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

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

Another Morning Conversation

Today is the day after St. Patty’s day.  So what?   Nothing what except we are now three days into the asinine idea of Spring forward.  In another week or so we will be adjusted to the new med schedule but not yet.  I could spend several paragraphs discussing the odd arguments pro and con to the whole idea of time change but it seems to boil down to a cover-up for a scheme to get more golf daylight without having to negotiate with each individual employer to do so.  Who started this idiocy?

What a mess with a parkie!  For those of you who are not taking care of a Parkinson’s patient on a daily basis, it is a crisis in disguise.  The medication schedule is off by an hour all day long.  I know from previous experience she will be miserable for about thirty minutes before each dose and then about thirty minutes after each dose as the meds kick in and the chemicals stabilize.

Assorted confusions appear in her mind.  Early this morning when I got up and brought her her first dose of everything all seemed normal.  I sat on the edge of the bed and waited as she did everything she needed to in the bathroom and then took the collection of pills I had set on the bathroom counter.  When she was done I took the little glass bowl we use and the water glass back to the kitchen.  Usually when I return from that we have a little discussion about what is happening that day as she is deciding to lay down a bit more or stay up.  Today, she was still standing at the bathroom counter waiting.  I asked her if she needed something else and she responded with she was waiting for that guy to bring more pills.  I convinced her that there were no more pills for a few hours. And we had to go nowhere until noonish when her exercise class began.  She seemed satisfied with that and we napped for a while more.

I awakened about an hour later and realized she was in the bathroom again so I got up. In the daylight savings time darkness I could see she had laid out some clothes that she might wear if she was going to church. I gently pointed out that we are not going to church. We were going to exercise class later. Anger and confusion appeared so I went to the living area to prepare for the miny tirade with some coffee.

In the kitchen I helped her get some cereal and dried fruit for breakfast. Life cereal with dried cherries is her favorite combination for breakfast with some orange juice. She ate that and I had some scrambled eggs with toast.

Afterward she started. One minute we are going to church, the next minute you say we are going to a funeral, and now you tell me it is an exercise class. Which is it! I do not understand why it keeps changing. Pointing out that she was dreaming and when she awakened she continued on in the dream, although appearing to be the case, was not the explanation she wanted. She was certain someone (me) was trying to purposely confuse her and she was tired of it.

Joe Dater – cartoon

Last night was very tiring she told me. You mean the business with the address list? Yes she said. I thought there would be more so I took my coffee to the chair I often sit in. On the previous evening she was organizing her birthday and anniversary card list. I had hoped to help her and simplify this activity last year with a new planner from Staples. All of the information I have installed in a spreadsheet that Avery can read so that I can print labels for each card. I printed labels and last year she carefully pasted the label information on the proper page in the new planner. Each month she gets out two or three old hand written address books left over from her mother and from her office before we moved to the condo minimum. I asked where the new planner book was and she responded that she uses that but it was going to take a year or longer to get the correct information in it. I incorrectly pointed out that she had put the information in there last year which caused an angry response so I quit talking about it. Eventually she became tired, took her night time meds and went to bed. So did I. It was early for me too.

And then she became calm. She got her sewing project and sat down to watch the early morning news with me for a bit. And I might be understanding the confusion. The old address books are crammed with a lot of info in a small space. The planner — being a planner like a teacher might use — is organized by month and day. We labelled it with the correct info on the correct day but her cognition no longer allows for that recognition. To her, it is a big black book with almost no information in it. I may have to create a cross reference by name and family.

Exercise is more effective than drug therapy

On the way to class she suggested that we go somewhere for lunch. It started goofy but it may turn out to be a good day.

We went to our old favorite diner for lunch after the exercise class. We had not been there for more than a year. Her conversation was about the diner and old remembrances. The diner had been painted and the ceiling had been replaced. It was much brighter inside. Often something on the menu in one of these places will spark a memory of part of her family. This time an old friend that we had not seen for awhile strolled in to have lunch with her friend.

The pandemonium seems to slowly ever so slowly to be breaking free. “Hallelujah” is on the music loop at the exercise class.

Sadly the daylight will be saved whether it needs to be saved or not. Personally, I think not. The system is idiotic. Keep in mind China has only one time zone. Geographically that country is as wide as the U.S.

Chart from the U. S. Navy

And Parkinson’s will still suck. Just more so while we stand still and the time zone shifts left or right.

The Disease is Nuanced

Simple concepts are confusing.

As a part of our previous stimulus package spending we purchased new furniture for the living area of our condo minimum. (smiley face) The three pieces of furniture do not come with extra material to cover the armrests. My clever wife with Parkinson’s decided that there was no problem with that and she set off with a neighbor to the fabric store to purchase some suitable material to manufacture armrest covers.

Two of the chairs do not have arm rests that have a distinctive right and left shape. Those are easy peasy. The third seating area which is a small sofa has an ionic volute curve shape to the arms. Her arm covers have a right and a left shape to them.

The engineer in me leaped into the breach to explain how to make a pattern and plan to sew a right and a left. The Parkinson’s patient listened diligently but did not understand. Several efforts have produced two lefts, then two rights. two weeks later and listening to conversation between her and our niece who cleans for us, she is on the road to making a left which is finished and a right which she is working on.

She has started this several times before and somewhere in the project right became left. This time I will try to be unobtrusive and get to the sewing machine before right becomes left.

Parkinson’s requires gentle unobtrusiveness but it still sucks. Happy St. Patrick’s Day!

The Second Dose…

I got my second dose today

hurrah, hurrah

We are ready to make hay

we are seriously gay

what else can I say

Pfizer was the brand on the bottle

or so they told me

How do I feel

I feel real

ready for the world to open again.

Life is short. I want to enjoy it

before it is over

One more time to smell the clover

And walk in the park

And shop in the mall

I want a do over

on life

Pandemonium is like ammonium

stinks

Blows like plutonium

boom

Booyah Baby – we’re outta here.

Don’t be a chicken squat, get your shot. — Dolly Parton

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.

Some Songs move me Emotionally

I probably should not ask Alexa to play Phil Collins.  Many of his songs get to me deeply.

Come stop your crying
It will be alright
Just take my hand
Hold it tight
I will protect you
From all around you
I will be here
Don’t you cry

For one so small
You seem so strong
My arms will hold you
Keep you safe and warm
This bond between us
Can’t be broken
I will be here don’t you cry

Cause you’ll be in my heart

Yes, you’ll be in my heart
From this day on
Now and forever more

You’ll be in my heart
No matter what they say
You’ll be here in my heart
Always
Always

Source: Musixmatch Songwriters: Phil Collins You’ll Be in My Heart lyrics © Walt Disney Music Company

Today I was working on material for school and as I often do I ask Alexa to play the first artist’s music that jumps into my head.  Today Phil Collins and his old band Genesis jumped into my head. I asked for Phil Collins by name and found myself listening to a bunch of Disney tunes.  “You’ll be in my heart” (Tarzan) just got to me emotionally and tears came to my eyes.

I suppose it is hard for men to come to grips with how they feel about someone or something if it involves emotion.  Many of us are embarrassed by our emotions.  I know I am.  But I have come to grips with the fact that it is a good idea to let those emotions pour out without embarrassment.  I try to do it in private if I can find privacy.  I have no worries if I cannot.

As the Parkinson’s disease continues, I get a sort of slow motion grief feeling that takes all of my effort to recover from.  This feeling is occasionally overwhelming. Music can bring the emotional response to this feeling spontaneously. I my case, I usually do not recognize that I was feeling this way in the background. Words to song or a melody will bring it to the surface. Earlier this morning I spontaneously began to cry. I waited for a bit and felt better. I suppose it released something in me because I feel better about life today.

Cheryl seems pretty good today also. Let’s have lunch out somewhere after exercise class. Okay, she said.

It is a rainy almost Spring day in Ohio and for now Parkinson’s is in the background.