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What are your worries about your Parkinson's disease?

Recently, Emma shared about some of fears she feels about her Parkinson's. We wanted to open a space for you to discuss your fears with one another, so you can hear from people that get it. What are your worries about your Parkinson's disease?

  1. So far (4 years post diagnosis) PD has been a walk in the park. Yes, I've had the tremor and the constipation, and the fatigue and loss in executive function that have caused me to quit working, but these haven't been too troubling. The first symptom to really bother and embarrass me is hyperhydrosis. With the lightest exertion, I begin to sweat profusely until water drips off my body, I'm short of breath, and my face is beat red. It is really unpleasant (I hate sweating) not to mention embarrassing. If I exercise in the pool, I seem to be okay, but the other exercise which I know is important just isn't happening because the hyperhydrosis is is so unpleasant.

    1. No need to apologize, @shamsa. Your feelings are certainly valid. Really appreciate you listing out some practical tips. I hope others find them helpful! - Chris, Team

    2. I feel great depths of sharing from each of you and appreciate it. Our individual worries are varied, much like the disease itself. I sincerely don’t like the idea of dementia so I’d say that is my biggest worry. Like some of you stated, I try to focus on the present and the positive as much as possible to keep that and other worries at bay. I am fortunate to have a caring spouse, many friends, and a strong desire to focus on mind, body and spirit. One thing I want to mention in case it helps someone worry less (like it helps me) - when I’m down I reach out to help someone. It helps me get out of my doldrums. It helps them. It is win-win! It is not always easy, but just like when I eat well and exercise well, it feels great once I’ve done it. ~Lorraine, moderator

  2. I feel that God has blessed me with new friends and a different outlook on life. I’ve accepted the diagnosis with the determination that I will see this as a gift and put myself in His hands.
    My symptoms are manageable now and I exercise three times a week.

    1. Great perspective, @Paulafournier. Thanks so much for sharing. - Chris, Team

  3. My personal greatest fear is getting to the stage where I can't swallow and begin to aspirate (inhale) my food, leading to pneumonia. I've read about this, apparently it's a thing, and for some reason it's the scary potential outcome which scares me the most. Although there are plenty to choose from!

    Having shared that, I should say that currently I am in the very early stages of PD and so far it's just a mild inconvenience and slight embarrassment.

    I'm generally pleased that I have accepted the diagnosis without much wailing of "oh why me?"
    After all, we are all living finite lives, bound to tail off somehow, it's just that the future trajectory of my own is now a bit clearer.

    I try to live without hope or fear. With so much research going on, perhaps an effective treatment will become available in time to help me. Or who knows, perhaps I'll be knocked off this mortal coil by some totally unrelated cause before the Parkinson's has time to do it's stuff. We just never know!

    1. My biggest fear is being forced to live when my quality of life is not what I feel is worth living. I want laws to change for death with dignity before that time comes for me. I don't feel having someone wipe my ass for me, bath me, and feed me is a quality of life worth living. I hope the laws get changed to include Parkinson's and other degenerative neurological diseases to be included in death with dignity as well as more states and countries adapting these laws.

      1. I dread this! What if I can’t communicate? What if I need physical care that humiliates me and makes me not want to live? What if I have dementia and the world doesn’t make sense to me? What if I’m trapped my body and want to escape it...but I CAN’T?

        Being powerless to end my life if I hate it and have no more joy or pleasure, and am no use to anyone...

        This is my biggest fear. And yes. It goes through my mind endlessly when I can’t sleep.

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