Opinion: Help pass the National Plan to End Parkinson’s Act, Sen. Romney

More and more people are being diagnosed with Parkinson’s, and the cost to our communities is staggering.

(Alex Brandon | The Associated Press) Sen. Mitt Romney, R-Utah, speaks on Capitol Hill, Thursday, April 20, 2023, in Washington.

I was diagnosed with Parkinson’s disease on Oct. 16, 2018, at the age of 61. I was working at the time as an assistant professor of nursing for Nightingale College.

I have to confess that, even with my 39 years of nursing experience at the time, I had no idea how devastating life was for someone with Parkinson’s.

It took over two years of continual visits to the doctor and a barrage of tests to finally get a diagnosis. I was consumed with crushing fatigue, visual difficulties, loss of smell, difficulty walking, brain fog, struggles with balance and coordination, stomach pain, chronic constipation, stiffness, joint pain, tremors and repeated falls — one resulting in a concussion. I was continually anxious — at times panicky and filled with depression.

This is why I’m asking Sen. Mitt Romney and other officials in Congress to cosponsor the National Plan to End Parkinson’s Act, so that others don’t have to experience what I have.

I had no idea how far reaching the symptoms of Parkinson’s were. Everything that your brain controls is affected by Parkinson’s — and that means everything. People would comment, “You have Parkinson’s? But you look so good.” Unfortunately, most people only associate Parkinson’s disease with having a tremor. It isn’t until you have a loved one or a close friend with Parkinson’s that you begin to see how deeply one’s quality of life is impacted. I was humbled beyond words as I met person after person with this disease that currently has no cure.

I left my teaching position two years after I was diagnosed due to fatigue and mental exhaustion. I cried as I filed for disability benefits and requested a handicapped placard for parking. My life started slipping away piece by piece. It is heartbreaking to watch my vibrant personality change. My speech is slurred. I fear eating due to increased risk of choking or aspiration. My energy to engage in life is greatly depleted.

Conversations even become tiring. Today my life revolves around Parkinson’s. I attend physical therapy to keep myself fit. I box and do circuit training. I attend speech and language therapy to keep my voice and swallow strong. Regular neurology and movement disorder specialist visits are necessary to manage all the medications I take to increase dopamine — a neurotransmitter in my brain — that is lacking.

I am passionate about doing what I can in my lifetime to make a difference in the lives of those with Parkinson’s and to those at risk. Through support groups and therapy, I have met the most beautiful people who have become my Parkinson’s family. I would be lost without these resources and support. Continual accommodations are needed to function in the world because Parkinson’s easily strips you of your ability to enjoy life.

More and more people are being diagnosed with Parkinson’s, and the cost to our communities is staggering. Our resources are currently limited and — even as a healthcare professional — it has not been an easy system to navigate. Very often the doctors I see attribute everything to Parkinson’s but often with no (or a limited) real intervention to remedy the problem.

What is needed is early diagnosis and treatment. This is what I received when I was diagnosed with breast cancer this past September — doesn’t Parkinson’s deserve the same?

I will advocate for others as long as I am able because I care about each and every one of you. Sen. Romney: The Parkinson’s community in Utah needs your support on the National Plan to End Parkinson’s Act.

Karen Sincerbeaux

Karen Sincerbeaux lives in Ogden.

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