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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. Hi Gretchen, that is awesome that you are able to find a booster for your blues with exercise! I find the same boost from exercise! I'm a care partner, along with my mother, for my 86 year old father with PD. I hope I'm an example to my dad to keep up his PT and walking to keep him going everyday! Keep up the awesome daily routine! Best regards, Suzanne Troy, ParkinsonsDisease.net moderator

    2. Increasing the exercise that you enjoy is beneficial for physical and mood enhancement. Continued success in your journey! Marc M., Moderator, ParkinsonsDisease.Net

  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, . Thanks so much for sharing. - Chris, ParkinsonsDisease.net Team

    2. Thank you for your comment. I share your outlook wholeheartedly. By putting yourself in the hands of the greatest doctor, a lot of the angst of dealing with PD is released. I wish you the very best.

  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. Hi 00mark, Thank you for voicing your concerns about swallowing and aspirating on food. I am a Speech Pathologist [SLP]. Make an appointment with a SLP, experienced with treatment for Dysphagia [swallowing] and Parkinson's for a Dysphagia evaluation and therapy. They can prescribe the safest diet consistency and give exercises for swallowing. Taking a swallowing test, called a modified barium swallow study [MBS], assesses your swallowing difficulty and helps the SLP to recommend the safest food and drinks.

    2. Thanks Marc, helpful advice.

  4. 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. Yes I have these things in place already. My concern is getting help from doctors to end my life when I have decided the quality is not humane and I wish to die with dignity. The other concern is my life insurance policies not paying out to my kids if they decide it to be classified as suicide. We need better laws for death with dignity and it needs to include progressive degenerative diseases and not just terminal diseases such as certain cancers.

    2. Hi - Thank you for sharing so candidly here. You bring up a lot of valid concerns when it comes to death with dignity, and I certainly understand your position on where you think the laws should change. If there are any additional resources you need, please reach out and we can connect you. Thanks for being part of the community. - Chris, ParkinsonsDisease.net Team

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