I'd like to introduce our guest blogger, John Binder.
John is a regular contributor to an online forum dedicated to those with Parkinson's Disease, along with caregivers for those with Parkinson's.
I see him frequently offering an encouraging and honest word to those of us who, like himself, suffer from this disease. Parkinson's Disease
wears many masks, and in this post, John does a good job uncovering them. Thank you for joining me, and John, thank you for your
permission to share.
Here's John:
I don't write, but I have Parkinson's. If I were a writer, I would tell the world Parkinson's sucks.
I would tell the world the life I used to live is gone. I would share that my wife, my son, my daughter and my grandchildren don't have
the same person in their lives that used to confidently play a strong role there. I would tell the world that I hate the way the meds make
me feel, the fatigue I experience every day, the confusion that snares my brain. I would tell them about the fear I experience in the midst of night terrors, the snarling nausea that greets me in the afternoon, the constipation that ties up my gut, and the loss of smell that cheats me of the joy of roses. Then there's the embarrassment I experience when the impatient clerk at the grocery store sighs as I fumble with a dollar bill, or the hurt that I really feel when I fall, or the self-consciousness I feel when I wonder who may be watching as I can't control the tremors at church.
So many symptoms, so much weakness, and so few answers.
I would explore the unfulfilled dreams that are scattered on the sands on beaches of what I expected my future would be. I would tell everyone that I am scared. Every moment, it seems that more of my savings are drained for another med, another treatment another doctor. I would confess that wheelchairs, nursing homes, dementia, helplessness, and uncertainty look a lot different to me now than they did before my diagnosis.
But, I'm not a writer, so I can't write about the new stronger inner self I've found. I can't tell of the determination I've uncovered. I can't begin to express my appreciation to all who have propped me up with encouragement, strength, understanding, love, hope, and assistance when I need it. I can't tell of the others in my boxing class who are better off, worse off or in the same place as I, who count on me for encouragement, a laugh or a gentle nudge.
Since I'm not a writer, no one will know that I'm proud of myself for digging deeper, finding donors to help fund PD research, pressing the local Parkinson's chapter to start a new local support group or, at 65 years of age, beginning a challenging, muscle-aching, exhausting boxing program. The world will not know of my new-found humility as a man who needs help taking off his own socks at night. Because I'm not a writer, I also can't tell you of my renewed love for my wife of 45 years.
I'm not a writer, but I live with Parkinson's. I couldn't possibly be objective.
Parkinson's sucks.
2 comments:
No one has to be a writer to express to others what they are going through on a day to day basis. By not being a writer your message comes from the heart and not from writing skills learner in a classroom. Your courage and determination has come through loud and clear. Others reading this will be inspired by you. God Bless and continue to be positive.
Karen F.
Wow - for not being a writer, you've quite eloquently showed us Parkinson's.
My mom has Parkinson's. My dad was her caregiver. But he died from cancer in just 3 weeks after being diagnosed. I lived with them for 7 weeks - before Dad passed, and after. Because there was no way my mom could live on her own. Even though she was convinced she could.
It became clear to her she couldn't, though. I couldn't stay with her forever. I have a special needs adult daughter and was living with my MIL at the time, who has Alzheimer's. My husband was able to take family leave to care for both of them while I was with my parents.
Parkinson's DOES suck. My mom is in assisted living - she lost her husband of 59 years AND her home in less than a month. She chose a place in their hometown because she didn't want to leave her friends and church and doctors. I don't blame her. But she's an hour and a half from me, so it's hard to get to her sometimes. My daughter's care comes first.
My MIL is now also in assisted living. And let me tell you, Alzheimer's also sucks.
But God is bigger. And this world is not all there is. PTL!
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