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!

How do you Pick Yourself Up? (2)

A birthday picnic is a great way to do that. So, I reserved the picnic shelter in the upper left of this aerial photo to celebrate Cheryl’s (Grandma’s) birthday this year. If I can get all of her kids and grand kids and step grand kids all in one spot, she will be satisfied and happy.

Cheryl’s birthday often coincides with Mother’s Day. That always comes up when I suggest that we have dinner, a picnic or some other thing to celebrate her birthday. “You know that’s Mother’s Day? Right?”, she will say. Actually I never think about Mother’s Day, Father’s Day, Sweetest Day, Valentine’s Day, Sibling’s Day, Cousin’s Day or any of those other made up holidays. A curmudgeonly attitude to be sure, but personally I blame date dyslexia.

This year we are going to celebrate Cheryl’s birthday regardless of whatever else may be going on around us.

Maybe some of those other folks that have their own day will stop by to celebrate Cheryl Day with us.

Parkinson’s disease slows everything down so that many activities are hard. Just bull your way through that and do it anyway. Carpe the damn 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.

I want to make Mac and Cheese

It is a Friday in Lent. A favorite throughout our married life, all fifty of them, has been Macaroni and Cheese. Often through the years this recipe was trucked out on Fridays in Lent but it is an enjoyable dish, pretty basic, so we eat it at other times also. The Betty Crocker – Dinner for Two cookbook – has been beat to death over the years so about three years ago it was taken apart and slipped into page protectors and a brand new binder. Hopefully some grand child will appreciate the effort their grandmother spent saving this classic cookbook from the 1970’s.

Over time I have taken over most of the cooking duties. Some of that is driving the car to the restaurant or diner but many times I have selected some favorite of ours that I hope will not give her indigestion. My experimentation with Hello Fresh was all about getting new ideas. The Parkinson’s medications have made her stomach sensitive to some foods and spices. We have discovered some of those as we experiment. She lost her sense of smell long ago. Simply old age has made my stomach sensitive to some things and I suspect Parkinson’s disease has merely complicated matters for her.

In this Lenten season the whole covid thing has stifled the church fish fries somewhat. One can still drive through but it is not the same as going and hanging out with friends in the school cafeteria and socializing for a bit. This year our pizza Tuesdays have morphed into Frisch’s fish sandwiches with mac and cheese. The last couple Fridays I have made the mac and cheese.

This afternoon when I got back from school, she said, I want to make the macaroni and cheese. Okay, I said.

I am staying near to help if need be but I suspect I can be smotheringly helpful. So, I am backing away a bit to see how she does. Carpe the Diem, baby!

She is sewing on the never ending chair arm cover project and working on mac and cheese. I am doing laundry, drinking Miller Lite beer, listening to Flo-Rida (Oh, my lord, the light’s going down and the weekend’s here…) and writing this unimportant blog.

Carpe Diem I suppose also can mean do the laundry and back away from the mac and cheese.

It was a Christmas Card Night

But before that it it was a pleasant day.

Cheryl fell yesterday trying to retrieve something from her office. Our neighbor had been over for a Lenten dinner of fish and macaroni and cheese. She brought some fruit and ginger bread. During our discussion after dinner Jane said something that caused Cheryl to go to her office to retrieve a church bulletin. She stumbled and fell into the corner of the cabinet that props the printer off the floor. She bruised her chest. It was hurting her today. She moped around for a while and I convinced her to take an Ibuprofen to relieve the ache a bit.

After a bit she announced that she did not feel up to going to church. A bit later I suggested that we go to our favorite park to walk along the riverbank. We did that. A wedding party was celebrating and taking pictures.

We stopped at Nick’s Cafe in Cleves, Ohio for an early dinner – late lunch.

We took the scenic route home and I suggested we stop for ice cream. Aglemisis’ is very small in Montgomery. We got ice cream to go and sat in the car for a time and just talked. When we came home she laid down and rested for a bit.

When she got up, she looked through her Christmas cards. She was comforted by that activity.

It is an odd disease – Parkinson’s