I Can See the Change

Living with Atypical Parkingson`s (Lewy Body Dementia)

While my daughter was visiting, her friend put up the new cameras and got our security system updated. That was a big help, and he even fixed a few things in the place for us.

Of course, now that the security cameras are rolling again, I have noticed how much I have changed in the last six months to a year, from viewing myself on the clips. I was hoping for slower changes to be honest. I find I have less and less stamina when doing things.

I scored well with the cognitive tests. I credit that to writing here on Substack. It has kept my mind actively engaged with the process of putting my thoughts onto the page. I can see, which in itself seems strange to me, that I notice my deficiencies, but not while I am preforming any given task, other than the fatigue and weakness. Even when writing I have to leave it for at least an hour, come back and reread what I wrote to fix things.

I notice my vocabulary has been shrinking, unless I seek out a word, (google). My recall has met its quota one moment and then in a while it is like the universe granted my a few more remembers, for the day. What perplexes me is the awareness of the lack of mental memory. I am not sure if I am articulating what I want to get across. Am I unaware while doing things, that I have forgotten how or what I am doing? My memory is playing hide and seek, and I want to call “Olly olly oxen free” for the remainder of any given day.

It doesn`t happen regularly, at least not yet, that I have hard mental days where the fog is thinker. For example, if I were to get in the car and find myself sitting there wonder how to put the car in drive, I have the awareness of that in the moment and shut the car off and go nowhere that day.

I keep myself in the kitchen while cooking, there is no more going and multitasking. Bill does the reminding. I will tell him something that I want to work on or need to accomplish and he would ask later in the day if I did whatever I told him. When he hears me say “oh sh*t”, he giggles and then I get right up and do it right then and there.

I credit caring for my brother for keeping me physically active. I had begun to take falls and injured myself with a rotator cuff tear. I`ve been in and out of therapy over the last 20 plus years.

See my muscles have been contorting since my thirties. I was first diagnosed with torsion dystonia which affected my whole body, the right side worse than the left. The medication gave me some relief and the ability to walk unaided again.

It has been two years since the atypical Parkingson`s diagnosis but three months since I was told they were leaning heavily at Lewy Bodies as the culprit. There are four diseases under the umbrella term atypical Parkingson`s diagnosis. The doctors can give you their best guess depending on how you present but the confirmation comes with death. Your brain is then sliced and examined under a microscope to tell your descendants what form of Parkinsonism you had.

My autonomic nervous system is affected so my body is constantly trying to reboot to temperature, blood pressure, heart rate, swallowing, etc.

The picture below was me today. I am tilted to the front right in posture. The hump on my back should have gotten me that acting gig, lol. 😉 I have little muscle tone left and my skin sags from the weight loss. Yet I am a fine specimen of a woman! 😊

Author-stage right

The next is me in Dec. of 2023. The picture captured mid spasm. (see left hand) I can also see the weight loss, besides the obvious I knew with close fitting looser.

Author-Dec. 2023

A few days ago. This one I sent my daughter. I barely recognize myself in pictures because of the changes.

Final photo and wrapping up this piece. My youngest daughter, her son and me.

I will continue writing and creating for as long as I can. I am so glad I started this Substack when I did. Even the last three months there is a noticeable change in my appearance.

✨Be the Light