Parkinson’s

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.

On To…

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I originally wrote most of this in December of 2021. The lessons I learned and techniques I developed for communicating with my wife who was dealing with Parkinson disease and associated dementia are applicable today. The lessons of life are illusory and fade if not maintained.

I am learning things about myself from Debbie that I was only beginning to learn from Cheryl and taking care of her at the end of her life. Dementia is a misunderstanding between the brain and it surroundings and the sensors it uses to detect the environment. An oversimplification to say the least but a miscommunication certainly. Missed communication is at the heart of any conflict or dispute.

Lessons from making cookies

December, 2021: Cheryl’s Cookies (Not the Commercial Venture)…

Living with a parkie (person suffering from Parkinson’s disease) makes me alert to new information when it comes up. That being said I do not always recognize my new task nor do I always recognize the information as new. This is about becoming a master cookie maker on the fly. I was not completely inept. I make bread often.

Executive function and loss of it…

Dementia occurs in about 50% of Parkinson’s sufferers who have had it for some time. Mild cognitive impairment often shows up first, followed by hallucinations, delusions, misunderstanding, memory loss and inability to follow simple directions. It is disheartening. Some behaviors are side effects of medications. Some come with build up of unpronounceable proteins in the brain. No matter the source, the behavior can be disheartening and annoying from a care partner perspective because the person you once knew is physically there and mentally not completely there. From a care partner’s perspective it seems that the medical community does not forewarn anyone about this aspect of the disease.

I am a retired engineer and have an innate curiosity about everything around me. Cooking, baking, bread making and all things requiring an oven have a particular fascination. There is practical chemistry in cooking both with the ingredients and the people cooking them. To the question, why do it that way? Near the end, my wife’s reaction often was anger to some perceived slight or merely to the wording of it. (She is the parkie in this story but that may have little to do with it. I caulked most of these reactions to her PD and her mental state at the time.)

It is an engineer’s question. It starts with me. Words and question structure are important factors. Engineers always want to ask why something is done some way or simply is some way. Why often sounds like a challenge, even to other engineers, if it is not asked properly. Tenor is detected in tone of voice both in the sound we make with vocal chords and inside our own head. Cognitive impairment interferes with interpretation of subtleties of tenor and tone of voice.

How to do…

December, 2021: Our latest challenge to our marital bliss is Christmas cookies. Baking is a hobby and a passion to me. I like to think I have perfected my meager talent at making breads of various types and shapes. I am proud of that but lately I have pushing into cakes and pies. The pandemic pandemonium gets to us all in various ways.

My perception of making cookies is one of a trivial exercise in baking. That is an incorrect perspective but one that I have internalized. December is cookie making time. Cheryl is helping me or I am helping her that is unclear in this reminisce but her Parkinson is affecting her more and more. Two cooks in the kitchen is a recipe for a challenge to peaceful coexistence. Two bakers near an oven enables battle lines to be established and defended with vigor. Starting a question with why is akin to removing one’s glove and casting it upon the dueling ground. [Emoji (:-)] Cheryl has made perhaps a giga-dozen (I just made up that word) of cookies. I have made none. What can I say to redeem myself? Engineers ask why a lot and in this exercise I learn to find a more agreeable way to get her to tell me what she knows.

The lead-in; I do not understand, why do… seems to temper the why. Small children ask why a lot until finally the because-I-say-so comes out.

Where to start…

To a skilled cookie baker the recipe is merely a guide, a refresher, a list that says these get lemon zest. Interestingly, that is much like how I view a new bread recipe. I am on familiar territory. (He thought to himself with arrogance.)

Not so fast apprentice! Nearby there is a master cookie baker. Do not question the master’s skill at her craft with disdainful utterances such as, why and how come? All will be revealed. But also keep an eye on the recipe and make answers such as, yes, we have put that in the mix and suggestions, such as, shall I add the butter?

Sometimes with creeping dementia ingredients are forgotten. Sometimes without that factor ingredients are forgotten. Try to be kind and remember that no one got up in the morning thinking, how can I mess with his mind today? Most importantly, do not raise your voice two octaves, that is a dead giveaway to your ignorance.

How does one check for doneness? (It is common sense!) Look at them. (the “fool” is left unsaid.) They will look right. What is right? (and on and on and on…) Cooking is a process. It is learned by doing. Life is random. It is learned by experience.

The 3C method – Cut out the Crap in the Conversation…

To a person standing nearby this conversation sounds rude. It sounds like one person is giving another orders and it can be that way. If done with kindness in the communicator’s heart and with understanding that a Parkinson’s patient also may be dealing with confusion issues, it is neither rude nor demeaning in any way. Often a person experiencing Parkinson’s cannot or does not get the implication or inference. Be clear. Have kindness in your voice when speaking. No teasing.

When tasting the cookies later after they have cooled, do not say, “YOU FORGOT THE SALT!” Instead say “These seem off somehow. Did we forget an ingredient?” Gentle discussion allows for thoughtful assessment rather than confrontational reaction.

The onus is on the care partner not the parkie to be patient, kind and clear. Be aware, care partner, that this is hard to do because you remember how your partner/spouse/parent/friend was before. (Good natured teasing may be misinterpreted. Be certain that your partner is not confused.) You too can be unaware of how they are now. The Parkinson’s patient may become sad or angry. Be persistent if you as care partner are very concerned about safety. Add some love to the conversation if you think you are not getting through the confusion. Strive to not become frustrated and raise your voice (two octaves).

We did wind up with our first battle batch of cookies. Although they were a motley crew, they tasted fine.

This episode came to me as I was thinking about other experiences that have cropped up in my new relationship with Debbie and I am getting to know her family and friends. Patience, kindness and clearness are useful aspects of communication with anyone, especially someone you care for deeply. Debbie has told me several times that she does not always know when I am teasing her. Perhaps I should not do that at all. The ability to tease someone comes with trust and love and familiarity. Perhaps I should remember that I do not know what I do not know and err on the side of kindness and ease, not tease.

Everyday is a winding road. I get a little bit closer. – Sheryl Crow (Good poem/song – read the lyrics)

Carpe Diem.

Exercise, Personality and Riding

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I suspect that few reading this will care much but I will tell you about it anyway. In a short little piece this morning on CBS, Tony talked about exercise and matching exercise to your personality. The researchers thought is that if you match your exercise to your personality trait(s) you are more likely to continue it whatever it is. In the Telegraph article that Tony was citing, they used the Big 5 model, a psychological framework, to find participants’ dominant personality traits.

I have been interested in psychology and personality for a long time. That interest was rekindled when I went for my M Ed. A few years ago. Hanging with Debbie has rekindled my interest again.

The Big Five model further divides each of the 5 into two as follows:

1) Conscientiousness – industriousness (a self-disciplined and efficient attitude) and orderliness (tidiness and a routine-based lifestyle). I make the bed every morning.

2) Extroversion – enthusiasm (friendly, sociable outlook) and assertiveness (an ambitious and socially dominant attitude) I greet total strangers with a smile.

3) Agreeableness – compassion (caring for and about others) and politeness. I care about how my kids are doing and I like to open the car door for Debbie.

4) Openness to experience – intellect (competence and quickness to understand) and general openness (a creative, imaginative and reflective outlook) Debbie and I have been to many different restaurants and are exploring various soft serve ice cream stands. We call them field trips.

5) Neuroticism – withdrawal (feeling discouraged and self-conscious) and volatility of mood. Sometimes in the afternoon I take a nap. Naps are healthy.

Two qualities, enthusiasm and positive thinking, in other words, scoring low on the withdrawal aspect of neuroticism were the key factors for happiness. The traits most strongly linked to numerous measures of well being include; life satisfaction, self-acceptance, and a sense of mastery and direction in life.

What’s this have to do with exercise? The study sample size was small. Less than 200 participated. In addition, only 70% or so of the initial group completed the follow up survey at the end. So proof! Any meaningful data dissipated rapidly but Tony talked about it anyway. His graphic showed a bicycle rider. The picture reminded me that it is my favorite exercise. I wondered if it fit my personality traits.

I became interested in this so I found the Frontiers in Psychology website and started looking for the article itself. I couldn’t really find the article but it was a very small study. I found this reference to it in the Guardian. I misheard Tony. It was a University College of London study of 132 folks who were invited to join in a survey. The article is humorous.

I still like to ride on the bike trail by myself. Others like to ride in groups. I listen to music or a book or a podcast or the birds while I ride along. I prefer the aloneness of riding. When I was caring for Cheryl it took me away from the heartache of that activity. The summer after she died, it took my heart to a different place much like meditation. This summer it is hot but it has developed into a hobby and an interest that simply gets me outdoors.

I do not think I am neurotic. (I hope the Guardian link works.)

Carpe Diem.

Men Don’t Like Questions

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Men Do Not Like Questions and Women Need Reassurance

That is a tag line that provokes thought. Debbie said that to me in a conversation we were having about I do not know what. It struck me as so true to stereotype I stopped to write it down in my notes app on my phone.

I observed the stereotype at work in an extra class I taught this spring at the community college. A logistics difficulty with the school caused me to take over a class that had been started by another instructor.

Young men in their all knowing way can plunge off into the abyss of I don’t need any help/I got this. In this case a little extra knowledge is helpful. They were building a control panel for the semester project. For one the magic smoke leaked out of a component. This is never good in electrical work. The young women, there were three, were unsure of their abilities and were more cautious. One told me one day, “I don’t feel like I know what I’m doing.”

I wrote to her at the end of the class my thoughts about her performance in the lab project portion of class. I do this for all of my students. I have done this since my student teaching days. I think of teaching and instructing as guiding the students. Lecture implies an all knowing authoritative relationship. I do not have that style. I think it helps me to get to know and understand their abilities and how I can guide and help them succeed. Along the way I make notes about them in the hope of aiding the journey.

To Simara: I recognize that my taking over the course midstream was disruptive to you. In my short time with you and the rest of the class I took the time to observe a few things about each of you. I am writing this to you to report those observations and offer some unsolicited advice. I detect that you are unsure about many things both in this class and around you in life. That observation may be an incorrect one as I have only known you for a short time. And yet you were not afraid to admit it as you said, “I don’t feel like I know what I’m doing.” That admission is a bold thought and shows an intelligence beyond your years. The important thing is that you asked for help. You may not understand how well that ability will serve you through life but it is a very useful ability to ask for help. Not everyone can do that. Often they are worried about looking stupid and unknowledgeable.

The whole idea of this class is to gain some practical hands on experience, so at the end of our time together I wrote to everyone to tell them what I thought of the class as a whole and to thank them for the smooth transition. They gave me the impression that the previous instructor did not like to answer questions. That simple fact would explain why they were so tentative about asking for information about the project they were working on. And for the project they were working on, they had incomplete information.

This experience was not unlike several business experiences in which I was tossed into a project that was going awry with the wish of, see if you can fix it. Sometimes that means starting over midstream rapidly and using as much of the existing disaster as possible. Sometimes it means finding a new piece of paper and resharpening the pencil. I failed one young man, Sam, who raced ahead not knowing he had incomplete information.

Not only do men not like questions but they do not like asking questions. Women on the other hand ask lots of questions. Follow up questions, many follow up questions help to define the edges of the path to be taken. The path becomes clearer as the follow ups serve to sweep the leaves off the pavement.

Debbie does this to me. My usual response is, “Hmmmm…” while I am stalling for time to answer whatever she asked. Sometimes our banter wanders off into the weeds while I am thinking about what I am thinking about. (It is another comment of hers, “you are always thinking about what you are thinking about.”) She is right. I am not a spontaneous answer-er. I have several stall techniques.

She asks hard questions sometimes, often actually. Her questions are often feeling questions. The answers to which are very often hard to put into words. I will see her today. I look forward to our long conversations about life. She helps me to see how bright and cheery the world is even though Cheryl is not in it. For that I will be forever grateful.

Carpe Diem.

It is Easy to be Bitter

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That thought popped into my head as I looked through stories on this blog and thought about the past couple years with Cheryl.

I do not want to be bitter. What I want is to leave it all behind for a while.

Hind sight is twenty-twenty as wisdom has written but the view is also distant and wider. It can be more scenic. Much sweetness is visible with the bitter.

Looking forward has greater appeal.

Carpe Diem.

Wordle and Remembrance

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Knowing They Can Fix Me

The gentleman said as a response to an unknown question in an advertisement about a medical institution. I was watching the morning newsy program(s) and thinking about the day. It is a concept that many, myself included, wish for. The hope is that a higher power, a greatness, a consciousness greater than one’s own will take care any difficulty and fix it whatever it is. Is that realistic? What about self reliance? All of this became too hard to think about, so, I awakened the New York Times Wordle game page and did it for a minute or two of distraction.

I inadvertently touched the archive button which I had paid no attention to previously. I found that it would let me go back and work on incomplete games. (down the rabbit hole I went) November of last year was when Cheryl moved to Bridgeway Pointe in the memory care section. There were a half dozen incomplete puzzles. I kept going backward in time working puzzles and thinking about what was happening in our life.

I got to my birthday in August of last year (2023). I did not finish the puzzle that day. I cannot recall anything about what went on that day. Perhaps it was merely another day filled with Parkinson. That goes without saying. The beauty of a journal or a blog is that often I have noted what happened on a certain day in the past. From my blog/journal:

—

That day I wrote about our day. Cheryl was struggling.

—

I am not surprised that I cannot remember my birthday last year. The event itself was unimportant to the task of keeping up with her Parkinson and her dementia. Perhaps one day an oncology style doctor will emerge to straddle the care complexities of PD, dementia and dying which no doctor seems to be able admit is the prognosis for this damnable combination of symptoms and inabilities. The phrase – no one dies from PD, usually you die with it – is very much a distinction without a difference. In fact it might peg the meter on my bullshit detector.

Perhaps next year I can recall what I did this year for my birthday and smile instead of cry.

Carpe Diem.

Habits, Routines, Small Adjustments, Change and Growth

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This morning I restarted my morning chair yoga exercise routine. This morning I restarted morning meditation. Two things I notice: I have a pleasant gentle ache in various muscles from the stretching exercise, I did not hear the tinnitus in my ears while focused on breathing. These came to me as I sat across the room to revisit that short experience and my sense of time passing so slowly dissipated while I did these activities. My timer seemed to announce completion after a mere ten milliseconds instead of minutes from when I started it.

Time compressed. Where am I going? What am I hunting for?

Good health and peace in my soul is my spontaneous answer to the second question. Does going mean physically moving and travel to somewhere? Or is it internal? Some of each? Neither?

When Cheryl was still alive and with me here at home, I began to worry that my own health and well being suffered because I was totally focused on her health, what she ate, how much she ate, her mobility, her balance, her attention, her memories, her perception, her moods, her bowel urges. I rejected concern for myself.

Much of that concern then is useful for me now. Now I am focused on my health, what I eat, how much I eat, my mobility, my balance, my attention, my memories, my perception, my moods, my bowel urges. I think older folks focus too much on bowel urges. At the same time it seems important to note what foods that used to be favorites no longer seem to be tolerated as well as they once were.

When Cheryl was still here I began and kept up for many months an early morning routine of chair yoga. I bought a book. (I am always hunting for the manual.) I found the book back this morning after I finished my ten minute scheme to start. The exercises are simple and directions have illustrations. (YouTube has plenty of these but as soon as one gets into the zen, the calm, the mood, some extra-volume political message appears and phffst, just like that zen is destroyed. For an unreasonable sum, YouTube is ad free.)

Facebook shows me advertisements for an app with some 90-something guy with great abs doing chair exercises too. Those are amusing and laughable and less obnoxious and quieter. Welcome to the world of zen and social media.

I am not hunting for perfect abs. I remain uninterested in protein shakes.

I am interested in losing a little weight because my pants would be a bit looser. Most of that weight is hiding out on the front of me. I see it every day in the mirror.

I like meat. Meat has protein and tastes much better than a protein shake. Peanuts, nuts, eggs, oats, seeds and wheat have protein and all of those taste better than a protein shake. If it isn’t broccoli or celery, there is some protein in it. Broccoli has better taste than a protein shake.

Where am I going? That remains to be seen and felt. I strive to find a deeper meaning within myself.

For most of the spring and summer months I found something in pedaling my bike along the bike paths around town. I found an inner peace. I learned to focus over time on the piece of the trail immediately in front of me. I looked far ahead only to anticipate obstacles and plan maneuvers around them.

I returned to our church. Cheryl was much better at religion than I am. I am more questioning. I returned to church not for the religiosity. I returned for the community. I sit in a different place. (Everyone seems to have their place in a church.) Cheryl had a place that she liked to sit and of course I sat with her. I sit in a different place now. Just me.

I am going toward the next thing. That thing is right in front of me. It is not way out in the distance.

“Winter is coming”, says the head knight staffing the wall in Game of Thrones. It is indeed. Prepare for it. Dress for it. Do not be anxious. Anxiety serves no purpose.

Carpe Diem.

The Walk and Fundraiser

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On Sunday September 8th the Rev It Up for Parkinson Walk/Run/Bike occurred. My daughter contacted a friend of hers who does silk screening and had special T-shirts made.

This year has been special in many ways.

At the beginning of the year Cheryl was in a memory care facility and was also being cared for by Queen City hospice. On April 22nd, she left this life for another.

She missed her 75th birthday by a couple weeks. I made no note in my journal about her birthday. I was down on that day. It was only a few days after I buried her.

I think about her often. Little things will go by in the day and my first inclination is to look over where she should be – in her chair at home, on the passenger side of the car, in the kitchen – to ask her about what she thinks or how she feels about it. Whatever it is.

My birthday came and went. I went to visit with my sister. I wanted to see her but I also think I did not want to be without someone on my birthday. Birthdays were a big deal to Cheryl and she made everyone around her understand why that day was important.

Our wedding anniversary came and went. I wrote her a letter. Writing it seemed to help me a little.

This walk/run was a favorite fundraiser of hers. I felt a little lost on Sunday. Last year she was unable to get moving to be there for the walk. Our family went without us. Over time Parkinson’s disease will peter you out.

I purposely work to remember her before the disease petered her out.

Afterward I used part of the afternoon to ride my bike for a bit. I thought about how she would have wanted to be with everyone. I thought about what a loving and kind person Cheryl was. I thought about how she would try to (her words) make sure everyone was satisfied and doing well.

I think that I was not doing well. I had not thought about that until my sister called in the evening to chat about how it all went. We talked for a while. I told her it was good and it was fun. I was at my son’s house and he had just asked me if Mom had ever actually walked the whole walk. I said no and was in the midst of memories of us walking when we used to hike. I had some videos of Cheryl on my phone and was looking at her Parkinson stride when my sister called.

Thanks, Joyce. I needed you right then and did not know it.

Carpe Diem