Our Parkinson's Place: For Parkinson’s Patients, the Sense of Loss Is Relentless

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Tuesday, March 26, 2019

For Parkinson’s Patients, the Sense of Loss Is Relentless

MARCH 26, 2019 BY JEAN MELLANO

“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.

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 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 my 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
Writing legibly
Walking without fear of my left foot dragging and tripping me

“…[I]f 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 it is 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 looked down and saw pink medicine all over my rabbit’s fur. I was unaware that my left hand was tipping the bottle. So, not only did I waste the medicine, I also 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, but the extra work and cleanup I have to do when it fails me are even more troubling.

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 is no big deal, it is the daily, collective, and continuing loss of other activities that serves 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 workaround now, PD is relentless, and someday it may get to the point where I don’t have an alternative way to accomplish a task. This is when independence is lost. Facing 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

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

https://parkinsonsnewstoday.com/2019/03/26/parkinsons-patients-sense-loss-is-relentless/