Parkinson’s

Water

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Dementia has many different aspects, one of which is belief that one has taken in liquid when one has not. Coupled with the anxiety about urinary incontinence and urinary tract infections, it is hard to convince her to drink enough liquid. Water alone is boring.

It is more and more apparent that dementia, memory loss and aphasia combine as a perfect storm to make it hard for her to tell me what she is feeling and what I can do to help.

Today we are caught between a UTI and anxiety about incontinence. The inability to move quickly to the toilet when needed is not providing any added benefit.

There must be some better way to deal with it all.

Carpe (dammit) Diem.

Things that disappeared with Parkinson

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Teasing and associated humor — We have been married more than a half century. That qualifies us as an old married couple. At one point we could finish each other’s sentences. I could understand what she wanted by a look. We would banter and tease each other. With Parkinson that is all gone. Mostly. For maybe an hour or two after breakfast mild banter can occur but later in the day she will start thinking that I am picking on her. The switch is sudden. Sometimes I miss it.

Implication, inference, analogy — the parkie brain seems to struggle with inference. But she will still do it to me. The garbage can is near full. Instead of, please take the garbage out. We all do it.

With dementia and memory loss issues it doesn’t work.

Linear logical thought

Ability to follow directions (recipes)

Stick-to-it-tiveness, persistence — the opposite of apathy– is completely gone. I have not had to deal with a child that has ADHD, so, I have no comparison but many of her behaviors seem to mimic this disorder.

Intimacy is very different and difficult… I make no reference to sexual intimacy. That left us a few years ago. These days it is necessary for me to intrude into toileting. Never when I said I do did I think I might have to keep track of bowel movements. It is typically a very private event. PD however brings with it the side benefit of constipation. Memory issues do not help. Self reporting does not accomplish what it might if she could remember the last time she pooped. Hanging on to feces for long periods can send one to the hospital. PD patients should do all in their power to stay out of the hospital.

Carpe Diem — stay connected.

Part of a Study

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Pfizer is conducting further trial testing of a mRNA style flu vaccine. Their ad popped up on Facebook a few weeks ago and I answered it.

The first visit about 3 1/2 hours long was taken up with health history and all the normal blood related questions. After the initial interview an official doctor, he had a stethoscope draped on his neck, came in to ask many of the same questions. Good cop, Bad cop? I think that we were waiting for the vaccine to melt. A third person came in to train me on how to label nasal swabs that I needed to do if I felt like I caught the influenza virus from somewhere. Eventually another came to a blood draw. And another came to inoculate me with the double blind test substance. Every day in the evening for 7 days I have to report any and all symptoms on an app. I waited 30 minutes after the jab to make sure death evaded me.

I returned home to the cookie mess. Cheryl had decided to make more Christmas trees but had run out of gas, strength, linear thinking and wherewithal to complete the cookie dough. I guessed there was not enough butter and no flour in the mix. I saved the cookie dough but put them in the oven for too long. Probably should have been 10 minutes not the 13 that I had selected because I thought it was 15. The cookie expert (Cheryl) always says, set the oven for a couple minutes short and look at them. (The recipe words were nowhere to be found.) Oh well, I like crunchy cookies. She likes soft cookies which I think are under done.

Afterward Cheryl recognized that she could no longer make cookies on her own. Or she at least expressed it that way to me. Today she probably does not remember that at all.

Carpe Diem

Feeling Groovy / not Groovy

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How do I feel today? I write little scribbles here because it is a kind of therapy. If I find a little story in my head and I think I can tell the story. I do. I do not concern myself with who reads it. It is written for me.

Lately I have been listening to Simon and Garfunkel albums. Songs from old vinyl and from Alexa. This is the music of my high school years. For whatever reason, recently, it has become the background song track of my life.

It strikes me as interesting how many of these songs I know the lyrics to. It is also remarkable how that can lift my spirits. The 59th Street Bridge song just went by and I asked Alexa to repeat it. That is a super cool feature. It reminds me what a wonderful and amazing world we live in!

Feeling groovy about that!

Covid-19 virus, kungfu flu, Chinese virus, novel corona virus, whatever you choose to call it or slander it with, it has caused virtually everything to stop. In retrospect, Parkinson’s is good training for that. Much of our “running around” life went away with Parkinson’s disease. Lots more planning is involved.

The sound track plays “Bridge of Troubled Water” and makes me mindful of how much more intimate and involved our life has become as Cheryl deals with her symptoms and I help her to do so.

When you're weary, feeling small
When tears are in your eyes, I'll dry them all 
I'm on your side, oh, when times get rough
And friends just can't be found
Like a bridge over troubled water
....
Sail on silver girl
Sail on by
Your time has come to shine
All your dreams are on their way
See how they shine
Oh, if you need a friend
I'm sailing right behind
Like a bridge over troubled water
I will ease your mind
... Bridge over Troubled Water  - Simon & Garfunkel

These words, I did not copy them all, are a perfect description of the role of a caregiver. I actually teared up while Paul Simon (Alexa) was singing a moment ago. He makes me think about the importance of this job that was given to me above all my objections.

But not feeling groovy about that.

The first thing I remember
When you came into my life
I said I'm gonna get that girl
No matter what I do
Well I guess I'd been in love before
And once or twice I been on the floor
But I never loved no one
The way that I loved you
And it was late in the evening
And all the music seeping through
... Late in the evening - Paul Simon

I guess your journey through life can be happy without love for another. I am not wired that way. Each day with Cheryl is a new and valuable experience. More and more I recognize that to be an undeniable truth. It is, however, very hard to watch her deterioration.

But, all in all, Feeling Groovy. This is a great way to express my current state of mind.

Parkinson’s Disease sucks April 6, 2019

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Cheryl

This person is the love of my life. My companion, my confidant, my support, my cheerleader, my lover, the mother of our children, the person who fills me up, the person where I am home.

Parkinson’s disease has stolen the soul of her being and it sucks. This is an old picture. We made a trip with friends to Grand Canyon National Park and Arizona. She saw the Milky Way one warm clear evening in the desert. We walked, talked, enjoyed some ice cream. It was a great trip. We thought one of many to be had in our later years as we grew older. We intended to savor life, enjoy the activities and antics of grand children and slowly fade away to the grand march of time.

I long to see this smile. This is one of the few pictures I have with Cheryl smiling naturally, not posed, not requested. Occasionally I would get lucky with my camera. Parkinson’s has stolen her smile and it sucks.