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.

It’s the End of the World as we Know it!

A nifty song by REM playing on Pandora or something when I took Cheryl to a physical therapy session with a nice young man from U.C. Health in Cincinnati. I wondered in my head, is it?

It’s the end of the world as we know it (time I had some time alone)
It’s the end of the world as we know it (time I had some time alone)
It’s the end of the world as we know it and I feel fine (time I had some time alone)

The lyrics are kind of stream of conscience similar to “We didn’t start the Fire” by Billy Joel. It made me think, is this a new way we are going to operate from now on? Mr. Joel’s song is an earlier history of an earlier century. But then he is about my age.

So, is it the end of the world as we know it? Is it the new normal? What is normal? My normal is probably not your normal and why do I hate that comment about it is the new normal. Simply put, what is IT? For a Parkinson’s patient abnormal physical difficulty is common. The part of the disease that is hidden, mental confusion, memory loss, delusion and sometimes hallucination is also normal.

Today for the first time I thought seriously about quitting the little part time job I have with a local community college because it takes me away from Cheryl. And yet, I need time away from her and the care giving. But I believe I need the time away to be on my own terms.

Perhaps I want to take a walk in the park by myself in which I am not part of her support structure. Perhaps I want to walk at my own speed which is much greater than hers but did not used to be. Perhaps I want to take a walk were I do not have to slow to a pace less than a stroll to allow her to stay with me. There are times when we creep around the circuit and I try to get her to take full steps. Perhaps this Parkinson’s has gotten into my head far enough for me to ignore my own needs.

Cheryl really likes to walk but it is a struggle for her. She really likes to play Scrabble but it is a struggle for her. She likes to think about and organize her support group for Parkinson’s folks but it is really a struggle for her. Lately she has decided to do puzzles, well one puzzle so far, as a hobby but it is a struggle for her.

This is normal. There is nothing new about it. It is not the end of the world as we know it. It simply is the world we have.

Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.

– Max Ehrmann Desiderata

Desiderata by Max Ehrmann has become for me a meditation. I try to not distress myself with dark imaginings but on some days that requires drawing strength from a reserve that is depleted.

Michael is right. Parkinson’s sucks. Stay calm. Keep moving forward.

Now it is Autumn

Halloween is coming

It is the Fall of the year. The time to transition to walking from bike riding. Yesterday I started to do just that. It is cloudy and damp and hot for October but I enjoy walking through several neighborhoods near our home. I will still ride. I bought some kit to hopefully extend my riding into late fall and winter months but today I walked.

In the picture above, someone who lives here enjoys decorating for Halloween. I think I will return in December to see if they have the same enthusiasm for Christmas.

Wildlife abounds

Older folks walk looking down for trip hazards. At least I do. This little guy was getting ready to cross the walk I was on when I happened upon it. As you can see this tortoise has decorated itself for Autumn and blends easily with the oak leaves nearby. I almost missed it but it was startled by my passing and turned to go the other way.

And more Halloween decorations.

Bush Jack-o-lantern

Neighborhood walking is entertaining. It appears that I walk about a third of the distance that I ride. Hmm.

The path and stats

Keep moving all you caregivers! Find something that appeals to you and keep it up. Your health and the health of the one you care for depends upon your own good health.

And Parkinson’s still sucks.