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.

Happy Birthday Dearest One!

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.

Carpe Diem.

Unsure of the Cause

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.

I charged off on a search this morning with the internet of all knowledge and found this timely article at parkinsonsdisease.net [https://parkinsonsdisease.net/living/leg-pain].

…four types of leg pain in PD.

First type of leg pain is central pain

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.

–Maria DeLeon


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.

The Walk

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;

Okay. -c;

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.

Occasionally to Her I am a Different Person

“Not everything that is faced can be changed, but nothing can be changed until it is faced.” 

James Baldwin

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?

— Peter Townsend

Why Does It…

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.

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.

I Love a Good Game of Name That Acronym

A friend of mine put this on Facebook. I am certain that he put it there as bait and I bit. COVID is of course short for CO(rona) VI(rus) D(isease). The nineteen typically tacked on to the end is to demark 2019 as the year when the virus was first noted in Wuhan, China. The individual who first started the game apparently is displeased with the poor initial discussion of masks, personal hygiene, and vaccines.

This posting on Facebook is intended to rile folks up. I feel the pain myself. Having finished with my second booster shot of the Pfizer vaccine a week ago, I am elated. The previous leader of the free world could have celebrated his and his wife’s vaccination before they left the White House. He did not. The event was so low key that it was only reported after he flew to Miralago to resume the life of the rich and famous guy that he is.

I used to play this game when I was still working full time and some one would use an acronym with out first explaining what the term stood for. The implication being that if you did not understand the term you were not on the inside. I always made me laugh. If it showed up in an email I might ask an innocent question using my made up acronym. My favorite is SMART (Simply Magnificent And Recognizable Talent) goals. I think timely is a cop out. What does timely mean?

Think about it. Try UNSMART. (Uninformed New Sheep Mainly Are Really Trumpublicans) (political division)

Uniformly Nascent Solipsistic Males Actually Remember Transportation (random division)

Let your mind run wild. It is okay to use small articles and the verb to be in any answer. Be mean or generous, politically correct or not so, kind or not. There are no rules.

Cost Obfuscation Violates Individual Destinations (travel division)

Catholic Orthodoxy (has) Victimized Individual Dreams (religious division)

Curmudgeonly Orwellians Voraciously Imbibe Dragon-meat (Game of Thrones division)

Crash Objects Vanquish Indecisive Drivers (automotive division)

Over time some acronyms have become actual words (laser) and some words have become acronyms (smart). Language is fascinating.

Parkinson’s disease sucks but then a friend will send you down a rabbit hole with diversion of some sort for several hours of mental gymnastics. Thanks, friend.

Peace be with you