• What’s your weirdest symptom?

    Posted by Mary Beth Skylis on March 14, 2022 at 10:14 am

    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?

    John Sanchelli replied 1 year, 9 months ago 39 Members · 86 Replies
  • 86 Replies
  • Kim

    Member
    April 18, 2022 at 2:43 pm

    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.

    • Barbara Ford

      Member
      May 17, 2022 at 4:46 pm

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

  • Frank Mundo

    Member
    May 5, 2022 at 10:38 am

    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.

  • Ron Lusk

    Member
    May 5, 2022 at 2:37 pm

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

  • Troy

    Member
    May 5, 2022 at 3:22 pm

    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.

    • Mary Beth Skylis

      Moderator
      May 8, 2022 at 5:53 pm

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

      • Troy

        Member
        May 11, 2022 at 10:18 am

        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.

  • Bob Hodgson

    Member
    May 6, 2022 at 6:58 pm

    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.

    • Mary Beth Skylis

      Moderator
      May 6, 2022 at 7:08 pm

      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?

  • Clive Varejes

    Member
    May 10, 2022 at 10:03 am

    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.

     

  • Clive Varejes

    Member
    May 10, 2022 at 10:23 am

    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?

    • Troy

      Member
      May 10, 2022 at 11:25 am

      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.

    • Ally

      Moderator
      May 10, 2022 at 4:29 pm

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

       

       

    • Wobblygirl

      Member
      May 12, 2022 at 6:09 pm

      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.

       

       

  • Katherine

    Member
    May 10, 2022 at 3:11 pm

    Hiccups

    • Ally

      Moderator
      May 10, 2022 at 4:28 pm

      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!

      • Leslie

        Member
        May 11, 2022 at 6:24 am

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

  • Clive Varejes

    Member
    May 11, 2022 at 1:37 am

    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.

    • Mary Beth Skylis

      Moderator
      May 27, 2022 at 10:35 am

      Clive, I think my dad has experienced this, too. But we haven’t figure out why. How do you feel about losing your love of coffee?

  • Clive Varejes

    Member
    May 11, 2022 at 1:43 am

    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…………..

     

    • Troy

      Member
      May 11, 2022 at 10:23 am

      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.

    • Ally

      Moderator
      May 12, 2022 at 3:29 pm

      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. 😉

  • Sharon Vander Zyl

    Member
    May 11, 2022 at 5:57 am

    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.

  • Clive Varejes

    Member
    May 11, 2022 at 6:25 am

    Hi Troy,

    Sorry I missed your loss of weight syndrome.

    No I haven’t had that problem at all.

  • Alan Berry

    Member
    May 11, 2022 at 9:06 am

    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

    • Mary Beth Skylis

      Moderator
      May 27, 2022 at 10:36 am

      I’m sorry to hear about your pain, Alan. My dad struggles with pain in his neck, but we think it’s probably related to an injury he suffered from earlier in his life. Have you found any good ways to manage the pain?

  • Clive Varejes

    Member
    May 11, 2022 at 11:22 am

    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-)

    🙂

    • Troy

      Member
      May 11, 2022 at 11:31 am

      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…

  • GD

    Member
    May 11, 2022 at 3:36 pm

     

    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.

  • Trish K

    Member
    May 12, 2022 at 2:01 pm

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

  • Bob Duman

    Member
    May 12, 2022 at 3:46 pm

    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

     

    • Mary Beth Skylis

      Moderator
      May 27, 2022 at 10:37 am

      Bob, it sounds like some of those symptoms could be really scary. How are you feeling these days?

  • SUZANNE ALOISIO

    Member
    May 12, 2022 at 4:23 pm

    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?

  • Toni Shapiro

    Member
    May 16, 2022 at 12:52 pm

    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.

     

    • Troy

      Member
      May 17, 2022 at 10:55 am

      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!!!

      • twok

        Member
        May 18, 2022 at 9:51 am

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

    • William Palmer

      Member
      May 24, 2022 at 3:34 pm

      I flinch now when my wife coughs or sneezes. Even when she puts a teacup down on the granite counter, I flinch. My flinching has become a habit. It’s not good for our relationship.

  • Clive Varejes

    Member
    May 17, 2022 at 6:08 am

    Hi Troy,

     

    Please don’t keep today ballet to yourself.

    Love to hear the wailing and gnashing of teeth.

    • Troy

      Member
      May 17, 2022 at 10:44 am

      You got it!

  • Troy

    Member
    May 17, 2022 at 3:09 pm

    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.

    • Shelly

      Member
      May 25, 2022 at 8:15 am

      It is a pretty common symptom, and has been bothering me lately as well.

      https://parkinsonsnewstoday.com/2021/03/26/changes-sebum-skin-oil-compounds-may-detect-parkinsons-uk-study/

    • Troy

      Member
      September 25, 2022 at 4:04 pm

      Thought I would share an update with regard to this bothersome symptom: with excessive oil + flaking, mostly around my eyes/eyelids, I finally paired up with a dermatologist who is now treating me for the sebum and seborrheic dermatitis. She’s prescribed three topical solutions that I’ve just started using. If I see a drastic improvement, I’ll share the info. Keep up the good fight, everyone.

  • Gauri

    Member
    May 17, 2022 at 4:53 pm

    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

    • John Hamilton

      Member
      September 27, 2022 at 6:24 pm

      Thats weird I have the same thing I get aroused but never my wife, frustrating isn’t it.

       

  • Clive Varejes

    Member
    May 18, 2022 at 1:46 am

    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.

  • Clive Varejes

    Member
    May 18, 2022 at 1:53 am

    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.

     

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