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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!

    • #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?

    • #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 ?

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