January Eight

I am not a huge sports fan, so, should I write or should I read? On that day I elected to read after hanging the new calendar on her office door, putting away most of the Christmas decorations and helping her finish a batch of cookies. It was a pleasant two hours of downtime before preparation for church.

Church was sadly uninviting as the pastor is out with illness due to covid. We are back to socially distanced mask wearing in a gathering of perhaps eighty people in a building that holds 450 but has not experienced that level of participation for many years prior to the whole pandemic pandemonium.


So today is January 9, 2022. I checked with Cheryl and it is time for the three kings to go back to the orient. But the storage area is actually slightly west of where they are displayed this morning. Balthasar, Melchior, and Gaspar (or Casper) are their names according to Western church tradition. Balthasar is often represented as a king of Arabia or sometimes Ethiopia, Melchior as a king of Persia, and Gaspar as a king of India. So, maybe, the fact that the bucket and the storage area is west makes little difference. It is a much shorter walk than the guy going back to India.

Guys chasing a suspected super nova…

The past week has been a bit of a trial. Cheryl has been having trouble sleeping through the night. It is a common issue with Parkinson’s disease. As a consequence during the day she is easily upset, occasionally moody, somewhat apathetic, quick to anger and often fatigued. The rivastigmine was making her nauseated so it was discontinued. She has been taking quetiapine (Seraquel) and in working with her nurse practitioner we are slowly changing the dosage and timing of that to help with sleep. It is an annoying process but it seems to be working sort of.

Last evening we made blueberry muffins for Sunday breakfast today and for awhile she sat with me to watch our used to be favorite CBS Sunday Morning show. She has not sat and watched this show with me for any length of time for many months. It used to be our Sunday morning activity after returning from church.

Times change and I suppose I am attempting to preserve as much of the routine as possible while we travel this Parkinson’s journey. I do miss watching various pieces with her and commenting about it.

As her memory, creeping dementia and other odd behaviors appear it is incumbent on me to not correct her or even explain those behaviors to others. Her friends all know what she is dealing with. I do not have to remind them. People will show kindness or not. Total strangers can be remarkably kind and generous. Maybe because Cheryl navigates with a cane in her hand.

Carpe Diem!

Right and Left

Recently (yesterday) I convinced Cheryl to go to a chair yoga class. I thought it would be good for her. In my sometimes helicopter care partner mode it seemed to me that I might be able to find something for her to go to most everyday at PCF. She often wants to get different things that she uses in class so that she can do the exercises at home. But lately she does nothing at home that looks like exercise. There is nothing unique in that, many people to not.

Today when I talked to her about going to class she said, I don’t want to do that. I have a hard time knowing my right from my left. I have problems with a similar thing I said. I always have to say the alphabet jingle in my head. Elemenopee… I thought about what I said suddenly. Why was it necessary to make it about me?

She went on to say that all that reaching and stretching was hard. Somewhere in her conversation I realized she thought I was taking her to chair yoga. I spent another ten minutes or so convincing her that this class was one that she had been taking all along. It was not a new class. I realized that I was rushing her into trying new things to exercise her body (tired with PD).

Apathy and lack of interest to try new things or finish things once started is common in PD sufferers. I found myself reading about Apathy in Parkinson’s patients while she was exercising at PCF this afternoon. The internet of all knowledge directed me to Michael J. Fox; the APDA site; the Parkinson Foundation and others. All say approximately the same thing.

Apathy describes a lack of interest, enthusiasm or motivation. It interferes with the effective management of Parkinson’s disease (PD) symptoms, since apathetic people are less inclined to do things like exercise and follow their medication schedules. …

Apathy can be frustrating for people with PD, caregivers and loved ones. Understanding apathy as a symptom of PD and finding ways to cope with it are key to ensuring a good quality of life and for maintaining good relationships with caregivers, family and friends.

Therapies

Currently, there are no proven effective treatments for apathy — no pills or special therapies — but structured activities and opportunities for socialization are a useful approach. A regular routine, continuing to socialize and exercise even if you don’t’ feel like it…

from the Parkinson Foundation website

As I was reading along various sites, Cheryl was exercising three feet away. Same things are easier to get her to do. By that I mean things that she is familiar with, things she has done before. And as I watch her do the exercises she changes. Her motion becomes more fluid and steady. She does not quit. She pushes herself. And tears come me. What’s up with the emotional response in me? What a pain PD can be to people close by. Once she gets started all can be well. As class moves on she is an enthusiastic participant. I am merely an observer and not someone to argue with. (smiley face with tears)


More … My own thoughts … Usually when I write one of these messages to myself I struggle with what point I am trying to make. Not so here. It is easy to drift into making something about yourself. I believe that it is a natural act. To understand some thing, some idea, some opinion, some action of others we relate it to some local knowledge we already have. Educators call it scaffolding.

What happens when one has no similar knowledge? It can be made up out of whole cloth. It is natural. We, at least many of us, want to empathize with the other person’s unsatisfactory experience.

A life lesson, I suppose. Maybe an AHA moment appeared for me. Try to stop making it all about myself and still empathize with Cheryl. Or, at least, do not vocalize it to her.

Carpe Diem.

Not in a Long Time

Sometime ago about two years ago Cheryl struggled with fainting.  The neurologist blamed it on orthostatic hypotension and she does have some of that.  It is  measurable.  Her standing,  sitting and laying blood pressures are all different.  But two years or so she had fainting spells sitting at breakfast table after eating while working the puzzles in the newspaper. I got so used to it that I parked a pillow from the couch one one of kitchen chairs to be handy when I laid her on the floor.

Today we got up later than normal after Cheryl got meds on her 7AM schedule.  She washed her face, brushed her teeth and we had the church funeral discussion.  I made blueberry pancakes.  Her alarm went off for her 10AM Sinemet and Entacapon so she ate them with her vitamins and pancakes.

After eating I got cleaned up myself , sorted the laundry and dressed the bed. It is Friday (laundry and checkbook day). I got the washer started on the first load and staged the rest in the utility room near the washer. As I came back into the living area I noticed Cheryl seemed to be asleep in the chair by the kitchen table. She had fainted midmotion while removing the snap top of a container of crunchy snacks she intended to munch on while doing the puzzles. She was seated stiffly in the chair.

I got a pillow from the couch and laid it on floor and laid Cheryl down. She was stiff. I put her feet up on the chair. In the past she would wake up immediately after I laid her on the floor. She did not today.

This morning she laid there for awhile still out of it. It was unusual from a couple years ago. The stiffness was also unusual. Previously she was very limp. Eventually I was able to get her up off the floor and into a chair again. I got her walking frame but she was unable to pick it up off the floor. Tried to help but she kept pushing down instead of lifting up. It was as though her brain had the directions reversed. I got her to sit again and I got her transfer chair from the garage and with that I moved into the bedroom and got her to lie down.

She had very low blood pressure. We have meds for that. I gave her the 1PM dose of BP medicine at about 11AM and coaxed her to drink more water. I nagged and hounded her to drink more water, orange juice, tea, coke, whatever she wanted. There is a background theme of anxiety about incontinence at work here.

Eventually she came back and realized we had missed the mammogram appointment. We also missed chair yoga. We made it to the finger exercise class. The checkbook balanced and the laundry got done. All was well again. A few more steps down the road were behind us.

Carpe Diem.

Why is Slumber so Hard to Achieve?

The ageless question that I ask myself. Why does Parkinson not allow her to sleep and rest?

Tuesday – dinner with friends; A completely sleepless night afterward. Up, down, up, down. Eventually she slept for a couple hours.

Wednesday — nothing special about it, just Wednesday. A totally restful night. She didn’t move when I got up several times.

Thursday — Exercise class as normal. Overnight a couple odd things; teeth brushing at 2AM and Noxzema face cleaning ( I said not church today) she came back to bed. Leg pain — half in and out of bed at 5AM.

Friday was slow moving. Overnight she slept through although she was awake when I came to bed after reading (11:30PM). This morning for the first time she leaked. She was totally asleep when I got her pills at 7AM. She didn’t awaken for her bladder. She did not act upset about it as she has in the past when she occasionally had mistaken perspiration for a leaky situation.

Saturday overnight she slept peacefully. I awakened her at 3AM or so to use the toilet. She easily fell back asleep. She was sleeping deeply when I got her pills at 7AM. We went to church in the afternoon. She missed her 4PM meds in the confusion of preparing for church at 4:30PM. We had dinner with friends after church.

Sunday morning she was agitated and slept fitfully. She was fidgety in bed. In the morning she was worried about something. We went to my son’s house to celebrate a birthday of one of the kiddos.

Sunday night and early Monday morning she slept little. She was certain she had to prepare for the appointment with her neurologist at 3AM. We read the calendar. I showed her the annoying alarm clock that displayed MONDAY. She slept little if at all. I reminded her several times that her appointment is tomorrow TUESDAY. The information did not reassure her nor did it seem to stick with her even as she insisted she understood what I had told her.

Monday (today) she is still convinced she has a doctor appointment.

Carpe Diem…

October

Holy Moly it is October.

The beginning of the shiver months is upon us. I do not want to think about it but it happens every year. Because I am the contact person for our little condo HOA, I get a mailing from our landscape folks that it is time to put some money up to get on the schedule for the ice or snow storm clean up(s) for the new winter season. He usually sends he note out in late September. I always respond to him that I do not want to embrace his message but here is a prepayment anyway. It is the first sign of the shiver months to come.

Today it is raining. Strangely it is a warm rain but it is only three days into the month. Perhaps global warming is real.

Our little family has two important events in October. Two of our grand children have October birthdays. Both Maxwell and Audrey have October birthdays. They are child number two and number three in the same family group. This year they are eighteen and sixteen. Where have the years gone? Happy Birthday to you guys. May God give you long lives, good health and keep you safe. Godspeed.

Covid-19 boosters are here. We are old. We went to Walgreens and got a Pfizer third booster shot. The WHO thinks that it would be better to get the rest of the world vaccinated against this Rush Limbaugh killer cold before us old folks get a booster to stave off the infection but I prefer to be assured that my wife who deals with Parkinson’s and creeping dementia on a daily basis remains safe and healthy. To some that might seem selfish. I think it is merely prudent.

Carpe Diem. Happy October.

9/12/2021 — Sunflower Day

Today was the day to walk or run or ride to raise money for the Sunflower Rev it up for Parkinson. Team SMILE made a good showing. The pictures say it all.

It is a magnificent day on the riverfront in Cincinnati, Ohio. And a large contingent of our family appeared to help Mom, Grandma, Aunt Cheryl and Cheryl raise money for sunflowerrev.org. The fund benefits Parkinson’s disease research here in Cincinnati. It also is a social event that promotes understanding of Parkinson’s and how it affects patients and their families.

Special thanks to Texas for helping out today.

Carpe Diem.

Pizza Tuesday

Several years ago we began going to a favorite local pizza store one night a week. We tried different days and over time we landed on Tuesday as the day we went out for pizza. It developed into a tradition as my youngest son would say. It became known as “Pizza Tuesday”. Sometimes in conversation a friend might say, “Can we get together tomorrow?” I might reply, “No. That’s Pizza Tuesday.” It became sacred. We did, however, invite others to our favorite pizza store to share. Occasionally one could see local celebrities such as one of the local colleges’ basketball coach there snarfing pizza like the rest of us fans.

When we sold our old house and moved to our condominium we invited our neighbor and friend Jane to our Tuesday dining adventure. It became a time to chat and catch up. Pizza Tuesday as a tradition became even more ingrained in our routine.

The pandemic pandemonium stopped much of that activity. At first we carried out (took away) our pizza from our favorite pizza store and moved our tradition home to our dinning room table. That worked well for a bit. Over a period of approximately fifteen months we experimented with pizza that was not only pepperoni. We added vegetables and fungus. We tried other sauces from the menu. We tried other pizza stores. We tried take away from other food emporiums. We expanded our flavors.

As the pandemonium eased Cheryl and I slowly began to visit restaurants with few or no utensils or menus. I learned how to use the square bar code thingy that restaurants pasted to their tables, walls and doors. A restaurant with paper menus became a favorite when previously it was not a favorite. Victoria, a young waitress at the favorite-not favorite, began to recognize us by sight. We came when she was working often. We began to look for her and tease her a bit about her constantly changing hairstyle. There was a reason to go there beyond pizza.

Socialization is a strong motivator. I worried a bit for Cheryl’s safety and health but I recognized that for her it was important to simply get out and see people other than me. Even in a pandemonium, one must live. Neighbor Jane who is immune-compromised remained isolated.

This past Tuesday evening we went back to Pizza Tuesday. The three of us went to yet a different pizza store. Perhaps, for us, THE PANDEMONIUM IS OVER! Prior to this event we made a list of various foods both home cooked and restaurant dishes that we would like to have. Jane aimed this discussion specifically at Cheryl. We will read the list and tick them off one by one. And I hope make a new list at the end of this list.

We are all three vaccinated. Not one of us has bought into the disinformation distribution on social media. Eating out and conversation provides all of Maslow’s hierarchy in one way or another. This chart is similar to one I saw many years ago.

An old psychology chart that I have not seen for awhile.

Godspeed and Carpe Diem.

A Bit of a Crisis

When I was in California Cheryl had a severe bought of nausea that developed into dry heaves and spasms in her diaphragm. This caused my daughter to ring up the neurologist and as it turned out Cheryl’s doctor happened to be on the hook for answering the emergency phone. He instructed her to get Cheryl to the ER for help.

Our daughter called her brother who lives nearby for extra support just in case and took her to the ER near where we live.

A few hours later Cheryl came home after they had run several tests. She had no more bad experiences while I was away. I am very glad Anna was with her that night.

Sometimes the Diem carpe(s) on you.

We Are Back to Stations

PCF classes involved moving from station to station before COVID. Stations are back today.

Godspeed Parkinson Community Fitness.

The stretching begins in a circle.

Start in a circle

And then move to station exercises. It was exhilarating. It was exhausting. Everyone got to get up and move.

PCF is back to almost normal. I had to get up and help.

God bless us all.

Elevators, Showers and Kiddos

Overnight conversations seem to repeat with Parkinson’s patients. At least it happens in our home.

Yesterday we had an appointment with a dermatology wizard to look at and remove a spot suspected as a basil cell carcinoma. As a result my wife was anxious before going to bed. (I think I am getting used to this anxiety about future events.)

2 AM

Get ups and trips to the bathroom happen at two hour intervals when she is anxious. On the first trip I did not hear any of the usual thumps and bumps of using the toilet, so I got up to see if I could help. She was standing in the middle of the floor looking toward the closet door on the far side of the bath. How are you doing? — I asked. I’m waiting for the elevator. — She responded. I explained that the door was a closet and the toilet was over here, gesturing at the toilet and opening the closet door.

That seemed to knock her off the fence of using the toilet versus waiting for the elevator to go up or down. Afterward she came back to bed.

4 AM

I am going to take a shower so that I am ready to go to the dentist. (I saw no reason to correct dentist v. dermatologist.) pointed out that it was four o’clock in the morning and there was plenty of time to take a shower later. Her appointment was not until quarter ’til ten. She had used the toilet earlier. I convinced her that it was okay to get a couple more hours sleep before taking a shower.

Before going into the bathroom she sat on the edge of the bed and told me that someone was in there so she would wait. I got up to look. As I open the bathroom door I announce – get moving, Cheryl needs to use the toilet. Then I tell her there is no one there.

She usually tells me there were kids in there. Sometimes she tells me that Virginia was in there. (Virginia is our granddaughter. Cheryl sees her as a five year old.)

6 AM (maybe 6:30)

She is up again with a repeat of four AM activities. It is later now so the taking a shower thing is probably a good idea. I got her morning meds that she will take at seven. She took them a few minutes early and prepared for taking a shower. I went back to bed for thirty minutes of shower noise to wait for the extremely loud alarm clock to spew its wrath on the morning rest period.

Good Morning ALL, said the alarm clock. Off we went to the dermatology wizard and the rest of the day.

Carpe Diem.