[Jo S.]

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 problems are definitely an issue for me, and while it’s great to be able to look online for the word I can’t think of or other things I can’t recall, I can’t do that when I’m in a one-on-one conversation. I do well for the most part because I stick to a daily routine and schedule. If someone were to take me out of that, I would not do as well. It’s one of the main reasons I don’t travel anymore. Looking at me from the outside, someone probably wouldn’t understand why I don’t travel or do certain other things, but it’s only because of my routine that I still look relatively “normal,” and I’d want non-PD people to understand that.

[Jo S.]

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 back again. There’s rarely a “just right” temperature for me.

[Jo S.]

Sherri stole my answer (just kidding, Sherri!). My reply: Unequivocally YES, with no hesitation! I’d sign up for it today if I could!

[Jo S.]

Ditto to everything Clive said! (Thanks, Clive!)

[Jo S.]

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 know). Being on extended release of either kind was somewhat helpful over ‘regular’ carbi/levo. Modest change in dosage, more or less, doesn’t seem to affect level or frequency of my akathisia in any case.

I’ve been on Rytary for several months now (and oh gawd is it expensive now that I’m in/out of the Medicare donut hole). It took a while to get my dosage right, but now that it is, I find it significantly better than C/L extended released because it lasts much longer in my system and my “off” periods with akathisia are fewer. They aren’t gone, though. I still get breakthrough akathisia when the meds are wearing off or haven’t kicked in yet. That makes me think the akathisia is related to the PD, not the meds. The meds only help to keep it at bay.

– I believe my skin sensitivity to cold (air, water) is part of the overall akathisia condition because it can set off the akathisia; there may be other aspects of PD that cause the skin sensitivity, too, I don’t know

I do have an extreme sensitivity to cold (weather, air, water), and the cold can definitely set off my akathisia.

– On the other hand, I came across a study once that said about 30% of people with PD have it to some degree. From which I conclude it’s rather mild, except for a few of us.

Yes, it seems that we are the chosen few. 😉 On the upside, at least we now know that we aren’t alone!

 

[Jo S.]

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 sense, you were quite fortunate.

[Jo S.]

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 kicked or punched about two times (for which my husband is very grateful it hasn’t been more).

David, being a neurologist, it must have been quite a shock to discover that you have PD. Are you self-treating or do you see a MDS?

[Jo S.]

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, but that could be because I’m incredibly thin (I’ve lost a lot of weight since my diagnosis, and I wasn’t very big to begin with), although cold has always bothered me. Although I haven’t experience what you described, I do know that PWPs can have “tactile hallucinations,” so it’s possible your experiences (and mine) fall into that category.

[Jo S.]

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 don’t fly anymore — or travel more than a half hour or so in the car. The combination of restlessness and needing to find a bathroom are just too challenging.

I supplement with vitamin B12 and D and just started taking MagTein, a special type of magnesium that can get through the blood/brain barrier. It is supposed to help cognition for people with PD. I don’t know if any of these are helping, but I like to think they are. 🙂

I’m going for an MRI next week and am concerned about having to stay still for 30-45 minutes. I was prescribed a short-acting valium to help me relax and get through it. Nevertheless, wish me luck! 🙂

[Jo S.]

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 gabapentin helps some, but, like you, if I’ve been sitting too long or if I’ve had a large meal (even though I really don’t eat very much) and the meds have trouble working their way through my gut, the akathisia can start up. It’s a shame you haven’t had any luck with any of the meds you’ve tried for this.

Physical activity helps me as well. When the akathisia starts, I often find myself running in place or up and down the stairs or doing some other type of exercise until my muscles are exhausted. The worst is when the akathisia starts at bedtime or an hour or two later. Grrrrr!!!

[Jo S.]

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 mg) and don’t need to take anything overnight. It’s heavenly in comparison.

Hi, Beth! I’m 67 and down to 90 pounds (and even 89 pounds on some days), so I feel your pain. I can’t say I’ve seen an increase in anxiety, but then again, it’s hard to tell. I do feel really strange at times and can have days (sometimes several in a row) when I’m quite down in the dumps. But that might just be the PD and not the Rytary.

[Jo S.]

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.

[Jo S.]

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 than CL, even CL extended release, in terms of smoothing the ups and downs of on/off times. Plus, it’s great not having to take the medicated as often, and I also make it through the night without needing to take anything to get me through. So, all the way around, I would recommend it, except that it’s very pricey, even with as much discount as I could get.

[Jo S.]

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 OT tomorrow to explore what else is available, so I might end up with a few more gizmos. 🙂

[Jo S.]

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) over the years — I’ve lost count of how many I saw. But it took over a couple of decades until I was finally diagnosed. Looking back now, I guess that’s not necessarily a bad thing, as it hopefully means the progression of my PD is and has been very slow.

[Jo S.]

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.

[Jo S.]

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 remember to find a suitable activity and then do it. 🙂

[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.

[Jo S.]

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! 🙂

[Jo S.]

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 happened recently and those that occurred a long time ago, but there is window of time that’s a blank for me. Sometimes my husband can shake a memory loose by filling in some helpful information, but often even that doesn’t help. It’s all rather unsettling and frightening.

[Jo S.]

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 hands/fingers and toes/feet turn weird colors? If so, do they turn white when you press them and then red/purple again when you let go?

[Jo S.]

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.

[Jo S.]

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 thread knows it doesn’t. So now, instead of calling it akathisia, I refer to it as “restlessness.” That seems to resonate more clearly with them for some reason and makes it easier for them to understand what I’m experiencing.

 

 

[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?