What has been your most difficult unseen symptom of PD?

Community Answers

  1. I would say Dystonia, Fatigue, and Depression. When the dystonia is bad sitting in a car is horrible. Or waking up with a stiff ankle and foot and the only way to make it better is to walk on it and stretch it out. Which starts the day off with pain. It also makes getting a shower hard to do. Re standing that long then expecting my right side to actually be helpful in washing my hair.
    Being tired from doing the simple things gets annoying. A day trip to my parents house that is an hour and a half away wears me out that I need the next day to recover. Also only being able to sleep 4 hours mad at a time keeps me tired and worn out. It is hard going to work full time, running a household on four hours of sleep. And when I try to sneak a nap in I feel like I am being lazy and should be getting more done. Oh and things take longer to get done. Like a chore a use to be able to do in 10 minutes now takes 30. I forget the amount of time it takes difference and my time management is off.
    The depression is good at pulling you down. And the panic attacks. The anxiety from work and the coworkers talking about me and how i shouldn’t be there, but also how I miss too many days of work. Busy stores and people grumbling cause I move to slow or I am too young to be parked in handicap parking.
    Ultimately, what has been the most difficult is losing the old me and having to accept the new me. I am not there yet.

  2. JennPatel says:

    Thanks so much for answering our Q&A, ParkiePrincess74, and I’m so sorry you’re going through this. I want to give you kudos for sharing about the effects of this condition and how you feel about them – it really helps because other people who are going through similar things can know that they’re not alone in it. Also, that sounds like a really tough work situation – it’s such a shame that your colleagues (as well as people in stores that you mentioned!) are not more understanding about Parkinson’s. Some people in the community find it helpful to share some of the articles with others, if it’s possible or appropriate, to help convey these issues to others who might not yet understand – totally just a suggestion, as that’s not always doable. But figured I’d throw it out there.

    Thanks again, so much, for sharing so honestly here. We’re really grateful to have you in this community!

    Jenn (ParkinsonsDisease.net Team)

  3. Ginanne says:

    Muscle pain in legs and inside my body trembling. Doing bills or checkbook I get fatigued and headache at the base of my head. Have to sleep and it goes away. Sometimes have to take an ansaid for this.

    I do rock steady boxing and it keeps me positive. It’s fun!

  4. Zsuzsa says:

    Nobody told me I’d have muscle pains. That started years before the tremors. Constipation and night incontinence are very difficult to manage, especially since I can’t swallow the big stool-softener pills.

  5. Courage says:

    Hi everyone. My muscle aches are helped by stretching multiple times a day. I use a whole body vibration machine and when my shoulders feel like I’m carrying them up around my ears I’ll use a tens massage unit.
    For the constipation, I take stool softeners daily (to much information???HAha.) I think those of us with PD get a pass on the warning about not taking them to frequently. At least I have my doctor’s blessing to do so.
    My toe curling and foot cramping (dystonia) responds well to c/l during the day. Toe curling is my cue that my dose is wearing off so I can take another before I’m stranded somewhere unable to walk. The nighttime dystonia in my legs is a whole other story. I deal with it by elbowing my husband saying “legs” and that’s his cue to jump up out of a dead sleep and get me magnesium and tonic water. While he’s doing his part I lie there with a death grip on my calves doing Lamaze breathing. Haha. Well maybe not exactly like Lamaze but very close. 🙂 Much more affective than drowning in a pool of tears cursing.
    Gabro-have you tried CBD oil for your pain and soreness? It’s worth a try.

  6. Gabro13 says:

    Fatigue, sore arms, inconsistent sleep. A couple things that are not invisible but no one notices is both my arms don’t swing when I walk and my walking pace is a lot slower with my left foot dragging on the ground. I just shake my head in disbelief sometimes when I might have a day where my tremors are mild so people will say oh I guess your Parkinson’s disease is good today because you aren’t shaking like normal. Meanwhile my arms are thriving with pain or soreness and I am having a hard time trying to talk and hold my head up among other things. As much as I try to educate people they just don’t seem to be listening. I guess they are to involved in there own lives.

  7. Chris H. moderator author says:

    That’s such a shame that people aren’t listening, Gabro13! I wish people were more understanding about the underlying symptoms of Parkinson’s. Thanks for taking the time to comment. – Chris, ParkinsonsDisease.net Team Member

  8. Chris H. moderator author says:

    Ugh, Courage! Those symptoms do sound really tough. Do you have ways any effective ways of how you manage these different symptoms? We’d love to hear more about it. Thanks so much for answering our Q&A! – Chris, ParkinsonsDisease.net Team Member

  9. Courage says:

    Muscle pain is the most draining. Constipation the most frustrating. Dystonia the most debilitating.

  10. Courage says:

    Oh and fatigue the most depressing.

  11. Chris H. moderator author says:

    Ugh, Courage! Those symptoms do sound really tough. Do you have ways any effective ways of how you manage these different symptoms? We’d love to hear more about it. Thanks so much for answering our Q&A! – Chris, ParkinsonsDisease.net Team Member

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