A Little Stone Pebble
I never say bad words. You will never hear me curse. I never have. It’s just not who I am and not how my mama raised me. A bad word doesn’t feel right rolling off my tongue. It’s like a little stone pebble in an otherwise fine bowl of soup – out of place, jarring. But today, I make an exception. Parkinson’s Disease is bullshit.
A Progressive Brain Disorder With No Cure
You work your whole life and just when you should be able to enjoy your grandchildren, you get Parkinson’s. A disease with no cure and dated medication options that will leave you with a high chance of hallucinating. You have to choose. Do you want to take a lot of meds to walk and have very frightening hallucinations? Or do you want to limit your meds and be frozen in place without the ability to move but hallucinate less? Forget what you saw on the commercials – Nuplazid only works for some. It was not the wonder drug we desperately hoped it would be.
This progressive disease is brutal. It takes away all that it can little by little. For some it happens fast and life is short, and for others it happens slow and suffering is prolonged. Many live with this disease for over 20 years. My mom describes it as a roommate suddenly moving into your space that you never wanted. There is no amount of bargaining that can get them to leave.
Parkinson’s Disease is a brain disorder which causes dopamine levels to drop as a result of nerve cell damage. Scientists do not know why the nerve cells, or neurons, die. The result of this disease varies greatly from one person to the next. A Movement Disorder Specialist who works with many Parkinson’s patients once told us, “I can only answer your questions with what I have seen.” This is how elusive the disease can be. There is no textbook script that tells you what will happen, or when it will happen, with this disease. There’s no manual. It doesn’t work that way.
Kate Washington, author of Already Toast, writes, “Many Americans assume that Medicare will fill care gaps for elderly people who can’t afford long-term care, but Medicare addresses only strictly medical needs – not care assistance such as residential care, retrofitting a shower, or paying home-care attendants so that a family caregiver can go to work” (171). It’s me. I am “Many Americans.”
I wasn’t prepared in my 30’s with 3 school-age children to watch all the savings my parents had for care evaporate so quickly. Medicare was not something I had thought about. I am an educated person and I’m still confused about it honestly. I wasn’t prepared to feel like we are unable to get any help unless we have nothing, nothing that was worked for over a lifetime.
No land. No house. You might as well go ahead and get rid of your car and any other assets. Nothing if you want to qualify. While you stress and spend your own money it’s really hard not to become bitter toward all the people in this country who cheat the system and don’t work and get everything paid in full. People who take pride in working hard like my parents will lose everything to pay caregivers 24/7 and medical bills quickly sent to collections.
National Plan to End Parkinson’s Act
So why is Congress so slow to pass the National Plan to End Parkinson’s Act? It was introduced in 2022 as the first-ever legislation in Congress focusing on curing and preventing Parkinson’s. The Act would ensure quality care for the 500,000 Americans living with this nightmare diagnosis. Because diagnosis can be difficult, and many are never diagnosed, estimates are that 1 million Americans may actually have the disease today (National Institute of Neurological Disorders and Stroke). Despite this, the bill did not pass. It didn’t pass y’all. But, it has been reintroduced. October 25th is a day of action and advocacy.
Parkinson’s Disease is Bullshit
I’d like all those politicians to come job shadow for a day or two. I’ll let them restock the Depends after they figure out how to pay for them. I’ll let them argue with collections on the phone. They can tell me how to pay a bill with no money.
I’ll even let them clean the bathroom toilet several times after accidents, but only after they’ve washed all the clothes and dishes and changed the bedsheets. Next I’ll let them look over grocery receipts for not one, but two houses. Once they get the trash out, I’ll do my best to show them what stolen time looks like. Heavy sadness. Coping skills. Smiles front and center, tears on the drive home. Missed opportunities. Uncertain futures. High blood pressure from stress. Heart failure. Carelessness in a country that’s supposed to care. Difficulty finding resources while billions of dollars are sent abroad.
There’s only one way to say it. Parkinson’s Disease is bullshit. Forgive me mama, I had to let one slip.
“Parkinson’s Disease: Challenges, Progress, and Promise.” National Institute of Neurological Disorders and Stroke, National Institutes of Health (NIH), 30 Jan. 2023, www.ninds.nih.gov/current-research/focus-disorders/focus-parkinsons-disease-research/parkinsons-disease-challenges-progress-and-promise#:~:text=Approximately%20500%2C000%20Americans%20are%20diagnosed,1%20million%20Americans%20have%20PD.
Washington, Kate. Already Toast: Caregiving and Burnout in America. Beacon, 2021. https://www.shareasale.com/r.cfm?b=1535322&u=2319341&m=97137