and realized she was probably on to something. Of course, I wish she had been wrong, but once I had received the diagnosis from a MDS, all the symptoms I had been experiencing for years made sense and I was able to see how they all tied together.

[Jo S.]

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 Alexander Tressor’s (pdonthemove.com) workouts on YouTube (which I highly recommend), still keeping up with daily walks and the rebounder (using light weights). But, last week, I was up for a change, and wouldn’t you know it … I went back to my original aerobic yoga (along with walking and the rebounder with weights). So I guess the moral of my individual story is … the most effective exercise routine for PD is the one you like and will stick with (or go back to).

[Jo S.]

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.

[Jo S.]

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!

[Jo S.]

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 levadopa) and akathisia (which is a PD symptom). In fact, only an increase in my C/L has been able to mitigate the akathisia.

[Jo S.]

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 psychotropic medicines, it has gotten less coverage and has been less studied than most other PD symptoms. However, if I were to list my symptoms starting with the worst one, akathisia would be at the top.

Yup, it’s like RLS on steroids. When it occurs, I just want to jump out of my skin! I sway, kick, stand and sway, and do anything I can to move and try to make it stop. Sometimes I will do jumping jacks or go up and down the stairs until my legs are ready to give out, but that doesn’t always work. It can happen during the day or even at bedtime (if it happens while I’m in bed, I’ll do bicycle pumps with my legs in the air). It can even continue while I’m sitting on the toilet to pee — my legs will kick everywhere! I’ve had RLS for many years, so I know what it’s like. Akathisia, on the other hand, is like RLS for the entire body, magnified 1,000 times.

When I tried explaining to my doc what was going on, she didn’t seem to fully understand my use of the term, which was frustrating, especially since some organizations mention it rather explicitly. She kept thinking I was talking about dyskinesias, but I’ve actually never experienced them. After dealing with this for far too long, I have finally gotten it under control. My last appointment (telehealth) resulted in an adjustment of my meds that did the trick. Since I was able to narrow down the general time of day when it happens the most, she recommended adding a C/L ER to my midday dose of regular C/L. I also take a C/L ER around dinnertime and with my bedtime regular C/L. In addition, I take one at 2 a.m. each night. All of this together has helped keep it mostly at bay during the day and usually (though not always) at bedtime.

I’m relieved and encouraged that this simple adjustment has made a huge difference for me and greatly helped my quality of life. Please talk with your doc about a similar adjustment, if that’s feasible for you to do. Also, please know that you are definitely not alone with this. I totally understand what you described and empathize completely!

Oh, I also take amantadine (one cap in the morning). I believe that was added prior to the other med adjustments, though, so I’m not sure whether it has any affect on the akathisia.

[Jo S.]

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 when I need it most). I greatly appreciate your thoughtful and supportive words more than I can say.

[Jo S.]

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 should have come to the exam room with me. I felt awful. How was I to know that he should have been there too? So I asked my husband come back and the doctor took just a few minutes to fill him in on the diagnosis. (I ended up switching doctors within the practice after that, as I wanted someone more empathetic. I went with a woman who turned out not to be all that empathetic either, but at least she is slightly more so than the original doctor.)

Next, I told my sister, who is a retired doctor — her specialty had been physiatry (the study of physical medicine and rehab), so you’d think she’d know a little something about PD and be understanding. That wasn’t the case. She basically said that she has a few friends with PD and they’re doing great. (Honestly, couldn’t you just wring someone’s neck when they say that?!) The implication was that I should be doing great too and that PD is no big deal. In fact, I just spoke with her today (we live in different cities) and she said the exact same thing as before (her friends apparently are still “doing great”). I explained that everyone is different, that PD affects every part of the body (not just what you see on the outside), and that her friends probably aren’t doing as great as she thinks but that they may say they are or are trying to appear like they are because nobody wants to hear us complain.

The next person I told was my mother, who was in the relatively early stages of Alzheimer’s. She seemed to understand at the time, but since then she has rapidly progressed greatly in her disease and has basically lost her long- and short-term memory and can barely speak.

Next, I told an old friend/colleague that I ran into while shopping, and she casually said in response, “Well, at least it’s not cancer.”

So, in terms of empathy and support, I’ve pretty much had a no-hitter — except for my husband, who has been my rock and greatest champion. I would be utterly lost without him.

[Jo S.]

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 being your most bizarre symptom made me literally laugh out loud!)

I also have an extreme startle reflex, although I thought it was just me. I can’t tell you how relieved I am to know I’m not the only one with this! I’ve had near conniption fits when my husband accidentally drops something or a film/TV show or music come on too loud. I knocked my glasses off the other day trying to get a fruit fly that flew into my face, as I was screaming and flinging my arms everywhere (I know I’d look like a lunatic to anyone watching me). I’ve actually jumped several inches out of my chair (a feat I didn’t know was possible) when I’ve been startled. I end up hyperventilating and my tremor goes crazy when these things happen. I never used to be this way, but now so many things literally make me “jumpy” (and screamy).

[Jo S.]

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.

[Jo S.]

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 “tremor/twitch” for a couple of weeks, and now it’s gone. Then I developed shortness of breath, which I now experience occasionally but not constantly. I suppose the weirdest one is REM sleep disorder. I don’t physically lash out, but I do yell and scream some nights (terrorizing my husband).

[Jo S.]

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, this wouldn’t be a good choice. I also rented and watched the full documentary and wasn’t overly impressed in terms of the “results.” So, for me, it’s back to the drawing board in terms of waiting for the next big thing to come along for me to try.

[Jo S.]

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 how it goes (I have it on order but I’m not expecting it for another couple of days).

[Jo S.]

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

[Jo S.]

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 smaller size/weight. Getting one with the right weight is essential.

[Jo S.]

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!

[Jo S.]

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. It’s certainly not the same experience, but I feel a whole lot safer.

[Jo S.]

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 least I don’t have to buy new ones for a while! 🙂