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How do you cope with the reality of having Parkinson’s? Does it comfort you to share details about your life and how the disease impacts you?
One thing I’ve noticed about my dad’s Parkinson’s experience is that he’s not very forthcoming about how it’s impacting him. When asked, he’ll tell you what he’s dealing with. But on a day to day basis, he keeps to himself. I think he may see it as withholding from complaining.
How do you cope with the reality of having Parkinson’s? Does it comfort you to share details about your life and how the disease impacts you?
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7 Replies
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I tell everyone (except my doctors) that “I’m fine,” even though I’m not fine. I think it’s because if I tell friends and family that I am not fine, they’ll feel guilty that they’re fine and I’m ill. Or they’ll feel guilty that they’re “”not doing enough,” even though they may be doing a lot. My motive for saying I am fine is to keep others from feeling bad.
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Well said, Josephine. I would *love* to talk more about my PD, but few people want to hear the woe-is-me stuff. I focus on the positive to, as you said, keep others from feeling bad. But I also do it because I want to be viewed as “me” and my entire personality, and not just “the guy with PD.”
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I’ve had a combination of so many symptoms over the years that I feel the need to bottle up everything to family and friends so I don’t come across as a hypochondriac. Hard to say the truth that I’m still devastated with finally getting the diagnosis. I’ve had to stop just about everything that I love doing. Feel bad for my wife as I’m unable to do simple things with her. I try to stay positive and being able to talk to someone who knows what I’m going through is very helpful. She tries to understand but it’s hard.
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I try not to say much to friends. I don’t want to be a complainer. I do find it a great help and comfort to have my PD Rock Steady Boxing group. We can tell each other what is going on and give advice without feeling we are complaining. They are vital to my well being and we enjoy each other as close friends.
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I am at an angry stage. I don’t have a good support system. I’ve been trying to get my family and friends on board but their lives are too busy. One of my friends with PD just hired someone 2 days a week and I think that is what I will do. I don’t want to burden anyone and I also don’t want to be along. Just trying to find balance. Not sure what I can afford to do.
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A lot of the time I’m in denial, fortunately for me my wife is a good listener. Everyone else I just say I’m fine.
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My wife and I don’t even try anymore because most people aren’t able to even comprehend what we go through. The few times we’ve tried it just left us feeling more isolated.
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Doug, I’m really sorry that sharing hasn’t been helpful for you and your wife. I wonder if my dad feels similarly. Have you been able to find a Parkinson-specific community like his one that helps? I know some community members participate in video chats, which seems to help.
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I tell people that the hardest thing I do every day is get out of bed. Then I explain what that means: In the morning, the meds are off and the legs don’t work right. I use my arms to roll out of bed and land on my knees. Now, facing the night stand I can push myself up onto my feet. Then I say my little mantra to myself: Today is the best day of the rest of my life. And I mean it, because every day I lose another little piece of myself. Then I do the Parky Shuffle to the bathroom and take care of pressing business, weigh, take my meds, and try to walk the kinks out of my back before braving the stairs down to the kitchen to get a little food before I urp up the meds I just took.All of this takes place in slow motion because without the meds, everything slows down. I can’t move fast enough to spring out of bed in the morning; I can’t build up enough momentum, so instead I let gravity do the work, which is why I land on my knees.
In a half-hour I am functioning more like a normal person, but without the meds I would be pretty close to a vegetable now.
People don’t get it. How could they? Even after caring for a father-in-law who had PD I didn’t get it; my wife didn’t get it. She, while incredibly supportive, still doesn’t get it anymore than I comprehend her own chronic disease.
As for comfort, yes, there is comfort in commiserating with a supportive person and sometimes with anyone who will listen. My wife and I journal. I have found it helpful to write about my experiences in my journal and we each share our entries every night. That is sometimes better than talk.
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Mary Beth,
Parkinson’s is tough. And it gets worse, harder not easier. My wife and I live with the struggles. We just travelled to Minnesota for our Grandson’s
wedding. It was a great ceremony but I struggle with finding joy in stuff. At 66 this condition has changed my perspective fairly dramatically. I do enjoy sharing in these forums. Thank-you all for sharing your experiences. Thank- you Mary-Beth for leading the Forums. My massage therapist suggested is there may be a time when I look back on Parkinson’s as a blip on my list of challenges. Blessings, Mike
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