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    • #23303
      Mary Beth Skylis
      Moderator

      The odd thing about Parkinson’s disease is that it varies so greatly from person to person. While there are a common list of symptoms that many PWP have, some are weirder than others. What you’re weirdest symptom? Do you think it’s related to Parkinson’s? Or could it be something else entirely?

    • #23781
      Kim
      Participant

      For years before I was diagnosed with Parkinson’s I would get this sensation in my head like I was underwater— I guess it was kind of like a muffled sound it’s very hard to describe— it would not last long several minutes maybe—and I still get them.  I still do not know what it means and won’t even bother asking the doctor about. As I don’t get tremors, it took a long time to be diagnosed. Just glad I persisted and didn’t resort to “talk therapy” as 2 doctors recommended.

      • #23989
        Barbara Ford
        Participant

        Kim, could this be what my neurologist calls “brain fog”? It was being caused by taking Clonazapam after the age of 70.

    • #23902
      Frank Mundo
      Participant

      My weirdest symptom:

      It’s been 8 years since I was “diagnosed” with Parkinsons (at age 68).  A recent symptom that appears only when I am lying on my back going to sleep at night (and have taken my 9:00 pm dose of Rytary) is what I can best discribe as a tickling, cold numb feeling that starts in the middle of my back and radiates in a wave like fashion down to my feet at a speed similar to a scanner on a fax machine.  This goes on for a minute or two and then goes away.

    • #23903
      Ron Lusk
      Participant

      Mine is neck pain from sleeping all night with a CPAP and not moving

    • #23907
      Troy
      Participant

      Tiptoes. Sometimes I just go up on my tiptoes while I’m standing and sometimes after sitting for a while, I’ll get up and my right foot will be on tiptoe while my left foot will be mostly normal. Sometimes it only lasts a moment, but I’ve had it last almost an hour. Don’t know if it’s dystonia related, but I also have typical dystonia in my hands- both issues are PD related. I’ve met another PWP who does the tiptoe thing too.

      • #23920
        Mary Beth Skylis
        Moderator

        Troy, that’s pretty wild. Is that something that happens on a daily basis?

        • #23943
          Troy
          Participant

          Hi Mary Beth,

          If I’m taking my levodopa regularly, I’m usually ok. If I forget a few pills or I’m in a stressful situation or stiff (from sitting a long time), it’ll happen even when I’m on my regular dose.

    • #23915
      Bob Hodgson
      Participant

      I get a toe cramp on the left foot for 15 minutes in the morning and then no cramping the remainder of the day. The most bothersome side affect is some dyskinesia in my legs. I call it my “stroke legs”. Anywhere from 30 minutes to several hours during the day. My right leg wants to go sideways.

      • #23918
        Mary Beth Skylis
        Moderator

        Thank you for sharing, Bob! I know my dad struggles with cramping, too. But it’s a little more consistent for him. He told me that he’s been taking magnesium to help, which seems to be making a difference. Have you talked to your doctor about that particular symptom?

    • #23926
      Clive Varejes
      Participant

      Hi Kim,

      I’m not sure if ours is the same, but I get that sort of feeling as well, but mine is almost as if a hot “wind” was blowing through my head, and sounds became muffled and everything became blurred. I initially thought it was a symptom of migraines.

      It was finally found to be a symptom of seizures. I have “complex partial seizures of the left temporal lobe”, yea, I know it’s a mouthful, but that’s the technical term.

      It is not as bad as epilipsy but a sort of first cousin. B-)   …    Luckily it is and has been under control for some time now.

      Of course, as soon as that gets under control, PD happens.  Someone is out there to get me. I must start looking around for Voodoo dolls that look like me and have pins sticking in them.   At least I can laugh about it.

      Kim, perhaps let them look for that.

       

    • #23927
      Clive Varejes
      Participant

      Mary Beth, I have a very weird symptom, which is in all probability not related to PD, and everyone is going to think I’m nuts however as you will not be the first ones to totally believe so, I’m going to mention it anyway.

      Ever since I was in my late teens, I used to enjoy coffee, which I drink black and with no sugar, usually espresso. I always had one first thing in the morning and another 2 or 3 during the day.

      I have a Swiss Nivona, bean based coffee machine, which allows you to make espresso, latte, cappuccino, etc. The reason I mention the machine is because about 2 years ago, now that I think about it, just before I was diagnosed, I started disliking the taste of coffee. I tried all the varients to no avail.

      After that lengthy and totally unnessary description , could this be a symptom of the PD?

      • #23928
        Troy
        Participant

        Hi Clive,

        The same exact thing has happened to me WITH coffee; same year as diagnoses. I did chalk it up to PD because I have read of similar things happening to others (can’t remember if it was coffee). A coffee drinker my entire adult life, I now choke it down in the morning and then drink tea the rest of the day. There are other drinks/foods that I am passionate about that no longer interest me 🙁  Don’t know if it’s due to loss of smell, but I have lost 9 pounds over the past 6 months, so it’s quite noticeable.

      • #23932
        Ally
        Keymaster

        Hi Clive, it could be related! Check out this article for more information about changes to smell and taste.

         

         

      • #23961
        Wobblygirl
        Participant

        I can’t eat chocolate. I used to love it and I’m still tempted from time to time – but it just makes me feel sick. Also I seem to sneeze a lot. It’s a bit embarrassing in these Covid times.

        PS I’ve just read further down and discovered a fellow ex chocaholic. My sense of smell is excellent and I enjoy the rest of my food.

         

         

        • This reply was modified 6 days, 23 hours ago by Wobblygirl.
    • #23930
      Katherine
      Participant

      Hiccups

      • #23931
        Ally
        Keymaster

        Hi Katherine, how did you make the connection between hiccups and your PD diagnosis? Has your care provider seen this in other patients or is it a hunch? Thanks for sharing!

        • #23939
          Leslie
          Participant

          Eat a spoonful of peanut butter and that should stop an episode. 

    • #23936
      Clive Varejes
      Participant

      Hi Ally,

      Thanks for the info, the article was interesting. The loss of taste, smell etc symptoms seems very like the symptoms experienced by those who contracted covid badly. I wonder if one or two of the receptors are affected the same way.

      However my senses of taste and smell are still good, it’s simply that I just do not enjoy the taste of coffee at all any longer.

    • #23937
      Clive Varejes
      Participant

      Hi Troy,

      Thank you for your reply, it fits with my coffee dislike perfectly.

      However what annoys me even more is the fact that I have started disliking the taste of chocolate like Lindt, Toblerone, Ferrero Rocher, Lindt & Sprüngli, Toblerone, Cadbury .

      At times I cry myself to sleep…………..

       

      • #23944
        Troy
        Participant

        Hi Clive,

        I’m sorry- stay strong. I have noticed that while some senses are being impacted negatively, I do have a heightened sense of creativity, which is a positive.

      • #23954
        Ally
        Keymaster

        Clive, that made me cry a little bit too. 🙁 If you have any Toblerone or other chocolates that need to be taken off your hands, I will volunteer to eat them. You’ll have to twist my arm, but I’ll do it. 😉

    • #23938
      Sharon Vander Zyl
      Participant

      My husband’s wierdest symptom is sweating on his forearms and trunk at certain temperatures–usually around 50 degrees farenheit. When it happens he has had to change shirts 4-5 times a day. They are drenched when he takes them off.

    • #23940
      Clive Varejes
      Participant

      Hi Troy,

      Sorry I missed your loss of weight syndrome.

      No I haven’t had that problem at all.

    • #23934
      Alan Berry
      Participant

      Every day I get a pain in my right arm. Above my elbow and up into my shoulder. It is a constant pain, not intermittent.

      Alan Berry

    • #23945
      Clive Varejes
      Participant

      Hi Troy,

      That heightened creativity really is a plus.

      Being able to sketch, or paint or create someting must give you an enormous sense of pleasure and achievement.

      Unfortunately I have always had a problem even drawing a straight line with a ruler so that is a no go for me, but it does cause an inordinate sense of amusement to my so called nearest and dearest. Unfortunately there are no laughing icons on the site so you’ll just have to imagine me laughing.

      As regards the crying myself to sleep, it is only because of the lack of chocolate, although I must admit I do occassionally grab a bite of one or two, just to find out if my taste buds have regained their sense of logic. Thus far no, but I shall not give up…………….

      B-)

      B-)

      🙂

      • #23946
        Troy
        Participant

        Hi Clive!

        🙂 I can’t draw either. I’d love to paint, but I just can’t. I do create music and I am a drummer (despite my lack of coordination). I can still drum, but I’m noticing that now my hands start to cramp/tighten up while doing so. But as long as I can push buttons on my computer, I will attempt to create! I may write a gut-wrenching ballad inspired by your love for chocolate…

    • #23947
      GD
      Participant

       

      Almost very night,  just before falling asleep, for a minute or two I suddenly feel overwhelmingly cold, even with the use of an electric mattress pad.  I must cover myself completely, so not even my face and hands are exposed.  This intense cold feeling lasts for several minutes then I shake and twitch two or three times before finally falling asleep.   (I believe this is not simply restless leg syndrome because my entire body tremors.)  In the early morning I awaken feeling hot and sweaty, as though with hot flashes, and must throw off the bedcovers and turn off the electric pad.

      Does anyone else get these feelings?  Are they Parkinson’s related?  I cam’t discuss this with my doctor because I don’t have one at this time. ( I’m waiting for a new doctor to contact me with an appointment.)  This has been occurring for the past several years, even before my diagnosis about five years ago.  I’m 81 and female.

    • #23951
      Trish K
      Participant

      Any amount of amantadine makes me stutter.  My neurologist who is 70, msyo clinic doc all thought it was weird too

    • #23956
      Bob Duman
      Participant

      Weird Symptom #1:  I have a real feeling that when my wife goes to the store, that my daughter Kate, who lives in Berlin, Germany, is going with her.  I have even called Beth (my wife) on her cell phone to tell my daughter something , and don’t realize until it’s ringing that my Daughter (and granddaughter) aren’t really with Beth, or even in this coountry .  This effect began around the same time that I was diagnosed w/PD.

      Weird Symptom #2: When I am typpping, I tend to hit doublwe and triple keystrokes, as well asnovel phonetic spellings of underlying words.

      Weird Symptom #3: My ability to get sexually aroused will get triggered by something, I know not what, and I can get fully aroused in minutes.  Other times, I could have an erotic image or video in front of me and I get no response at all.

      Weird Symptom #4:  I  just can’t see something I’ve lost when I’m looking right at it.  Beth could be working at her compputer, and I DO NOT SEE her.  This started happening several years before I was diagnosed.  My glasses get lost 3-4 times a day because I just don’t see them!

      Thanks,

      DrummerBob

       

    • #23957
      SUZANNE ALOISIO
      Participant

      My husband leans to the right, especially when he is tired or during off times, even running into the curb when we are walking. His neurologist said not to worry about it if he wasn’t showing signs of stroke. I Googled leaning and Parkinsons’ and discovered something called “Pisa Syndrome” associated with PD and other neurological disorders. But I got conflicting info: caused by PD meds or improved with PD meds. Has anyone else had this symptom?

    • #23982
      Toni Shapiro
      Participant

      My startle reflex is off the charts.  I can not control it and it causes me much embarassment.  I have had if for a long time, especially so since my PD diagnosis and it is getting much worse. It doesn’t matter if I am having a series of good days or bad days and  I have no issues with my meds. I make startle like noises with varying degrees of loudness. The loudness of my screams and the body shakes that come with my reflex doesn’t seem to follow a pattern in that I can scream loudly at just dropping a pen and have a lesser noise response to someone coming up behind me.

      If my husband comes into the room I let out a scream, if a gun goes off on television I scream, if someone gets off the elevator while I am waiting for it I scream, if someone comes up behind me I scream, if I drop something I scream. If I almost drop something I scream. Last night I yelled so loudly at a bomb going off on a  tv show that my husband thought the neighbors below us would call the police LOL. Today I dropped a piece of paper and screamed loudly. It feels like my heart is beating a mile a minute when it happens.

      I would greatly appreciate it if someone experiences this, or even remotely like this, if you could please reply to this thread.  Thank you.

       

      • #23986
        Troy
        Participant

        Hi Toni,

        Yes- I have developed the wild startle reflex as well. Crossing paths with people unexpectedly, dropped silverware, etc. The worst is any kind of “out of the ordinary” noise if I’m asleep or close to asleep on the couch. I jump and all four limbs reach for the sky, like babies do when they are awoken out of a deep sleep. It’s quite incredible and sometimes entertaining for the rest of the family (who feels bad, but can’t help but be amused). As long as my heart holds up!!!

        • #24003
          twok
          Participant

          Strong startle reflex both before diagnosis and now…entertains my family.

    • #23983
      Clive Varejes
      Participant

      Hi Troy,

       

      Please don’t keep today ballet to yourself.

      Love to hear the wailing and gnashing of teeth.

      • #23984
        Troy
        Participant

        You got it!

    • #23988
      Troy
      Participant

      On the topic of strange symptoms, is anyone dealing with excessively oily skin? I started dealing with this last summer and found that it is indeed a common PD symptom (I have early onset). It’s mostly around my eyes and then gets in my eyes, which is awesome. I use witch hazel throughout the day and I’m trying a special soap which is drying out my skin, but not stopping the oil 🙂 In the immortal words of Cosmo Kramer: “Look away…I’m hideous.” Coincidentally, yesterday I spoke with a woman whose late husband had PD and the same exact symptom. He used witch hazel too. It’s all so strange.

    • #23990
      Gauri
      Participant

      My weirdest symptom is depression and reckless actions out of frustration.  I keep awake until midnight involved in sexting with my boyfriend and do not fall asleep even though I might be sleepy.  This happens because of the need for sexual arousal which is not getting fulfilled by my husband

    • #24000
      Clive Varejes
      Participant

      Hi Gauri,

      Yea, that is very weird, are you sure this is a symptom of PD?

      I’ve never heard of it before, but perhaps someone on the group who has experienced something similar can help.

    • #24001
      Clive Varejes
      Participant

      Hi Bob,

      Yes, the keystroke situation I can identify with.

      I feel it is simply as a result of my slight tremors and either hit the wrong key, hit the same key twice, or simply miss one letter totally which I thought I had touched.

       

    • #24005
      Keith Beck
      Participant

      Someone mentioned hiccups…me,too. My MDS says it is definitely PD related. Also sneezing.

    • #24008
      Clive Varejes
      Participant

      Sorry Troy, how I typed ‘today’ instead of ‘the’, is a mystery.

      I can only put it down to old age. That’s my story and I’m sticking to it.

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