Parkinson’s News Forums Forums Living ​With​ ​Parkinson’s Symptoms and Progression Which Parkinson’s symptom bothers you the most?

Tagged: 

  • Which Parkinson’s symptom bothers you the most?

    Posted by Ally on July 25, 2023 at 5:14 pm

    Tremors, speech difficulties, bladder issues, and rigidity are just a few of the symptoms people with Parkinson’s experience. 

    Which Parkinson’s symptom bothers you the most? Why?

    John Wick replied 1 year, 6 months ago 21 Members · 23 Replies
  • 23 Replies
  • Cynthia

    Member
    July 27, 2023 at 10:29 am

    I asked my husband (3 1/2 years since diagnosed) about this. His main problem he says is with his bladder. Sometimes he has to get up 4 times a night and is very apprehensive when we go out anywhere. He takes Tamsulosin and Mirabegron which don’t seem to help. His other worry is his balance but tremors and speech aren’t bad (he daily does vocal exercises).

    • Tina

      Member
      July 27, 2023 at 4:47 pm

      For my husband, Orthostatic Hypotension and all the misery that come with it!

      • Liza

        Member
        August 1, 2023 at 4:37 pm

        Hypotension! My normal, functioning BP is 70s/40s. It goes down to the 50s. It is becoming more difficult to manage.

    • John Wick

      Member
      August 3, 2023 at 3:19 pm

      Tremors!! It’s a pain in the neck to be with anyone unless it’s explained to them ahead of time.

      Bob

  • Tammy

    Member
    July 27, 2023 at 2:14 pm

    My husband says the brain fog is the worst.  Have no idea how to help with that. Diagnosed 2014, he is now 55.

    • Alan M

      Member
      July 28, 2023 at 6:09 am

      I am the same as your hubby, Tammy.  My brain fog has the power to make me forget a lot of daily details.   Also, RBD (REM-SBD) causes me to struggle with EDS (excessive daytime sleeps) and leads to periods of excessive fatigue!

  • Annie

    Member
    July 27, 2023 at 2:14 pm

    So hard to tell – changes according to what’s annoying me most at the moment.
    Could be the broken sleep  – it’s 4:48am and I’ve given up for the night. It could be the unsteady and oh so very slow trek to the toilet overnight or first thing in the morning (will I make it?).
    Sometimes its the pain that I wake up with everyday- nothing particular just vaguely all over.
    Last night it could have been the difficulty I felt getting up from the sofa but it wasn’t too bad – I only took 3 or 4 tries.  When I was staying away from home I made the mistake of sitting on an unknown lounge and couldn’t get up. I ended up getting onto the floor and crawling to a solid chair to pull myself up.
    I hate moving in slow motion in the “off” times.
    Sometimes  it’s the grief I feel for things that I can no longer do – like work (I’m 55), many crafts that I used to enjoy, even feeding my cat is difficult.
    Sometimes it’s the sadness I see in the eyes of my Mother watching my difficulties when I catch her in an unguarded moment.
    It could be the fear of falling as I shuffle around my home, or try to shower before I need to go out but before the meds have kicked in (oh why didn’t I do it last night when I was “on”!?!). Could be the apathy that stopped me showering last night when I was “on” (but when the apathy hits, I really don’t care about anything so no, it couldn’t be that).
    It could be the lack of concentration that sees my mind drifting away from what I’d like to concentrate on (how long has it been since I read a book?).
    Well, it’s many things depending on what I’m doing (or unable to do) at the time. I do try to live in the moment and keep a sense of humour. It doesn’t always work and at this time of the day it’s particularly tough to feel positive.

    • Kristi LaMonica

      Member
      July 28, 2023 at 9:37 am

      Same, Annie. All the above plus the crushing fatigue. The unspecified, all over pain is the worst. Chewing between 1/2 and 1 1/2 immediate release carbidopa/levodopa is the only thing that helps.

      • Annie

        Member
        July 28, 2023 at 12:12 pm

        Wow Kristi – I know that it sounds stupid but I’ve never tried the immediate release carb/lev for pain! Although I do start my day with it and that’s often when the pain is worst. I  have it with me for when I slow to glacial speed, or my gait gets really bad. Thank you- I will be trying that when the pain gets too bad (which unfortunately won’t be too far away – guaranteed!).

      • timothy ross

        Member
        August 1, 2023 at 10:36 am

        Hi Kristi,
        You say ‘chewing’. You mean, literally, crushing between your molars? Does this make it work faster than just swallowing with water?
        How does this affect your eating time-table?

    • Barbara Ford

      Member
      August 2, 2023 at 4:25 am

      Annie, You are correct – it is difficult to name just one thing that bothers me, but instead it depends on what I am doing and how my body is responding to that action.

  • Karla Burkhart

    Member
    July 27, 2023 at 2:22 pm

    The stiffness is terrible! It makes me awkward and off balance. It also causes muscle spasms. I get so exhausted after a short time of activity even though I do intense exercise 3-4 times a week. As time goes on the fatigue is getting worse and worse. I feel like I’m encased in cement and I move like I’m 90, I am 79.

    • Joy

      Member
      August 2, 2023 at 9:14 am

      I’m just like you are, 79 and feel like 90. Stiff and off balance. Muscles spasms drive me crazy. I retired last year as an RN. Sometimes I get very down and think what this year holds for me. I’m a positive person but this has put me down. Parkinson’s has been with me for ten years.

  • Kevin McGuinness

    Member
    July 27, 2023 at 4:10 pm

    My balance and gate and of course fatigue.  I know these add up to three bothersome symptoms but combined they sure don’t make my day easier

  • Weigold Carol

    Member
    July 27, 2023 at 9:06 pm

    There are so many. The group of several symptoms working together keeping me from doing the things that I used to love.

    The lack/ loss of balance. The body tremors.
    Forgetfulness and brain fog. The change in my voice. The difficulty verbalizing my thoughts. Needing help showering and dressing due to balance issues. My inability to walk on my own due to gait issues and foot problems. Now I use a walker or go out in a wheelchair. The depression due to my anxiety and fear of my future. The burden I have put on my husband. The worry that I put myself through about my daughters not having a healthy and actively involved mom . Not being the kind of grandmother I had always looked forward to being.
    The new and unwanted symptoms that appear each week. The symptoms that have made it impossible to cook a large dinner for my family each week and do all the shopping and cooking for the meal. Now I need assistance standing in the kitchen and it takes me forever to chop one onion. The sadness I feel inside for everything I know I’m missing out on. I was diagnosed just 10 months ago at age 69.

    I could go on…

  • Donald Peterson

    Member
    July 27, 2023 at 10:42 pm

    Fatigue is the one that has been so difficult to deal with. Sometimes it hits just getting up from a chair. I breathe hard and feel like I have to sit down or I will fall. Uncomfortable to say the least. As a result I have not been able to do most of the activities I enjoy. And it is only going to get worse. Very depressing.

    • Annie

      Member
      July 27, 2023 at 11:08 pm

      Yes – absolutely! How do you make someone who doesn’t experience this understand though?
      I often feel as though those on the outside looking in often wonder if I pushed myself a bit harder, would it make a difference? And yet I do push myself as much and as hard as I can.

  • Brad Huotari

    Member
    July 28, 2023 at 9:38 am

    Before DBS surgery last August it was dystonia in my left foot and dyskinesia especially in the evenings. DBS eliminated both those side effects. Now it’s my inability to walk when I’m off my meds. I play golf 5 days a week to a 7 handicap which is exactly what I was before I was diagnosed in 2015. My other problem is getting up at night 3 or 4  times to go to the bathroom. I still run out of breath when I speak. I’m not complaining mind you 😉 I can live with the rest of the symptoms as long a can golf 5 days a week!

  • Ted Wilton

    Member
    July 28, 2023 at 12:12 pm

    Dizzy spells [perhaps caused by low blood pressure] and the so-called “goofy head” are most annoying to me, as both have hindered my mobility on uneven surfaces [I am a geologist, and this has essentially eliminated all of my field work now. As time advances these two symptoms seem to be getting routine, especially for the first few hours after I get up in the morning.

     

  • Joy

    Member
    July 31, 2023 at 9:22 am

    freezing followed by a fall is by far my worse symptom. I’m still working on trying to manage it with a physical therapist and exercises to increase my core strength. When I am alone I use urban poles for walking, I avoid crowded places as best I can and I try to  avoid those hard transitions like doorways and taking about face turns. When I am with someone I stay close enough to grab them if I freeze.

  • timothy ross

    Member
    August 1, 2023 at 10:44 am

    Feeling brain-foggedly stupid with serious loss of short-term memory, constipation, lethargy and having to push myself even to walk to the nearest shop, and having to leave so much for my wonderful wife to do.

    • Julianne Schell

      Member
      August 14, 2023 at 9:51 am

      My husband was diagnosed 2020. His main complaint is the dizziness.He has Orthostatic Hypotension. BP drops when he stands. He says if he looks up or sometimes turning his head causes him to get very dizzy. When he stands and is doing a task I notice his knees tend to buckle and I sometimes remind him to try and stand tall. Does anyone have burning in neck area when showering and getting dressed?Can anyone else relate to this?
      Praying so hard for a cure.

  • Deborah Moore

    Member
    August 1, 2023 at 8:37 pm

    I hate the cramping of muscles, the constipation that I suffer from. I’m having more frequent off times. Also sleep disturbances, waking up in the middle of the night. Hate it!

  • Susan G

    Member
    August 2, 2023 at 9:13 am

    Balance! Difficulty navigating uneven ground, going down stairs and getting out of a boat onto a dock when it is windy and the dock is moving.

  • Darrell

    Member
    August 4, 2023 at 9:09 am

    Bladder issues and leg pain/stiffness are my most annoying symptoms. I don’t mind the sleep issues too much because I’m retired now (early retirement, I’m 57) and I can catch up on sleep anytime, all the other symptoms can be bothersome too tho like dry eyes, dry mouth, fatigue, apathy, brain fog, tremors. It certainly slows your life down to a crawl!

Log in to reply.