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    • #18998
      Mary Beth Skylis
      Moderator

      It can be difficult to determine which symptoms are associated with medications and which ones are associated with Parkinson’s. And, in my Dad’s case, he has two illnesses, which complicates everything further. Sometimes he gets strange swelling. Other times he experiences nausea. What is your most bizarre symptom? When did you start noticing it? And have you found ways to manage it?

    • #19190
      Marlene Donnelly
      Participant

      I understand about how two illnesses can complicate things. I have fibromyalgia as well as PD – there is always pain, but from which one? I gave up trying to match the symptoms with the illness and just look to treat the symptom as well as possible.

      As for my most bizarre symptom, I call this my PD perk. I have lost my sense of smell, but not to good things like food. I can’t smell stuff like poop. I can clean out the worst smelling cat boxes if someone will just tell me they need to be done. Same with cleaning up after the dog. When we ride down the road and my husband says, “Wow, that is a really awful smell,” he knows that I have no idea about that. I have had PD for over nine years, and this symptom probably showed up early on in this journey. As long as good smells still reach me, I am very happy with how things are!

    • #19197
      Jo S.
      Participant

      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).

    • #19199
      Marlene Donnelly
      Participant

      Jo, you struck a chord when you spoke of yelling and screaming some nights. I do that too on occasion. Usually it is in early morning, and often my husband is already up, so I don’t scare him, but he can hear me from the kitchen. I am invariably dreaming about teaching, something I did for about 33 years and loved doing. My dreams usually involve situations that I, thankfully, never really experienced. They are very stressful, and I wake up exhausted, after trying, in my dreams, to take care of situations that are out of my control.

    • #19202
      Toni Shapiro
      Participant

      Hi,

      Right now I am incredibly frustrated as I started this twice so far, writing quite a lot, only to have my catcher mit hands do something, I have no idea what, cause all my work to delete itself!!! Twice!! It takes so much time to try and redo things!! UGG!!  This is not even my bizarre symptom lol

      Like Jo S it’s hard to pick just one bizarre symptom.  I have a lot of them.  The one that causes me the most embarrassment is my way over the top startle reflex.  I stand in front of an elevator waiting for it to open and if someone is a bit to the side inside the elevator and steps out…I scream!  I lose balance and move backwards and my arms jump up in the air.  Usually seeing my embarrassment people laugh and make light of it saying something like they never thought they were so scary looking.  I do the same in my own condo that I share with my husband.  He will just walk into a room I am in and I will scream, (and I really do mean scream), shaking me up to the point of losing balance and him saying, “I live here!”.  It also happens watching a movie when some one gets shot, even though you can almost see it coming.  The other day I was napping with only the screen in the door near my bedroom. A neighbour came to the screen and called my name and I jumped from my sleep screaming and so startled.  (For years I have not been able to move my body that fast. Lol .) She was terrified something horrible had happened to me. That’s one of my bizarre symptoms.  Drama Queen startle reflex!

      • #19964
        becky bartlett
        Participant

        Marlene, I taught for 29 yeaes and anout once a weeek I am in some sort of classroom. Once, my students were trolls!

        Becky

         

    • #19204
      Jo S.
      Participant

      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).

    • #19205
      Mary Beth Skylis
      Moderator

      Toni,

      Your thoughts gave me a few laughs. It sounds like you’ve found ways to navigate the social situations you end up in. I give you props. I’ll have to come up with wittier responses to my own quirks. .

    • #19206
      Mary Beth Skylis
      Moderator

      I find this jumpiness very interesting. I’ve always been jumpy. Does it seem like it’s a reflex?

    • #19209
      Mary Beth Skylis
      Moderator

      Marlene,

      My Dad has both PD and Ulcerative Colitis. He isn’t a complainer, so I don’t really know how the diseases impact him on a daily basis. But I’ve always been interested in the relationship between the two.

    • #19220
      Don Weber
      Participant

      Marlene, I have migraines,arthritis,sleep problems(Use a CPAP),asthma, a pacemaker,and several orthopedic issues,and PD.  I have have screamed at my granddaughter that she was going to fall off the couch and hurt herself the problem is that she wasn’t at our house and was at school. I have seen people and heard things these people said at different times day and night and nobody is there. This problem also involves seeing things that are not there. these problems come and go.

    • #19237
      Elizabeth Olson
      Participant

      I often overheated without an elevated body temperature, like long lasting hot flashes.  Worse during hot weather but occurs year round.   I thought this might be a medication side effect but can find any correlation with timing.   I asked my doctor if this might be a Parkinson’s symptom and he said maybe.    Does anyone else experience this?

      • #21275
        Jennifer Blackstone
        Participant

        Eliz — I get hot flashes, too, and I am 12 yrs past menopause.  Thankfully, they are short and maybe only once a day.  Naturally, it happens right after I put on a sweater!

        My strangest symptom:   the top of my head itches all the time!.   I’ve had my internist, dermatologist and salon person look at the top of my scalp and nothing is detectible.  The itchiness started maybe a year or two before my first symptoms (13 years ago).  The only other guess isa pinched nerve somewhere.

        Does anyone have panic attacks that aren’t related to anxiety or worries?  The attacks started when I tried Rytary.  I had never had a panic attack prior.  After a month of using Rytary, I stopped — I could not tolerate it.  It is now a year later and I still get panic attacks every two or three days!!  I had more normal side effects like headaches, was hyperactive, overly-emotional and cried a lot, nauseous, and the constant smell of an electrical fire or tires burning.

    • #19247
      Garrett McAuliffe
      Participant

      I don’t know if it’s bizarre but I don’t know anyone else who has it. When I am off I can’t urinate. But it’s difficult to do on 80 now I have to go very badly. So I have to in the night walk up and down three flights of stairs in our house to get drafted you help me do that and then I’m able to go. I wonder if anyone else has hesitant urination.    It’s only bizarre because I don’t know if anyone else has it I’ve never seen it mentioned. When my meds are working,  I can urinate regularly.

      I can urinate regularly.

      I’m wondering, if people describing his symptoms mean when they’re in an off state or also when they are in an on state ?

      • #21264
        Sherri
        Participant

        Yes, I get terrible hot flashes. If it is hot it’s worse when it’s hot. I also get a feeling of being weak also. Just have to sit or lay down.

         

    • #19648
      Rob
      Participant

      I see that some people have TWO sets of symptoms. Is it possible to have two illnesses?

      I was diagnosed in 2005 with Parkinsons. I had a slight vibration in the right arm, had trouble with writing and typing. Everything else seemed mostly okay. Most of the clinical tests supported the diagnosis, and I have accepted it as my issue.

      But….  about 3 years ago, a new thing started to occur: In order of sequence it starts with a bizarre odour mostly, (but not always). That seems to be the trigger. Within seconds, I get a ringing in my ear, short shallow breaths, heart pulpitations and pain, watery eyes, stuffy nose, and then a stiff neck and an instant loss of all muscle strength, and I mean ALL. Even just sitting in a chair presents challenges with falling forward, and the rib cage pushes on the lungs, bladder drains. To finish, a feeling of being electricuted. I can literally see skin on the back of my hands vibrate, like there are 1,000 micro pins pushing from the inside.  TOTAL TIME: 4 to 6 minutes from start to finish. That usually lingers for about an hour to 90 minutes, then I can feel it going away, which takes about 30 minutes.

      At that point, I can stand up and walk away, as if nothing was  wrong. I have had medical professionals say *What?? That’s not Parkinson’s”. While this occurs, I lose all strength but movement, gait and speech are  all fine. I am able to do all clinical tasks with only muscle strength being the issue.

      What I find weird is the way this thing just washes on and off with such vigor. One minute, I am fine. Then I am not. Then I get up and walk away. It is creating skeptics that are questioning my integrity, and I can not say I blame them. I have had people say that it is all in my head, if so, how can I get it out of my head?

      • #21277
        Jennifer Blackstone
        Participant

        Rob — that sounds a bit like my panic attacks that started when I tried Rytary.  Mine are not so severe but last longer.  It starts with a clamping feeling on my diaphragm, especially if I’m sitting.  An attack always starts at the end of a dose or just when I take my next dose of sinemet, i.e. I’m tailing off.

        Following the diaphragm clamping, I start breathing heavily and cannot stand up due to dizziness.  If I don’t take an anxiety med by this point (within 15-30 min) it can really ramp up.  I feel my heart beating but the rate is ok.  I hear the ocean in my brain (blood pressure goes up).  , the rigidity/stiffness begins and pins/needles start in hands and feet and move up my limbs.  A bad one can last 2-3 hours and more anxiety med.  Twice in a year, I have had to go to the ER for stronger meds.

        We’ve ruled out a regular panic attack.  Can’t figure it out.

        • #21282
          Beth T Browne
          Participant

          I can not hand LevaDopa at all. My doctor gave me a bottle of Rytary. My anxiety got worse. I let her know and she said Rytary doesn’t cause anxiety, yet the pharmacy said it could, the written literature with it said it could, and my primary said it can cause anxiety. She got a little short and not to pleasant because I did not believe her. As she has really done nothing to help me, I see a new doctor next week. I want to ask him about a number of things people have tried that help. I am doing Mannital, 2 tsp, but started 3 today. On it about 3 months, so hoping to see something. I just started getting stiff neck so bad I can hardly lift my head up from my bad. I have osteoarthritis in my neck, hands, feet, etc but have been able to get it under control til this week. Could it be the Parkinson’s getting worse? I have had PD 2 yrs. I walk for exercise. I am 84. Hard to do a lot. Any suggestions appreciated. I have tried heat which usually helps, but not now.

          Beth

    • #19650
      Sheila Svoboda
      Participant

      I make vocalizations that I  can’t control.

    • #19924
      Anonymous
      Inactive

      Overeating is a big problem since diagnosis. Also I wake up in the morning with very oily face especially around my nose. And I have this wired eye twitch from time to time.

    • #19936
      William R
      Participant

      I have PIGD Parkinson’s disease – the nice thing is no tremor. I have trouble pivoting to the right. I mean I will go down everytime I try to picot to the right. It gets quite comical for my wife to watch me have to turn to the left even when turning to the right would be the logical choice. I also have primary Raynaud’s syndrome (it is idiopathic  – caused by an idiot) and living in Iowa is COLD which means I am COLD all the time. Should move, but children and grandchildren are here.  At any rate pivoting is a problem only to the right. Blurry vision is another symptom I could do without. Probably the strangest thing is my inability to gain weight. I have been at 170 pounds since my diagnosis 7 years ago. I guess I should feel lucky – but it is strange none the less.

      • This reply was modified 7 months, 1 week ago by William R.
    • #19938
      MW
      Participant

      My most bizarre symptom is my ability  to draw and paint as good as always, but my handwriting is totally unintelligible.   Being an artist, i consider this a blessing but very mysterious.   I don’t have any tremors but sometimes it feels like electric current throughout my body.

    • #19939
      Beth T Browne
      Participant

      Hi Mary Beth,

      Beth here again. As I have mentioned, was diagnoised in July. However, may have had it a year possibly, and did not know.

      Two weeks before Thanksgiving I lost my sense of taste. Can’t tell you how awful it has been, and I thought bizarre since I have not had this disease a long time, mostly tremors in my hands, and a little balance issues sometimes, but walking fairly well. I do sometimes have difficulty swallowing, and fighting constipation, but that has been an off and issue for years.

      I only weight 98 when diagnosed and have been small all my life. Now down to 93 due to nausea with the common drug they give when you brain show no Dopamine. My movement doctor said otherwise, the brain was fine, but obviously not now, with this lost of taste, which she said is common with this disease. I was tested for COVID, although I wasn’t sick, and I am negative. This was right after Thanksgiving.

      I can’t explain to my family why it is difficult to eat. I am constantly hungry, but when I try to eat, it taste so awful, I only take a few bites. I tried using various seasonings to no avail. I do drink some Ensure now, but can’t down an entire can in a day, or it sends me to the bathroom.

      My daughter has me taking green veggie and fruit gummies by Juice plus. Hoping it give me things I am not getting in a diet.

      I ask if anyone had any suggests a couple of weeks ago, I think it was, but heard nothing. Is this not a common thing with PD? Wish I understood why I am struggling with it and apparently there isn’t anything I can do.

      Thanks for listening.

      Beth

    • #20096
      Shelly
      Participant

      I have chest tremors. They make it feel like I am shivering, as my entire torso vibrates. They often wake me up in the middle of the night, and are quite disconcerting.

    • #20097
      Marlene Donnelly
      Participant

      Shelly, I also have chest tremors on occasion. mine are not as bad as yours – my entire torso does not vibrate, and they have never woken me up – but they definitely are disconcerting, much more so than the tremors in my right hand.

    • #20275
      Barbara Ford
      Participant

      Beth, I can relate to your issue of not being able to eat like I should. My sense of taste and smell are working, and even if it is a food I like, a few bites and I just can’t eat any more. Unfortunately, this does not extend to sweets!

      I do have digestive issues.  Everything appears normal to the doctors, but my lower intestine hurts, I feel extremely sick and my body aches. Sudden and extreme diarrhea will hit, and even if I am at home, often I cannot make it to the toilet. If I am not at home, sometimes I can find, and/or get to a toilet in time, but not always.  Once the attack has passed, I feel fine.

      does anyone else have this symptom?

      • #21252
        jeanne hofvendah
        Participant

        I was diagnosed a month ago but it’s moved at lightning speed. I just began having a head and shoulders tremor at times. It just gets weirder.

    • #20292
      Charles Schiller
      Participant

      Here’s one nobody has mentioned. Not to be gross, but often I’ll have very wide and long stools. No problem passing them but a lot of problems flushing them down. My GI doctor said might be caused by my meds. I take 15 pills a day for diabetes, two cardiac issues, Gerd, depression, high cholesterol, to name some. My PD doctor, MDS, said might be because my autonomic nervous system is no longer  rhythmic. Who knows?

       

       

       

    • #20314
      Marlene Donnelly
      Participant

      I never thought of this as a PD problem. Like you, Charles, I have many health issues and lots of daily medications. I was diagnosed with PD over 10 years ago, and for many years this was also part of my reality. Even had to have a plumber in on one occasion. The plumbing solution was to find a very long shoehorn and slice up the stool (of course then scrubbing the shoehorn squeaky clean!). Happily for me, my digestive system has changed and I no longer have this situation.

    • #20322
      John Carter
      Participant

      I was diagnosed with PD in early 2018 and began taking carbidopa levodopa. For the first 12 months or so, I wasn’t sure if it was helping or not. And then I begin to notice something strange (to me a at least). About an hour or so after taking carbidopa levodopa, I become somewhat disoriented with slurred speech; this seems to last up to, two hours. And about three hours after taking the dosage, I get back to “normal”. I have found that if I take a nap for about an hour after I take the pills, I get back to normal sooner (i.e., after about two hours). Also, if I get on my stationary bike for about 30 minutes as soon as I take the pills, I can get back to normal sooner. What is puzzling is why would the carbidopa levodopa cause these symptoms that are more associated with the need to take more carbidopa levodopa? It is as if the pills cause me to an
      “off” period before I can get back “on”.

      • #21251
        jeanne hofvendah
        Participant

        I’m new to this and I felt disoriented too after the med and thought it was a weird response. This whole thing is weird.  But I take it every four hours so there I go again. Looking forward to people’s response. I really need help getting through this by experienced people.

        • #21278
          John Carter
          Participant

          Jeanne, what I have been doing is to take my normal dosage at about 6 o’clock a.m.(2 CL pills). I then go back to sleep for about two hours. When I wake up, I feel pretty good; not wobbly. An ten o’clock, I take one tablet and do this every two hours until about 4 o’clock p.m. I’ve got a good doctor and he is okay with this approach. I try to maximize the amount of time between meals and taking CL using this schedule, but I don’t worry about the absorption. There are a lot of conflicting opinions on this and the most recent data I’ve seen suggests you do not have to worry about it. When I take my CL (it is an immediate release), I crunch tablets into a fine solution and then I swallow them with about 4-8 ounces of water. My doctor also suggested that I try Rytary as a substitute for CL. I have not done this yet. Well this strategy helps to minimize the wobbly feeling I get when I take two pills, it doesn’t always work out. When this happens, I skip a dosage and then get on my stationary bike for about 20 minutes or so. This seems to get me back on schedule (one pill every two hours). I am aware that the CL is benefiting me, particularly the slurring of my speech improves rather dramatically, but it certainly doesn’t do anything for my balance. On Some days, nothing seems to work, but the next day ‘ll have a good day?? Since there is so much variability in a Parky’s response to the different kinds of medication, I personally do not have any issues with a little experimenting.

    • #21253
      Barbara Ernest
      Participant

      Blood pressure variations during course of the day. Often very high first up in the morning before taking any PD meds. Sometimes after taking meds – so low that cannot even get a reading. Cardiologist said it is a very complicated issue not easily controlled. Overall average during course of the day is usually normal to low.Here is one example.

      152/101 @7:53 take first med at least 1/2 hour before breakfast

      64/47 @ 9:41am  take meds about an hour after breakfast

      80/49 @ 1:29pm about an hour after lunch

      121/68 @ 7:31pm about an hour after dinner

      average of four readings is 88/52

       

       

       

       

       

      Anyone else with such experience.

    • #21267
      Beata
      Participant

      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?

    • #21272
      Katherine
      Participant

      Hiccups!

      (Among another 20 – 25 other symptoms resulting from PD.) Someday maybe each of us could list them. It would be interesting to me.

    • #21279
      jeanne hofvendah
      Participant

      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>

    • #21286
      Robert
      Participant

      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.

    • #21271
      Simona MacAngus
      Participant

      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?”

    • #21313
      Evelyn Jane Graham
      Participant

      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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