“I fight for my health every day in ways that most people don’t understand. I’m not lazy. I’m a warrior!” – unknown
Parkinson’s Disease (PD) is a disease of loss. It chips away one’s ability to perform seemingly mindless tasks.
This article first appeared on 3/26/2019 at:
Examples of what I have lost to Parkinson’s Disease
The list of things I can no longer do, or no longer do without a lot of effort may seem inconsequential:
- Putting a letter or a card in an envelope
- Keeping a slipper or clog on my left foot
- Opening a sealed envelope
- Picking up a thread on the floor
- Turning the pages of a book.
- Tying my shoes
- Rolling over in bed or on the floor
- Opening up packages
- Shaving underarms
- Rolling a yoga mat
- Folding laundry
- Washing the hair on the left side of my head
- Holding a handbag close to the left side of my body
- Finding the edge of the toilet paper on the roll
- Slipping on a sports bra
- Trying to put on pants while standing on one leg
- Putting on pierced earrings
- Write legibly
- Being able to walk without fear of my left foot dragging and tripping me
“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” – Carmen Ambrosio
What is the most troubling loss for me?
A more disturbing concern is that I can’t be trusted to hold on to something firmly with my left hand, whether that is holding a cup of coffee or giving my rabbit his medication.
As an example, while giving medicine to my bunny; I was holding the bottle in my left hand, and used an eyedropper with my right hand to administer the medication. Next thing I know, I look down and see pink medicine all over my rabbit’s fur. I was not even aware my left hand was tipping the bottle. So, not only did I waste the medicine, I had to clean the rabbit.
I once spilled hot paraffin wax all over the kitchen floor, counter and cabinets because I could not hold on to the paraffin container while trying to empty it. It took me almost two hours to clean up the mess.
The loss of my left-handed grip is a problem in itself, however, the extra work/cleanup I have to do when it fails me is even more troublesome.
PD is progressive
Just when I think I can deal with what I have lost, something else that I used to perform with ease now eludes me. It almost feels like a death by a thousand paper cuts.
While the loss of the ability to perform each activity in itself is no big deal, it is the daily, collective and continuing loss of other activities that serve as a constant reminder that I have an incurable and progressive disease. Day after day, this wears me down and it seems the list of lost functionalities grows on a monthly basis.
“Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.” – Kelly Hemingway
What’s the big deal?
While it may be easy to find a work around now, PD is relentless and some day it may come to the point where I don’t have an alternative way to accomplish a task. This is when independence is lost and being faced with new failings every day, no matter how insignificant is daunting and can fuel a sense of despair and hopelessness.
How can I best combat PD?
Keeping my sense of humor about some of the ridiculous things PD does to my body will be my salvation. Laughter will be one of the most effective weapons in my arsenal while I battle this insidious disease.
“You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” – Josh Shipp