This Morning a small Success

I got up at about half after eight. We had been up at 7AM for meds and she went back to bed. I knew she had not slept well overnight. As I got up and she headed toward the bathroom, I talked about what the days events would bring. We have nothing on the calendar except for the exercise class, I told her. There is no church today. Today is Thursday. Yes, she replied.

I went to the kitchen to make coffee. As the beans were grinding I went out to fetch the newspapers. When I returned I set the coffee maker to making coffee and turned on the CBS This Morning show while waiting impatiently for the coffee maker to complete its task. Finally after an arduous four or five minutes where the succulent aroma wafted through our small living area the coffee genie made its happy gurgle and later a tiny beep. I poured a cup. Heaven is fresh bread straight from the oven and fresh coffee made from beans ground only moments before.

I carried my mug to my chair purchased during the waning days of the Trump administration with stimulus funds. I restarted the DVR recording so that I would not miss any of the covid, border, weather or political disasters. I nestled in for the first sip and looked at the WSJ front page. I few minutes later I checked and she was getting ready for church. I was in time to head that off with a minimum of anger from her that “no one tells me what’s going on”.

As I headed that off I reiterated that she did have exercise class today and she should dress for that.

After enjoying much more of my mug of joe I returned to check on her. She reported numb fingers and she was angry about it because it was causing her to drop things – her watch – and making it hard for her to put in her earrings. She thought she had broken her watch so she selected a different one.

The watch she was trying to put on was one which she rarely wore. It has a clasp that is hard to visualize even with the new reading glasses I got recently.

Cereal for breakfast this morning and a new thing – checking blood pressure – because of the numb fingers were at the top of her list once she came out of the bedroom dressed and ready for exercise. We left for PCF right on time. And then as we approached the parking area, zip, unzip, zip again, unzip again, different zip, the same zip as previous over again — I asked what are you missing? My little pill bottle. I want to find a Hall’s she told me. I helped her search to no avail.

Damn! We are out of Hall’s.  It is the only,  absolutely the only thing,  that can relieve a Cheryl scratchy throat.  (I am whining a bit. I have tried to push other solutions.  All have been rejected, alas.)  The fact that we are out was interpreted by me over time after a discussion about the Hall’s being kept in the upstairs bathroom cabinet so that the hallucinatory kids would not find them. (Smiley face) But we are out. I did not register the out part.

Later at PCF we searched the purple multiple zippered perfect purse but, alas again, no Hall’s in the little pill bottle. It fact there was no pill bottle. Where is that? It is not in the many zippered bag.

I left Cheryl to start her exercises and I went to Walgreens down the street to stand in line behind three people grocery shopping at Walgreens while I hold a bag of Hall’s that eventually cost me thirty-nine cents. I should not be a curmudgeon about it. I own Walgreens-Boots stock.

Carpe Diem

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.

She was Angry and Grumpy and Normal and Confused

And then not. It is a puzzling disease.  It is odd and frustrating.  It is Thursday. It is a exercise class day. I had no other expectations beyond that. The morning was kinda normal.  I got up at 7AM for meds and she laid back down for a bit. We got up at 8AM. Overnight she had been angry with me for helping her to the bathroom. She seemed like she was dreaming. She forgot where the bathroom is located and became angry when I opened the doors to show her. She shifted into what I call “little kid” mode and said, “you don’t know everything. I’m going to bed.” (Her hesitant PD motion is gone during these episodes.) She has had other verbal dreams like this before. She does not remember them in the morning.

Breakfast was her usual Life cereal with dried cherries and milk. Orange juice is the drink of choice. She perked up a bit and I watched the news. The morning news is getting a bit repetitive; first the covid report, then the Afghanistan debacle and then the general disaster report, fire, earthquakes etc. Life sucks all over the world. The boys in Gaza were not throwing stones and other pieces of concrete at the Israelis across the fence. The Israelis were passing out booster shots instead. But Cheryl seemed to be doing well this morning.

Off into her office she goes to check email and see if there is any news. She checked for text messages on the way there. No emergency emails were found. This could indeed be a good day.

Close to time for her second dose of meds she reported being very tired. Indeed this is a normal wearing off of the medication. I suggested that she should take her ten o’clock and then lay down for a bit. After her 10AM meds she is up and down a lot. It takes some time for the medication to bring relief. She often reports a tightness or congestion in her chest. A coughing jag may occur. She might get up and wander the house with her limping hesitant parkie motion. I asked if she needed help with anything. She said no. I told her that her class was going to happen in a couple hours and she should start preparing for that and put on her clothes, put in her earrings and so on.

She decided I was being mean and I should leave her alone. Perhaps I was pushing too much for her to get dressed.


As a caregiver it saddens me sometimes that as I try to steer her towards activities that I am certain will help her feel better she is resistant. I admit to pushing sometimes to get her off the tired and feeling not up to it fence. She gives me her wrath in return. It would be easier to give in and accept her malaise. The relief is only short lived, as I have done that before and she wanders around in a funk for hours.


We discussed going to her exercise class at length. She told me that she knows it helps her but she was really tired at that moment. I suspect it is hard for her some days to summon up the courage, strength and ambition to go forward with this tiring disease. Her sister Janice often complained of being incredibly tired constantly. In Jan’s case she slept mostly in a lounge chair. Cheryl seems unable to nap in a lounge chair.

I asked if she wanted a little Coca-Cola and chips or a snack of some sort. Yes. What kind of chips do we have? – was her reply. Only potato chips, I think you ate all the Sun chips, I told her. Another thing to keep track of is her appetite and desire for certain foods. Up until about three years ago Cheryl always had some peppermints with her. It was basically the only kind of candy that she would eat. Today she never wants them but I have butterscotch blobs in the car because I like them. She likes them also.

She went to class. I noticed that she seems to be coming out of her funk. She had conversation with several of her fellow classmates on the way in. PCF is such a warm and welcoming place. As she came in and talked to people she perked up. As we were driving over to PCF she asked where should we go for lunch. Then she asked, “How about Skyline for lunch?” We have not been there for several weeks but it is a favorite of hers. (One cheese coney – no onions. Sinful.) We’ll see was what I thought at the time. We ate lunch at the Skyline on Plainfield Rd. (One cheese coney – no onions. Still sinful. I had a 5-way.)

We shopped at the IGA to buy groceries on the way home from Skyline.

We had corn on the cob and hamburgers for dinner.

After dinner she went to work on the labels for birthday cards. She was confused about printing labels when I checked on her but she was working on organizing things.

She came into my office at about 9PM and asked me to give her a ride home. She mumbled something like, “Mom has left so I’ll need a ride home.” I helped take her bedtime meds. I explained that we were already home and I would help her with printing the labels for the birthday cards tomorrow.

Oh well tomorrow is my birthday.

Carpe Thursday Diem!

Extra Shadings

Things rarely are as simple as they seem. Life is not binary nor tertiary. It has many more shades than that. Many more colors exist.

How do we perceive color in the world and what is its importance? There seems to be no physiological construct to perceive color in our eye. Are we able to detect minute variation in frequency of light waves? And our brain says – wait a minute that photon was faster, or slower.

Some are color blind but what does that actually mean? Are we not all color blind to some degree?

The girl in the control booth says fade to black. Is that a color? Why not say fade to white?

An analog world of life has nuance. It is not binary nor tertiary. It is a rainbow.

#RDP, #Nuance

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.

Things That Make You Happy

Lately I have been thinking about this topic. It came to me while helping my son build a new shed in his backyard. We had planned to go visit on a Sunday afternoon. He had bought a kit the previous week. He had assembled the floor on Saturday and we used that to assemble the frames for the walls. It is was very satisfying work. It made me feel useful and happy. Dinner was good that evening.

That feeling of being useful made me feel happy. The physical exercise was probably part of it too.

The Covid-19 pandemonium has kept me from seeing my sister for a long time. It is not as though we need to see each other often but of our original family only she and I are left. Somehow that makes it more important to talk and see each other. I have set up a trip out west to visit her. My nephew, Jeffrey, is getting married soon, so she and I will meet in his part of the universe. We will meet up a couple days ahead of time and wear ourselves out eating and chatting. I have spent the money with the airline. The trip is set that makes me happy.

Acceptance of what is removes doubt and anxiety about what might have been. Those concerns that are no longer concerning can make one happy. Look at this little cartoon I tripped over somewhere. Look at all the negatives that one leaves behind by accepting the fact that it is raining. Yup. It is raining. You will get wet today. Plan accordingly.

One cannot change the weather.

Today I frittered away much of the day reading a novel that I began yesterday evening before going to bed. I very much enjoy discovering an author whom I have not read before and becoming immersed in the story being told. The outside world disappears for a time. It makes me happy.

Once in a while little disappointments creep into our lives. We can dwell on those and build them into the mansion that they are not or they can be let go. If one does not dwell on the disappointments in life and focuses on the joys of life, happiness comes in abundance.

Zarchary

Look at this face and tell me that it does not give your heart joy and make you happy. Young children in all their innocence have to be taught life’s disappointments. How would they turn out if they were never taught these things? What if they were only taught life’s joys?


In this world of Parkinsonism that Cheryl and I find ourselves I look for happiness wherever I am able to find it. Most times it is in the very small things where I find happiness. If Zachary comes to visit and does not get upset when Mom leaves for a couple hours we are happy. If Cheryl is having a good day after she has slept well she is happy which makes me happy. If we have lunch out and she is able to find something that she wants she is happy which makes me happy. In a few days we will celebrate Cheryl’s birthday in a park. It may rain. Inclement weather is predicted for that day. But I will be happy. We have had one more year together.


Stay moving and get as much exercise as you can stand. It releases endorphins and makes you happy.

https://pubmed.ncbi.nlm.nih.gov/31888602/ – A relationship exists between physical activity and happiness

https://8fit.com/fitness/exercise-and-happiness/ — How exercise affects our mental health

https://www.theguardian.com/commentisfree/2019/aug/25/does-having-children-make-you-happy-yes-if-you-let-them — Children and happiness

Pie makes anyone happy

Carpe Diem

Parkinson’s Awareness Month

This is Parkinson’s Awareness month but for me it is just another month. I have expanded these thoughts and comments specific to Cheryl. In the comments below I have added information that she might say but these days Parkinson’s has robbed her of language. She can speak fine but words can be hard to retrieve and occasionally some severe confusion about what is coming, where she is, or, for that matter, what happened moments ago.

Nevertheless

To the Ones That Love Me…This is what you need to know about me and my Parkinson’s Disease.

This is not a death sentence, PD can be managed. Encourage me to exercise daily, it is MY MEDICINE. – It is remarkable how much a few simple exercises can help Cheryl. Many of the exercises are simply vigorous movements or stretches. At her Parkinson Community Fitness the class exercises are tailored to folks dealing with PD. She cannot do all of the motions that the instructor asks but she tries her best to do them. The exercises can pick her up in a way that acts on her body like an extra dose of meds. Many times afterward we will have a late lunch somewhere because she is feeling good.

Early on she recognized how much exercise helped her to feel good. When her mom was still alive she spent a great deal of time at Bridgeway Pointe helping Elaine with various things. Elaine regularly exercised on a recumbent bicycle-like exercise machine. Cheryl did this as well with her mom and occasionally with me at the YMCA. She sought out an exercise regimen at the Y with one of the trainers there and developed some exercises specific to her particular inabilities. Later when PCF opened we joined. It has been and still is perfect for a non-athletic person such as Cheryl.

Don’t make assumptions about my PD, every case is different. – For many years Parkinson’s symptoms for Cheryl were mainly physical. This is no longer true. Hallucinations, delusions, mental confusion and memory loss have added to the morass of physical symptoms.



A meditation – serenity and peace comes to me when I can see that Cheryl is safe and unafraid. Most things that occur with PD cannot be changed. It is very hard to accept that fact. It is a degenerative disease. In my manliness I can see, or think I can see, ways to mitigate and ease her mind, life, anxiety and worries. And when I have done that I have removed any small bit of independence that she still has. In Cheryl’s mind oft times her disability does not exist. She has yet to capitulate. A confused mind does not recognize its confusion.

My meds have to be taken EXACTLY on time everyday. Spontaneity is no longer, please help me plan ahead. — This is complicated by the fact that what is eaten either before or after greatly affects the usefulness of the medication. The primary treatment of PD is a combination of carbidopa and levodopa often referred to as Sinemet. PD is a result generally of a dopamine deficiency. Absorption of this chemical occurs in the gut and the presence of other proteins inhibits absorption. So, “Hey. I’m hungry let’s go grab a burger somewhere!” spontaneity is gone from our lives and has been for some time. We often forget that and opt for spontaneity anyway.

That being said, Cheryl greatly enjoys the company of others (friends, siblings, past acquaintances) during dinner or lunch and she easily loses track of time and pills, food and drink get out of sequence. Her body’s reaction to this is twofold; she becomes exhausted (but not always) and she may develop severe indigestion (but not always). She may have either, none or both reactions.

My health comes first. I need to put myself before other’s needs and responsibilities. – but Cheryl is unable to do that easily. it is not part of her personality. It never has been. She is the oldest of six children and as they were growing up, her mom gave her more and more things to do and help with. I tell her often that what we do and where we go is really up to how she feels. She knows that she needs to put herself first but she would rather be with family and friends even when she is feeling not so good.

The other aspect of this is that she may feel perfectly fine until we are somewhere for a bit and she will crash. After she recovers she will become apologetic and worry that she has ruined everyone’s experience.

Anxiety is real. Don’t overwhelm or over plan me. – I have over time gone behind Cheryl’s back, so to speak, and have suggested to organizations that Cheryl is involved it that they find another to perform whatever little task she has been doing for them. She was the go-to person for anything computer related. It was her career for many years. These days it is merely a source of anxiety and confusion for her. It has reduced her anxiety level and in some cases has made me the bad guy.

I am okay with being the bad guy if she sleeps better at night.

Sometimes l am exhausted, especially late afternoon and evening. – This happens most often after she has taken her medication. It seems the meds can overwhelm her body but not always. “Always” would be easier to plan for.

How I feel changes by the hour. I can feel good in the morning and terrible an hour later. I am not the old me who can multitask and go-go-go… – It seems that any sort of multitasking activity is gone from Cheryl’s life. I however like to whine about how many new things I take care of in our life now. Cheryl no longer drives. I am her driver (whiny voice).

Be patient and don’t overwhelm me. – two questions in a row overwhelm. If that happens with me nearby, I will answer for her and slow the conversation so that she can keep up. This can include repetition.

Apathy is real! – And sometimes attention deficit is real also. It is easy for her to start one thing and be distracted by some other thing.

Sometimes l just can’t do a task and need your encouragement. – Like puzzles.

Communicate with me on your concerns and help strategize new ways of doing things. – This is a constant activity in our house. It is easy to use up days thinking about and trying new ways of doing things. It has also taken some time to train the care giver (me).

Help me to eat clean foods and drink lots of water. – Cheryl really does not like vegetables of any different variety that was not fed to her as a child. I do not know if this has any truth to it but there are many things she will not eat or even try. Her idea of lots of water is two or three sips. These are my observations from my experimentation with Hello Fresh meal kits.


As a caregiver it is hard for me to explain how frustrating some of these nuances can be. Resistance of personalization of this disease is very hard to do. I mean this two ways – projecting my feelings, what I think she is feeling, onto Cheryl and dismissing what she tells me that she feels. One of the comments above is that every case is different. This is not unique to PD. Scientific medicine would like the mechanism of disease causation and progression to present as a commonality to all humankind but that simply is not so.

There is a lot of discussion of phases of Parkinson’s disease in medical texts and websites. From my narrow view that is mostly crap. Literally everyone is different. It serves no purpose to relate current symptoms to some list and determine were one is in the dance we all have with death. It is best to look for and act on the feeling good times. There will be plenty of time to consider the feeling bad times after one has passed from this life.

Carpe the Diem!

Our Stock Club Met in Person

It has been exactly a year since our stock club met in person. It is hard to express how much I missed those in person meetings over the past year. There is a lively atmosphere that does not come through the Zoom meeting platform.

Our club first met in March of 1984. Thirty-seven or so years ago a couple guys in the engineering department of a no longer existent machine tool manufacturer in southwestern Ohio said they were wondering if we could start a stock club. The Dow Jones industrial average was hovering just a tad above 1000. It was a big idea. We would all be rich men. All it would cost was $20 a month. Some things are lost to time but we started the club with ten members. We had as many as nineteen and now we are eight. Four of our members and former members are gone from this life. The rest are still here somewhere. We were all much younger then. Most of us are grandparents now, though not all. None of us are rich in a material sense, although we are rich in our friendship. It has always been fun to chase the rainbow.

We started with different expertise in each member on purpose. A stock club with only engineers was probably doomed to early failure. Every stock would be analyzed to death. One of the things that engineers are very good at is analysis. From the beginning the membership actively sought other members who were not engineers. And although today we are eight, we are only half engineering folks. We are not all retired yet.

For the first time tonight I realized how much the pandemonium has ruined our social fabric. There was a joy in the discussion about various stories, some stock talk, of course, but many other topics. Children, grandchildren, sports and travel are all fair game.

The market was up today. Or at least the piece of it that we owned was up. Life is good today.

It did not start out that way. Cheryl arose at 5 am never to return to bed. When she gets ups very early in the predawn she tends to be slightly confused most of the day. Today she did not take her meds right away as she has done in the past. She found the donuts left from Sunday and had two of those before she decided that she should take her meds. As a result she was merely thirty minutes or so early. She was, however, confused about the time and day of the week.

She was still confused about the day when she went to bed a few minutes ago.

Today was physical therapy day. Brittany (PT) spent extra time with her standing up from a sitting position and balance. She also spent time getting Cheryl to do several of the LSVT Big exercises that Cheryl struggles with.

Cheryl has never been a sports person in her life. Much of the demonstration and lecture about exercise and form is lost to her. Now that she has Parkinson’s disease it is more so. But it helped her, for, as we drove home, she suggested that we go to a park near where we live and we walk around the walking path near the creek.

So Carpe the Diem – we went.

I do not know if Sam Clemens said this or not. Somehow it does not seem curmudgeonly enough.

Exercises for Parkinson’s Folks

The single most important thing for a Parkinson’s patient can do to improve their mood, movement, emotions, strength and well being is exercise. For a normal person this is a merely a scheduling activity. For a Parkinson’s patient it is difficult.

Complicated for someone who never did sports at all. A former sports person would be resolute in their efforts. They would have had that former experience in their life of exercise and training that keeps telling them that it will be useful. Perhaps they had to train to recover from an injury. Perhaps they wanted to hit more three-point shots in basketball. Perhaps they wanted to hit the ball a little straighter in golf. Perhaps they wanted to strike out that guy who hit it over the center field fence the last time they pitched to him.

For a parkie it is a matter of walking to the sink to get a glass of water.

LSVT Big is a therapy for getting Parkinson’s patients moving again and keeps them moving. The exercises seem simple to a person who has no difficulty with movement. After twelve or fifteen years of effort she is more resolute than ever to keep exercising.

But it requires organization and her mind refuses to cooperate.