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What’s your most bizarre symptom?
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In the scheme of things this counts for, well, nothing, but it makes other people giggle. Myoddest symptom? When I get a pedicure, the pedicurist scrubs the bottoms of my feet with a lava stone. And it KILLS me. My feet are so sensitive that I cannot tolerate it any more. The ladies working in the salon all get a great giggle out of it when I moan and wiggle but it truly is torture for me! Does anyone know if Parkinson’s make you more ticklish?
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Hiccups!
(Among another 20 – 25 other symptoms resulting from PD.) Someday maybe each of us could list them. It would be interesting to me.
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John Carter,
Thank you for your response. Yeah I fall over a lot and I walk like Im holding my arms out pretending to be an airplane. My doctor had just increased the dose and she said on exam I’m getting better but then I asked her why is my walking worse, my falling worse and now I tremor in my head and shoulders at times.
<div dir=”auto”>She said that the cl won’t help those things. But she’s sending me to physical therapy. I feel like I don’t know how to cope with Parkinson’s and I’m hoping that will pass. But it just started in January and I just got diagnosed a few months ago and since January it’s just moved like a rocket. I already had to quit working. I somehow keep thinking that I’m missing something, like there’s</div> -
Folks,
I promise this post does have at least a little bit of bizzare symptom meme to it. It is a really long post. I have finally given up editing it so that I can go to sleep. Forgive any repetitions, syntax errors, or typos. I do have spinal stenosis, you know!
Also, I am pretty sure I warned everyone when I joined this forum a while back that I sometimes had a somewhat unusual sense of humor, which has been begging to be exercised for a while. So with that in mind, please accept the following with the best of humor.
For some reason, when I couldn’t easily get to sleep the past couple weeks (not that this is something new mind you), I found myself thoroughly enjoying watching the US Track & Field Team Olympics tryouts which were shown on my TV in the late late evening. I think they were held a couple of time zones West across the country in Oregon. And I am sure you are all now wondering. Yes, I did indeed run track in high school, if you can call what I did running. I think I finally got a fifth place ribbon at one track meet in some sort of B team relay event (not the hurdles) as my crowning achievement. I did enjoy it though. Our team needed a third “hurdler” so I was drafted to spend a couple years trying to figure out the concept of how a not so tall kid can compete in a hurdle race in any rational way. I never did really figure that out. I do remember at one point the coach telling me to be careful to not injure my fellow team members when I was doing my usual knocking over of the hurdles instead of jumping over them! The coach told me he really needed those fellows for the upcoming baseball season and for next year’s basketball team and he was worried for their safety. You know the type, the tall long-legged lanky guys. They also let me be the teams’s third long jumper too! I was what would be described as a very earnest high school athlete. At best I was a very late bloomer athletically. In my late twenties I could actually run for exercise. But it took me all of that time to figure it out. Not born with this type of talent for sure. Thankfully my military service was as a musician for which I was much more talented and thankfully a much, much quicker study. So no athlete was I for sure.
Anyway, all of the above has really caused me to have a really bizarre thought. I believe with this PD thing now a part of my life I may have been presented with a second chance at athletics.
If it could be guaranteed that none of us would be injured, we should have a PD Olympics! This make so much sense to me now, I have to believe many of you were thinking just the same thing! Am I right?
We could have some uniquely PD events having to do with stiffness or tremor and stuff like that, I suppose, like who can take the longest or be the quickest at many things (some “events” that probably shouldn’t normally be discussed in polite society), but I am sure many PD people could excel at some of those type of events. These events would be in addition to the usual events like pole-vault, long-jump, 100 meter hurdles and 400 meter hurdles, or even better, the 3,000 meter Steeplechase, and, of course, the Javelin throw, Discus throw or Hammer throw. I think you can stand still and do those throw events. I would definitely try out for some of those. That would be a riot. (FYI. I am at the point now where I can barely figure out how to get my hands close enough to my feet to put on my socks or tie my shoes without falling over onto the bed. But I keep trying.) And high jump, most certainly the high jump. Only those of us over the age of 65 would be allowed to compete in the high jump. None of that 7 feet 8 inches or so I watched some young fellow clear last week by going over the bar both upside down and backwards. I am sure we would be talking about 1 or 2 feet! Maybe not. Two feet seems awfully high to me now. And that would be after the eventual winner had stood there and “thought” about it for a half hour or an hour or so. I definitely think most of the events would be very very long. And I can picture the sprints. The starter yells “Runners take your mark.” Then about 5 minutes later when everyone in a starting position, he yells “Set” and, of course, a few would stand up to say “what did you say”. And then, about another 5 minutes later, when everyone is finally set and the starter pistol fires off, half of the runners are so startled they fall over backwards, even though they are all leaning forward waiting to start the race. It will be a fun day for all!
The Hammer throw. I think I would try out for that. I recommend you Google it. Definitely the Hammer throw for me. I think you can just twirl around on one foot. That’s sort of like how I change directions in a crowded room some of the time. We all have new talents that we did not have as younger non-PD people. I really think this is going to work.
To make this Olympics even better, the spectators would be only Movement Disorder Neurologists and Neurology students. This would give them the chance to see how us real PD people actually move or not move when we are really really trying and no one is looking. (that’s a very good joke for those not reading closely). Our very dedicated PD doctors don’t really get a chance to see us outside of their offices. They only see us during our “Show Times” when we, and our family, are on our best behavior. This would be good for them. Maybe this PD Olympics could be held jointly with one of their PD convention things.
That would surely be the funniest, I mean funnest, day or week or two for all of us. Of course, there has to be some way for no one to get injured (what does it mean that I keep saying this over and over?) or this Olympics would only last an hour or so before all the participants are either on the ground or unconscious or, more likely, all just frozen in place staring at each other waiting for their particular version of PD to either decide what to do next or waiting for their particular version of PD to decide to finally let them decide what they already want to do! A whole stadium filled with frozen mostly old folks in track and field attire. What a mental picture. Everyone would have to have a headband, of course. You can’t participate in the PD Olympics without a headband.
Now about those “drug tests” you hear about that those normal Olympic participants have to deal with. I think we are going to have to be really really quiet about the PD drug thing ok? If no one says anything about it I am sure no one will notice the weird rattles that come from those pill boxes in our pockets that occur with our every step. Hey, I only have about 25 pills in mine. That’s not so much, is it? Let’s just agree right now that if no one brings up the drug test thing we may just be able to not have the subject be an issue. Let’s all just agree to agree about that. You know, if you don’t talk about it out loud, it is not real. Not that any of us has ever had a thought to do that with a new PD diagnosis or some such thing. Right? There is absolutely no reason to think it won’t work for this issue too. This does raise a question for some of the longer running events where surely some participants might need to stop to take their “meds” during the event because I don’t think an off time at the wrong time will work for this Olympics thing. I am not going to try out for those events. I am on a short “meds” refill regime nowadays. I think you could pretend to fix your shoe or something. I am sure that would work. Hide the pills in your shoe! Problem solved. Remember to not talk about the meds!
As all of your posts above clearly show, we PD people are all so alike and yet so completely different. I am sure that it is obvious to all of you that none of us would have to start training for these Olympics because we are all already constantly training harder than we ever have before learning how to deal with our PD thing. This is going to be easy for any who want to participate. Don’t you think? Easy Peasy!
I told you I have a weird sense of humor. If you can’t have a sense of humor about this very very strange thing someone decided to call PD and then left under our pillow one night, then I don’t know how you cope with your life with not sleeping with a pillow ever again. That would not work for me. You have got to laugh and get on with it.
I am coming to believe that it is kind of sad that everyone else has to just continue to live the last parts of their lives with the same old body and mind they were issued some many many years ago and that they have to spend so much time and effort looking for new and interesting things to do.
We PD folks have been gifted the opportunity to experience the always new and interesting and unexpected without ever having to work hard at it. We don’t ever have to plan to find these things. They just show up every day without our even asking. It’s like serendipity or something.
Now the Olympics! Mere mortals could not think to qualify after a certain age. Except maybe for those few folks who can own an Olympic standard jumping horse or maybe the archery or pistol competitors. I know old folks can be really really good at shooting at stuff. (Oh, that’s right. The tremor thing some PD folks have. Oops! Sorry!) (Can you please keep on task and stay focused? Oh yes, Sorry about that too.)
A chance to be an Olympian. Yes. Now that’s the ticket!
I know this is just a weird thought from someone with some very weird “plumbing” problems, “bizarre” balance problems, very “interesting” brady-phrenia problems (I seem to remember that has to do with thinking right? Just so you know, I have been very lucky to still have a really fabulous memory – even if it isn’t very long.). And I am also now having to take a larger dose of the magic pills every three hours just to be able to pretend to be the least bit normal. No complaints, this is just a normal PD journey. Right? Right? Yes, yes, of course it is.
Let me know if anyone has the talent to organize the PD Olympics and will get this thing going. Since we all have PD, I think I am safe in saying “No hurry”. Next year will be ok. It will give all of us something to try to remember, I mean something to look forward to.
I will certainly try to qualify for several events, so I can show off my new me! Hammer throw, High Jump. Could “Falling Asleep at the Drop of a Hat” be one of the the new events? I think that could be a really good one of the unique PD events. Normal non-PD people can’t do that very well. I am already really really good at that. I received a gift of the remarkable talent for that along with my PD version gift.
I live in Illinois at about 600 feet above sea level. If I do this Olympics thing, should I consider a move to Colorado. I heard that training at altitude is a really good idea and all the good USA Olympic runners do that. I am sure it would be no problem to sell a house, pack up everything and move across the country, buy a new house, find new Doctors, places to find food, get the car serviced, get dental work. Hey, no problem for us seasoned PD people. Right? Right? Is that laughter I hear?
(If my wife reads this, I think she will call our son and they will have me committed. Definitely take away my car keys! Or my computer keyboard! I am having fun writing this.)
Let’s see. 1. PD Olympics. 2022? Or 2. Figuring out what to eat tomorrow and when to eat either before or after taking my meds so they will still work? Oh no, I can’t decide what to do! Too many choices! Ahh! Now, where did my wife get off too? Thank goodness she is really good at deciding what we really should be doing today.
Us PD people can still dream!
PS. I have had to recently retire three years earlier than my Plan A because of my PD version. That is why I am trying to figure out what I can easily do now that my PD version is participating in my day to day life. Being an Olympian was one of the first things that came to mind. I know some of you old hand PD people are laughing at me because I am probably so late with coming upon this obvious thought. Please give me a little slack. I only got my PD pillow gift a few years ago. I am still discovering all wonderful things that comes with it.
Best regards,
Robert C.
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Haven’t yet read my someone mention hives. When at the end of my tether with body pain and physical exhaustion because I’ve pushed myself to get things done — I break out in hives around my waist. These form a belt of small to medium large, extremely itchy welts completely encircling me all of a sudden at end of day. Happens most often the day we cook twice monthly for the homeless shelter when before or after I gardened, cleaned or shopped at a large retail store such as Costco or HomeDepot.
Along with PD I have a “severe” lower spine issue along with body wide arthritis and a multi-fused neck. Generally the hives are gone by the next day if I was able to sleep well yet my legs are worthless for another day or two. Clearly this can’t solely be blamed on PD alone but it is brand new and very annoying. Sometimes don’t all of us just wonder, “Where did my former self go?”
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Tongue tremor! So annoying and embarrassing! My doctor never heard of it. I’ve had it for 3 years and wonder if it isn’t related to the carbidopa/levodopa I take.
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