Parkinson's: Naming Your Fears

 

A Journey Into Parkinson's With Nancy Mellon

Blog Coordinated by Corrine Bayraktaroglu

(If you have Parkinson's and are not ready to see information about Dementia  please don't read this post)

It was 3 am, I was up and decided to read a brochure from the Fox Foundation called “Thinking, Memory and Parkinson's Disease.” I hadn't read it yet. It scares me. My son, Brendon wandered by on his way to the rest room and said “Is this a good idea?” No it isn't, but I continued.

 I remember when I first realized my mom had dementia.  We were living together; it was a game changer and somehow startling to me.  I'd seen changes as time went on, but it was so hard to believe of my smart mom, sheesh, she'd been the editor of her town paper and had loved talking to everyone.  Now she hardly talked.  I found myself thinking “My mom is demented.” I haven't heard that term used in information about dementia, it is a brutal word, but somehow that was the term I said in my head.  (I just looked it up in the dictionary. It listed 2 meanings #1. insane #2. having dementia.

What do I do now, I wondered? I knew I couldn't leave her alone any more. It took a while to figure out how to handle our lives.

In the article I read, it said not everyone with Parkinson's experiences significant cognitive changes. Estimates vary but about 40% of Parkinson's patients get dementia.  I thought well that means 60% don't. And somewhere else I read 25% and I thought-woohoo that is better odds!

What is dementia?  Short term memory loss, difficulty multi-tasking or making decisions, trouble organizing and expressing thoughts clearly, and mood and behavior changes.

And this which I particularly didn't like reading: “Dr's use the term Dementia as a broad term for thinking and memory changes that are significant enough to effect a person's ability to do any or all of their daily activities, socialize with other people or work.” Katherine Amodeo, MD 

 “Dementia can range from mild to moderate to significant and it generally progresses slowly over time.” 

On the page called “Talking About Thinking and Memory Changes” it gave tips: “Use Humor-Brett Parker jokes- 'I forgot to take out the trash again...must be the Parkinson's!'”  I liked the idea of using Parkinson's as an excuse- “It's just my Parkinson's Dahlink” she says with a devilish smile.

Acknowledge Fear “Future unknowns- especially around thinking and memory- are scary. But naming your fears tend to make them shrink rather than grow.  Talking about your feelings can help you connect with others (many of us share the same fears) and work through them.”

So, I am naming my fear- I am afraid of dementia.  I think we all are whether it's from Alzheimer or Parkinson's, or some other disease. To be kind to ourselves, we must do everything we can to help ourselves (my next blog is about Brain Games. I am working on it at the same time as this one to help balance myself.)

Then let it go. Let it go.  I have been haunted by this article for the last week. I keep thinking about it and judging my poor brain. Gotta let it go. For now my brain is OK. Later is not now and we just don't know what the future will be like for any of us.

For more tips for what to do if you have or take care a person with Dementia : go to the Michael J. Fox Foundation “Thinking, Memory and Parkinson's Disease” A Guide for People with Parkinson's and Their Loved Ones

 Be kind to your selves, I will too,

Nancy and the Snark

Footnotes from Corrine

Such a good post Nancy and such wise advice. Easier said than done I know BUT it is worth striving and fighting that fear from blinding us. 

As the saying goes