Quality of Life

In the 3.5 years of writing this blog, I have never specifically written on “quality of life” or QoL, until now. According to Google.com, quality of life means “the standard of health, comfort, and happiness experienced by an individual or group.” For Carlton and I, during his time with Parkinson’s Disease, our goal was to keep him as safe, comfortable, and content as possible. While reading a medical journal this week, I found this sentence that jumped off the page at me.

Parkinson’s disease (PD) is a progressive neurodegenerative disorder causing motor and nonmotor symptoms (NMS) that result in disability, loss of patient autonomy, and caregiver burden.

https://www.hindawi.com/journals/pd/2021/8871549/

No truer words were ever written about Parkinson’s Disease, in my opinion. The article attempts to prove that while the stage of PD is important to assess QoL, one must also add in the non-motor symptoms as factors. It can be assumed that QoL will decrease as one progresses in the stages of PD, but QoL will degenerate even more as additional non-motor symptoms become evident.

Non-motor symptoms cause most of the burden on the caregiver, and this article states that very truth. “Not only motor symptoms but also NMS increase in their severity and burden over time, increasing patients’ disability, with additional worsening of their QoL, as well as caregivers’ burden.”

Without getting lost in the weeds of the medical jargon, let’s talk about non-motor symptoms more specifically. Here is a list from my book:

  • Sleeping too much or too little
  • Difficulty Swallowing while Eating
  • Changes in Smells (similar to COVID-19)
  • Soft Speech
  • Double Vision, Dry Eyes
  • Dental Health, Dry mouth
  • Constipation/Diarrhea
  • Choking
  • Anxiety – panic – depression
  • Dysgraphia – tiny handwriting
  • Both high and low blood pressure
  • Apathy
  • Stiffness
  • Skin problems (extremely dry skin or extremely oily skin)
  • General overall pain
  • Sweating
  • Drooling
  • Sexual problems

Notice that none of these are connected to shaking, or mobility problems, which are the motor symptoms. But as we have experienced, each of these can cause extreme discomfort, inconvenience, and hence loss of Quality of Life.

Factors of Quality of Life

It was strangely comforting to read that physicians are realizing this fact, researching it, and writing about it. Throughout the article, they mention that as non-motor symptoms increase, so does the burden on the caregiver, and therefore on society. It is comforting to note that as caregivers, our burden, our task, and our role in caring for our loved ones, become greater as their non-motor symptoms increase and/or worsen.

There are 18 NMS in the list above. How many of these has your loved one experienced, either in the past or present? Not all patients experience all of them, and each experiences them at a different severity, depending on many factors. But if you have time, please leave a comment with the number your loved one has experienced, just for our unscientific poll.

So, take heart, caregiver friend. The medical community is beginning to realize our good work, and they are working on cures for all parts of PD every day. Have a great weekend, and I am praying for you all.

Published by parkinsonscare

I'm a retired mathematics teacher, mother, and grandmother. I cared for my husband for 23 years, and now he is in Heaven. My new mission in life is to support and encourage caregivers like you!

10 thoughts on “Quality of Life

  1. My Cheryl has experienced all of those at one time or another. She has not had a sense of smell for a long time. I try to make things a little sweeter or a little more savory when I cook. These you can taste with your tongue. When I get it right she will say – This is good. 🙂 Your article is good too. I downloaded the pdf of the research and will read it later. Godspeed.

    Liked by 1 person

  2. Once again you have outdone yourself my dear friend. Out of the list of 18, the only one that John doesn’t have is difficulty eat. He still feeds himself and does great job at it. He rarely has trouble swallowing.

    Liked by 1 person

    1. And just think, my dear friend, you have not just survived them all, but you have cared for John so well! Thanks for reading, encouraging me, commenting, and being the one to care for your dear husband. Hugs to you today!

      Like

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