Today is Cheryl’s birth date. She was born on this date many years ago. Many years before we discovered each other in life; God, fate or karma intertwined our existence together in life. It is meant to be.
Yesterday we celebrated. It was a wonderful party. She remarked as we drove home from the park, “That’s the best birthday I’ve ever had. Thank you for putting it all together.” I thank Anna, David and Scott (and Mavis, Eric and Melissa). I had very little to do with it.
Back in March or April when it was starting to warm up and we were both two weeks past our covid vaccinations. Cheryl was anxious to party with the kids and grand-kids. I hopped onto the Hamilton County parks site and reserved a shelter for her birthday celebration. Good time.
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.
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.
Perhaps if one would choose, a bit more experience would precede making a pie for company.
About Thursday of last week, something she saw on television or read in the paper caused her to decide that she would make a pie for dessert on Sunday.
In her mind’s eye, it was no big deal. In her mind’s eye there is no Parkinson’s disease. In her mind’s eye she has plenty of stamina. On the way home from dinner at Through the Garden Restaurant on Friday evening we stopped at the grocery and bought some apples. On Saturday she cut up and peeled three of the four apples and had to sit down. I peeled and cut up the last one and another for just-in-case.
She took her meds and laid down for a bit. When she felt a little better, I made the crust under her tutelage. We (I) rolled it out and started over about a dozen times. I quit to put on shoes and gather my stuff for a trip to the store for a premade crust. On the way through the kitchen I stopped to try just once more with a twist.
My twist worked and we (I) assembled the pie.
Today we will take it to my son’s house to see how it turned out.
My other son’s wife is an expert pie maker. I probably should have subcontracted the pie to her and they live pretty close by. Maybe next time I will do this or maybe next time I will practice making crust.
Another roboshit call from some computer called “amazon”. Even the scammers are automated. Mr. Robo Death shown here maybe out of a job.
Ring! Ring! Ring! The pseudo-landline rings it cheery tone in the late morning. “Hello, is is a call about your amazon account…” — but Amazon, I have made purchases through and from Amazon, does not know this number for me. I have associated a mobile number with my account.
It is not surprising that there are so many robo-calls. “This is an apology call from your electric utility”. This same technology is much akin to the targeted ads that track any online search. They politely sit on the side of the screen and say “Pick me! Pick me!” If you are searching on a small device those same ads cover the information that you want and often reverse the “go away” and “Pick me” buttons.
At home on the VoIP pseudo-landline, answering the phone with “Supp!” or “Ahoy, ahoy!” instead of the traditional “Hello” confuses the software.
If you let the call go through it often connects you to a human in Mumbai or Jakarta.
It is an amazingly complex and technological world we live in.
In the middle of the night, very early morning, she gets up and becomes argumentative about staying up. Its about 3AM and I admit to being less than social at 3AM. Today for the first time she told me what was happening to her. She has severe leg cramps and partial immobility.
She has found that she can combat that feeling by struggling to get up and move around a bit.
This pain is described as constant burning sensation with occasional burst of sharp pain. As it was in my case, this pain is commonly exacerbated by cold and by light touch. I could not stand the sheets to touch my skin and being in a cold room sent my pain through the roof. This type is usually bilateral but it may start on the side where other Parkinson’s symptoms begin. For me, it was the leg where my rest tremor began.
Second type of leg pain is caused by dystonia
When related to levodopa, it usually occurs as a wearing off but can also occur at peak dose. In most cases this leg pain is unilateral and has direct correlation to medication intake. When pain is due to dystonia, it is more common in early morning. This type of leg pain is usually accompanied by toes curling and foot abnormally posturing.
Third type of leg pain is musculoskeletal
Musculoskeletal pain occurs due to rigidity, abnormal posturing, and lack of mobility leading to pain in the legs. It may also affect the joint like the hip or knee. This pain is usually more pronounced on the more affected side. It can be localized or widespread and also can be sudden.
Fourth type of leg pain is radicular pain
In this case, the pain is caused by compression of nerves in lumbar area which results in weakness, numbness and tingling, and loss of reflexes from buttocks to foot in a distribution of a nerve. It can be acute or chronic, and can be worse with standing and sitting, or better with laying down. Of note: in my experience many patients including myself have these symptoms not because of physically herniated disc but rather by the stretching of a nerve in the canal as it exists due to severe musculoskeletal rigidity and abnormal posturing.
So there you are problem solved. 🙂 But – there is always a but – asked my wife of many years to read the referenced article and describe or discern as best she can the kind of pain she is feeling. Out comes a description of stabbing pain in her heals. In her words – like someone is stabbing pins into my foot.
So that sucks! Peripheral neuropathy can be related to Parkinson’s disease. Pardon my french but goddamn this disease. She often has numbness in her hands in the morning. It is hard for her some days to simply hold a spoon to put cereal in her mouth. I bought her four kangaroo cups (invented by a ten year old to help her grandpa) to help with her unsteadiness with the orange juice she has every morning. These work great and she likes them, so she uses them often.
Dealing with an ever changing range of symptoms, pains and degenerative cognition can wear one out.
Carpe Diem! I’m off to research different sorts of beds and mattresses, etc.
She put on her year old Nike walkers. It was one of those sunny spring days that says fresh and new is what we are up to today.
Where should we go? – c;
Let’s go up Troy. I hate to go through the dip.- p;
There is a quick look around and search for keys and other kit.
What’s the weather like? – c;
Warm. Probably no sweater. – p;
Are you sure? I thought it was supposed to rain. – c;
Nope. Sure. Look. – p;
He holds the door to the front porch open.
It does look nice out. – c;
Out the door and off on two miles or so.
Cortelyou (core-tell-you or cortil-you, your choice) avenue is named after John Cortelyou who either developed or owned that part of Pleasant Ridge. On plat maps the area is referred to as the John Cortelyou subdivision. John and his wife Martha are buried in the Pleasant Ridge Presbyterian Cemetery on Montgomery. The pavement is narrow and parking is only permitted on the west side of the street. The part of the street that they live on if allowed to connect to it would make an acute angle to Ridge road. Troy avenue which meets Cortelyou just before it drops down a short incline towards Losantiville road makes the base of a right triangle with Ridge and Cortelyou.
Troy avenue meets Ridge road precisely where Ridge curves to the right to head south again after coming up the hill from the little valley that holds Amber creek. The short street meets the thoroughfare with an acute angle to the left and a right angle to the on the other side. There are mostly single family houses on the south side of the street and mostly multifamily buildings on the north side. It is a pleasant street. Narrow along its length but bright and sunny with few large trees along its length to obscure the view towards Ridge road.
Ridge road is poorly named because it never travels along a ridge in the earth but rather perpendicular to several. It would be more aptly named Over the Ridges Road but, no doubt, this name was rejected when the names were being given out or the makers of maps became tired of precision and in their gay manner shortened the name to Ridge rather than ‘Over the Ridges’ or ‘On the Way to Ridge’ or even ‘Up to the Ridge and down Again’ road.
As they walked they spoke of their surroundings and of people they knew. He came with her as he usually did on this day to get to know her better. They were empty nesters now. All three of their children were grown and moved away. He did not often want to simply walk around the neighborhood but she was okay with that she pushed him to get out of the chair and move. It is a nice day. Let’s go.
They took the acute angle at the end of the street and walked north in front of the houses that were originally built, as the story goes, to show off the type of housing available to be built in nearby Norwood. No matter the back story these are beautiful old houses set far back from the west edge of the street. Some well kept. Some developing creeping overgrowth. An earlier majesty and grace left for some later owner to recover and let the homes bloom again.
At the top of the rise where the road dipped back down into the valley, they crossed into the neighborhood on the east side of Ridge. Through a small dip in the topography and up toward Grand Vista. Grand Vista climbs a hill to the left as they walked toward Montgomery road. This road is known as the Pike by the older generation.
At this point the conversation is interrupted to ask, up or not?
I think not -c.
Okay. – p.
Following Grand Vista to the cul de sac and back out will add over a mile to the walk. One can turn a mere walk into a trek in this fashion. They continue to Montgomery Pike.
Turning south on Montgomery they headed back into the business section of the old village of Pleasant Ridge just one of the ridges that over the ridges road went over in its meandering trail south toward the old village of Oakley. Near this turn anchoring one end of the business grouping is the Pleasant Ridge branch of the Hamilton County Public Library. They paused for a moment to allow a young mother to organize children, bicycles and a stroller as the family left the library with their booty.
It is a magnificent day for a walk around the neighborhood and they are enjoying themselves. The temperature is warm. The sky is the shade of pure blue that appears after a spring shower washes the air. The daffodils are near the end of their reign but stubbornly hanging onto their beauty as early tulips attempt to shoulder them out of view.
As they near Kincaid Rd. another key decision point he asks, Kincaid?
Yes, she replies.
They turn north on Kincaid on the west side of the street. During this entire walk p. has moved to her right or left to place himself between her and the street. In his own mind it is proper for the male to position himself between the female and the passing traffic. He is not certain where this ingrained behavior has come from. He merely knows that is what he needs to do. So, he has placed himself on her right side as they walk down the street.
As they walk he notices that occasionally she struggles to keep with him and this causes him to slow a little and look down at her feet. The walk is narrow and he thinks that perhaps he has hogged more of the width than he is entitled to. As he watches she is not lifting her left foot always. She is dragging it in a limping motion.
Being a man, he teases – are you having a stroke, dear?
She replies with – I don’t know. My leg does not seem to work right.
They slowed more and he held her hand as they walked. She seemed to be struggling to maintain any sort of normal gait. When they got to Harvest they turned and headed back home.
I always remember Cheryl’s initial struggles with Parkinson’s this way. She remembers a different story. About this time she was a big deep water aerobics fan and participated in a class at the YMCA about three times a week. Later on we joined the Jewish Community Center and she did deep water aerobics there.
If you ask her she will describe going in circles in her water aerobics class when she wanted to go straight down the pool. She probably did that but what I remember most is this little walk we took one day many years ago.
“Not everything that is faced can be changed, but nothing can be changed until it is faced.”
I do not know much about James Baldwin. He was a black man and an author. He wrote “Go Tell It on the Mountain” and other things. He died a while ago. This quote which I tripped over this morning reading through other articles not from mainstream media as my sister-in-law likes to say, spoke to me. Lately, Cheryl has been struggling with seeing extra people in our home and upon occasion, though not wondering who I am, seeing me and sometimes not seeing me.
Yesterday evening she asked me if I had talked to Paul about something. I do not remember what the something was. It was not important . I quickly realized that she thought I was not me. I replied with I am Paul.
These moments seem to come early in the morning or late in the evening. It is dark. The lights are on here and there.
She talks about dad doing this and dad doing that. The first time she started telling me about dad was when I changed the dimmer switch on the light fixtures in our master bath. I had added a newer dimmer control with a toggle. I had thought it to be more convenient for operation in the night. It is and she approved of its installation. She told me so that night by saying – did you see the new light switch dad put in? It works great.
I did not ask who she thought I was. I merely acknowledged that it was a good thing that he put it in the bathroom.
That guy who brings the pills… is a common early morning remark lead in to some comment I said when I got out of bed to turn off the alarm and retrieve her first dose of medications for the day. There are many of these; That guy who brings the pills in the morning, he said we were going to the store today. (for example)
Extra people appear to her in our home. Not religious apparitions but little girls and sometimes their guardian an older woman will appear with them. A few days ago when I returned the bowl that had contained her pills and the water glass to the kitchen, she asked me what that woman wanted. I told her that there was no woman there. I was merely putting the glass away. She accepted that.
For many months, I had accepted that this observed change in her behavior and thinking was just a natural progression of Parkinson disease. This behavior does not present itself when she and I visit her neurologist. I sent him a note before our last visit. We talked about it at length when we were there last time.
We are in the midst of slight medication adjustments and a series of pathology tests to rule out any physiological problems that could cause symptoms such as these.
So far these are all negative which makes me a bit sad. She is in the minority of parkies that the disease affects her cognitive function.
It is now more important than ever to seize the good moments, live in the present and jettison the anxiety for the future.
Face the thing. Maybe the outcome can be changed. As a caregiver do not forget that you have greater knowledge of your loved one than the doctor does. Tell the doctor what you see. It will help to find a solution.
And don’t forget to Carpe Diem!
Who are you? Who, who, who, who? Who are you? Who, who, who, who? Who are you? Who, who, who, who? Who are you? Who, who, who, who?
Why does it make me so angry? It seems as though our entire married life these days is caught up with this disease of Parkinson.
In our younger lives we would have lively discussion and even arguments about stuff. Issues of the day, kids doing this, kids doing that, where to go on vacation, what color to paint the walls, any or all of those things were up for grabs. Those sorts of discussion are lost to time.
In the fifty years since we married, we have had many discussions and arguments. It is impossible to not argue with the one person in life whose knowledge and opinion you value more that anyone else. If I did not care for her greatly her thoughts would be of no import to me. Parkinsonism has changed this in our lives. She does not have the strength of mind to fight back and stand her ground in a discussion. I miss that.
I think that part of what makes me so angry is the fact that it is unfair for me to be so. There is a creeping despair that enters my heart when I come to the realization that I am treading on her heart. It is a kind of slow motion grief.
I worry for the future and what that might bring. I am often longing for the past when the independent Cheryl that I married was still my partner in life. She has ceased to be that. In ever expanding little steps she has given up her independence. She leans more and more on me. Perhaps some of my rage manifests because I do not want to accept the responsibility of her dependence.
Perhaps in my heart I want her to heal and despair of the fact that it will not happen. When obvious confusion appears it terrifies me to realize I was not paying attention at the time.
Perhaps in my heart I struggle with the patience necessary to hear stories repeated. Perhaps my anger arises from the retelling when I have shifted my thoughts to something that I has my interest and I am unwilling to give attention to the retelling.
Perhaps it is tiring to live in the present. Perhaps there is no solution except to live in the present.
Carpe the damn Diem. This Diem is now gone and was not seized.
An opportunity lost and it makes me angry and a little sad.
Another nuance to the problem of hallucinations, confusion and delusion is how the conditions interact.
Recently we have had discussions about two little girls and some older woman – possibly their grandmother or guardian – playing in the bathroom when Cheryl wants to use it. Sometimes the little girls are playing with stuff in Cheryl’s office in the evening when she is working the birthday card list. (She thinks.) Often when she is through for the evening she will close her office door to keep the girls out.
Probably last Friday after she had washed her hair and put on the special conditioner, she put those items in a special place where the hallucinatory girls could not get to it and she would not have trouble remembering where she placed it later. This is speculation on my part. I was not here.
This morning there was a crisis. The shampoo was not in its ordinary place under the bathroom sink. It certainly is possible someone carried the shampoo off somewhere but I expect to find it in some odd spot where the girls cannot get to it and Cheryl will not forget where she put it.
So far that special place it nowhere in my little office area.
Another thing that will keep my life interesting, keeping track of the special shampoo.