Month: October 2025

Parkinson’s Help

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I had a long conversation with a member of our Parkinson’s support group today. She called mostly to talk about her husband who has Parkinson’s disease (PD). And the struggles she was having as a caregiver with Parkinson’s disease care management. We talked for a long, long time. Maybe half hour, 45 minutes she was on the phone. She was pretty forthcoming, with lots of things that she was dealing within her life, I was surprised by the call and I don’t know why but I am glad she reached out and I was able to give her an ear. Afterward it made me feel good. It made me feel sad for her.

It made me think…

Think a lot about Cheryl and how I dealt with helping her deal with her disease. She had a lot of the same issues Bev was talking about. Her stories were remarkably similar to my memories of that time in our life.
Bev is dealing with it (Parkinson’s in her husband) right now. With her husband her description is very, very similar to where Cheryl was maybe 2 years or so before the end of her life. The parallels are really striking. Bev was telling me that they moved into the condo that they are now living in about 5 years ago. (Same for us.) Mostly because it was getting harder and harder for her husband. He always, you know, mowed the lawn. And he did the maintenance kind of activities that you have with the house.

She went on and on to tell me lots of stories about things and I think I’ll have to think about them for a while. But the but the whole story line is so remarkably similar and so sad and well, maybe not sad, but but frustrating, you know, the disease just kind of consumes your whole relationship with with your spouse, they’ve been married a long time too.

They’ve been married about 35 years. They were together 3 or 4 years before that. Cheryl and I were married 53 years and we had been together for 4 years before that, it’s just incredible how similar the stories are.

Anyway, I needed to take time away from what I was doing here in my class management at the Mason campus of Sinclair College. I had to go have lunch somewhere where I could sit quietly and think about things and grade papers and take my mind off of that phone conversation and the memories it conjured. That was such a debilitating part of my life and Cheryl’s. It was so all-consuming. I think that’s what gets missed when people talk about care. Giving it is so all-consuming, slow moving, frustrating and then people will still say, “Well you’re blessed to have her or your blessed to have him. There’s no fucking blessed going on in that whole Parkinson’s/dementia thing.

Just.

Not.

Happening.

Bev did tell me one other useful thing. Her family doctor told her that she needs to go outside and take a walk everyday. No phones, no music, no nothing, you need to go out and listen to the birds, enjoy the sunshine. If there is no sunshine, enjoy the rain, if there is rain take an umbrella, but for 30 minutes a day, you got to just walk away from everything, get rid of the stress, let it go. That is absolutely the best advice I’ve ever heard anybody say to anybody else about this horrible disease of Parkinson’s. It truly is a horrible disease. I remarked to her that it was the best piece of advice I had ever heard. (I got away to ride my bike whenever I could.)

Not only does PD make it so that you can’t get around easily. It’s a brain disease, so lots of times the brain goes wacko. He or she becomes a whole different person. Bev was actually talking about that too.

She and I commiserated for a bit; they like us have been married a long time. All the early on things that they and we had. They had a really good life up until just a few years ago, when she thinks he really went downhill in a hurry. But that kind of story is just so common, and somehow doctors aren’t able to describe the signs to the care partner. It seems almost like you would need to have a psychiatric version of Parkinson’s doctor. PD is a movement disorder, so one seeks out a movement disorder specialist but probably one also needs a brain specialist or its psychiatric personality disorder specialist, in other words, a brain guy to to talk about some of these issues. The sad thing is the person with Parkinson’s disease doesn’t recognize what is actually going on. The person helping a person with a dementia issue, of course, is struggling to do the right thing to get the best care. Those around him or her (the family) without the lived experience, those that aren’t dealing with it on a day to day basis, they think that everything is generally okay, because the PD person the demented person is able to actually keep it together for an hour or 2 or whatever it takes to get through the party or the social activity, and so, those people, that part of the family who is not living there does not get to see the whole picture.

They think everything is fine or mostly fine.

Whoever it is, is obviously ill with PD and can’t move so good. Maybe they look old and got arthritis…

So many things are invisible. They cannot be seen. Or we choose to not see.

Carpe Diem

Retirement

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Daily writing prompt
What have you been putting off doing? Why?
View all responses

Retirement. That is retirement from any income producing employment. I have selected January 1, 2026.

Why did I wait? Why did I not pull the trigger? The answer is shear inertia. I simply had not thought about it. How many other things do we keep doing simply because?

Carpe the rest of the diems.

Time Is… Precious

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Time does not move in one direction. Time is never straight. – Alexis Pauline Gumbs

A long and winding road… – the Beatles

Life is a winding road. – Sheryl Crow

Observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction, observation, anticipation, longing, presence, reaction. Indeed a wiggly and tedious road life is.

I subscribe to poetry magazine. It is a small unadorned volume that appears in my mailbox every few weeks. It takes me elsewhere when it comes. The quote that appears first is on the back cover of the September volume. This morning it attracted my eye. My thoughts went off in a similar but musical direction. I found the rest of her writing inside and I read it for a bit.

Today, however, is for the students. The introduction to industrial robotics and computer integrated manufacturing class for which I am the instructor is very technical. The students are young and vibrant. They are just beginning. Near the first curve or the first fork or the first turn-off, they must decide continue or turn. Is this the way? They are not here today, so I can review their work without them yammering in my ear about why they did this or did not do that because I was unclear. Many will not or are unable to ask a question. Many are able to accept another’s work as correct and useful. (No it is not cheating. I want them to help each other.) At this early part of the journey many believe (I think) that they still need to be spoon fed. A few are beginning to try things on their own.

The software is complicated and I have not found the way myself but I have a different motive. (I want them to discover for themselves the bigger picture.) They are able to twist the software into a knot that is hard to untangle. Learning programming techniques on the fly is fun, terrifying, frustrating, satisfying and tedious. → Observation, code, check, test, reaction, observation, coding, check, test, reaction, observation, more coding, check, test, reaction, observation, coding, check, test, reaction, observation, much more coding, check, test, reaction, observation, coding, check, test, reaction, observation, coding, check, test, reaction, observation, yet more coding, check, test, reaction. Will this never end? (I imagine some in the class thinking this to themselves because they are reluctant to say they are struggling out loud to the instructor.) Indeed, a wiggly and tedious road coding is, similar to life itself, similar to writing.

I can feel it coming in the air tonight… – Phil Collins

A wiggly road teaching is. As I work my way through the material which is specific to industrial robots of a specific manufacturer, my thoughts go toward how to generalize techniques and ideas to other areas. Programming (coding) a process is an art form. It is both technical and elegant. Although I have had the good fortune to do this work throughout my working career, I recognize I do not know all. Teaching, mentoring and instructing is humbling for me. I find out how little I know.

… all I wanna do is have some fun before the sun comes up over Santa Monica Blvd. (also Sheryl)

All of these thoughts and others came tumbling into my head when I read Alexis Pauline Gumbs’s quote on the back of Poetry. On some days, most days, poetry centers me. When I read the quote from her above I felt a pull to the content. I was floundering with industrial robots. Alexis was not writing about that. Alexis was writing about a fellow poet Cheryl Clarke.

“Time is not straight. Time spirals and veers, embraces and releases. She shows up with a U-Haul after one date. Time doesn’t move stubbornly forward. She comes back and helps an ex-girlfriend mourn the loss of her more recent lover, maybe even helps her raise her kids. Time is not obsessed with progress. She wants you to come back and revisit lessons you thought you had already learned. Time shows up brand new, as an imp and a trickster. Time is guided not by security, but by the risk of love. Again.

This instant. This triumph. Time is a lesbian.” — Alexis Pauline Gumbs, Poetry, September, 2025 issue

These are powerful words. ( “She shows up with a U-Haul” made me chuckle.) Time (life) is an instructor. Wisdom is “she” in the Bible. We would do well to listen, heed, be present for the message. Our time here is short and winding. Listen. Observe. Embrace the tedium.

Carpe Diem