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!

Double Red and Laura’s Legacy

Almost fifteen years ago this summer is the time that I found out that I was a match to my youngest sister Laura.  She had found out earlier in the year that she had Myelodysplastic syndrome.  Her body was turning on her.  She would die without treatment.  Then our whole family was still alive.

Mom and Dad still lived in their home in Madisonville.  My elder brother lived in Florida near Orlando with his wife.  My younger sister Joyce lived with her spouse in Portland Oregon.  Laura and her husband lived in south eastern Indiana and Cheryl and I lived in southwest Ohio in Cincinnati.  Now only Joyce and I are still alive.

I think of these things when I donate blood four times each year.   I ponder how long I can donate blood.  The only answer I get when I search for that information is, as long as you are healthy,  you can donate.

This started with Laura but I had donated blood before, just not on a regular basis. When I was in school at the University of Cincinnati in the last millennium an instructor whom many of us liked let slip some personal information about his family.  His son had been in an accident and needed blood donations.  Several of us went to Hoxworth to donate.  I was too young so permission had to be obtained from my parent. Looking back this detail seems odd. I was eighteen at the time.

With Laura’s diagnosis and need for blood stem cells all of us siblings were tested to see if any of us were a match. Only I was a match. I found this out from the nurse who called me as was driving back towards Boston from Cape Cod. We had gone there for a little vacation and to visit with friends. This was convenient for Laura and me as neither of us had to travel far to do this but I had to get home first.

The summer of 2007 was a long one for Laura and me. I cannot speak for Laura because she did not make it out the other side of the treatment process. I am changed forever.

The process takes several days. For me it involved a very thorough physical and several meetings with the medical folks at the end of which I was deemed healthy enough physically and mentally to go through the process. During one meeting with a nurse who also had background as a sociologist, I was made aware of the fact that there was a chance that during the implantation process my stem cells could take over her bone marrow and give rise to my immune system within her body and reject her. Not simply that it might not take and we would have a do over. My immune system would reject her. Seems like a bad thing to happen, to be rejected by your own immune system.

Blood stem cells are removed from the donor in two ways either directly from your hip or by apheresis . In Laura’s case they used apheresis to remove blood stem cells from me and gave them to her after killing off her bone marrow’s ability to produce blood cells. Over a period of several days – my memory tells me four – I was given an injection of some growth hormone that told my body to make way too many blasts (precursors of various blood cells). These leak out into the peripheral circulatory system and can be retrieved by an apheresis machine. It was a miserable four days. Not so much at first but they can give you the injection anywhere and I opted for my arm. I am pretty sure that this started on a Monday so we were ready to do the apheresis on Friday. The had to get the blasts out of me before my body reabsorbed them.

The apheresis process takes a bit of time also. I do not remember talking about the actual process at the beginning. I suspect that if the donors are given all the gruesome details at the start, some will back out. The process was generally described as similar to donating blood except that the stem cells would be removed and the rest of my blood would be given back to me.

An innocuous drawing

In this sketch you can see the general set up. Blood is removed from one arm and the returned processed blood is put into the other arm. Pick your nose, pee and fart before you get started because there is no moving around once the machine is running.

I asked the nurse technician who was monitoring the machine approximately how long it might take and she responded with eight to nine hours for the first session. She said sometimes they do not get enough the first time so they have to do it again to get more stem cells. I intermediately got up to find the men’s room and empty everything out and began to worry about how long my bladder would hold out. In the end it was not a concern. I suspect my kidneys did not understand what was happening so they elected to take a break for a few hours. I helped by not drinking anything of course but there was a bag of saline as a part of the process and some blood thinners to keep my blood from gumming up the pumps. Nine hours is a long time to sit.

Making conversation I asked how many cells they were trying to harvest. Ten to eleven million came the reply. I remember thinking that seems like a lot but I did not have any idea what they might need to do this. I was curious how they would figure out how many they had and she told me they would count them. It is amusing when you think about it. how else would you figure it out. Isolate a certain quantity of serum and under a microscope count the stem cells. Well, huh. Even an engineer can do that.

With all the needles and tubes in the correct position we started. I think the first session was about seven hours or so. There was a clock, one of those battery jobs, hanging on the wall opposite where I was sitting. What a poor place for an ineffective time keeper to hang. After five hours I was certain that it had slowed down. After six hours I was certain it had started running backwards ever so slowly. At the seven hour mark the stem cell bag which I estimated could easily hold a liter had a tiny amount of yellowish life saving liquid in it. The nurse pronounced it good and Cheryl took me home.

Oddly I was incredibly tired. I had not felt this exhausted before. I had not moved all day. But my blood did. It had been in and out of my body about ten times during the day. It was wore out. As I rested in my chair hovering between resting and sleep we got a call from the hospital, I needed to come back again for a second session. How many cells I asked. About four million was the answer. A disappointingly low number, I was certain that they would need two more times. I may have said shit out loud.

On the second day the procedure the was much faster. I spent approximately four hours in the chair with the stopped clock view. Often the donor’s body wakes up and puts more cells out there where the apheresis machine can find them. But that is not really why I am telling this story. There were several times during the next couple of weeks when I was called to go directly to Hoxworth to donate other bloods products to Laura. Platelets mostly as I recall. On a couple occasions I gave Laura platelets. I may have given her red blood cells also but I am unsure of that. She was busy staying alive and I was trying to help. All of these experiences got me used to the activity of donating blood.

I started doing this at the main Hoxworth Blood center near UC Hospital in Clifton and then later discovered that I could do this at another collection center in Blue Ash, Ohio. Once when I was there donating, the nurse technician asked me if I had ever considered giving a double red. After a discussion of what was entailed and other questions, I tried it.

This is Laura’s legacy. Her brother became so comfortable with donating he continues to do it fifteen years later.


I often think about Laura when I am sitting in the chair listening to the apheresis machine do its thing. There is no stupid clock to stare at. I know now how long it takes. It takes thirty to forty minutes. Sometimes it takes longer because the technician is often monitoring other donors. Most often I read a book on my tablet reader. Occasionally I listen to the patter of conversation around me.

Hoxworth is actively soliciting folks who have had SARS CoV2 disease because their blood contains substances that can help those who are recovering from that disease. These folks sit across from where I am donating.

Over the weekend the reward for donating was a free T-shirt. Free t-shirts were the give away today, Easter Monday also. I selected a St. Patrick’s Day themed shirt. It is in the picture.


Laura’s recovery was long and arduous and fraught with disaster. She spent about six weeks in a coma as doctors tried to discover the source of her liver inflammation. Veno-Occlusive disease was the suspected culprit.

Hepatic Veno-Occlusive Disease (VOD) AKA: Sinusoidal Obstruction Syndrome is a well recognized complication and leading cause of mortality in hematopoietic stem cell transplant resulting from severe hepatocellular necrosis and hepatic vascular congestion. — This is from a medical teaching website. Laura and I both read about it in a big white binder that she had gotten at the beginning of her process. I remember her looking at me that first afternoon with her yellowish face telling me that there was about a 3% recovery rate. Pretty crappy odds she said. She was a CPA and the controller of a small successful beverage distributor. She knew about numbers analysis and crappy odds.

It was not that. Eventually the doctors discovered that Laura was having a bad reaction to the antibiotics given to her as a prophylactic to infection while my stem cells were taking over. She did recover but six weeks asleep devastated her body. During a visit at the holidays she told me that my stem cells had populated her bone marrow and was doing fine. A few weeks later she succumbed to pneumonia that could not be treated in the conventional way because of her problems with antibiotics.

Laura died with a part of me in her. Part of me died when she passed out of existence in early 2008. Watching someone whom you worked so hard to save take their last breath is a profoundly life altering experience. I hope to never participate in an experience like that again.

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

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

Bernard Clayton’s Bread Book

Potato bread

This book is a favorite of mine. If I remember to do it when I make mashed potatoes and something for dinner, I save the potato water and leftover mashed potatoes to make bread a couple days later. Two nights ago I remembered. I saved the water that I boiled the potatoes in. In his recipe he strongly suggests not adding anything to the potatoes.

Having gone through a couple of recipe cards from Hello Fresh recently I have decided that I like mashed potatoes made with sour cream and butter. Some of these were left over. I have about a cup of mashed potatoes. I used these. I am interested to discover how that modifies the flavor.

I have made this recipe with plain potatoes and with mashed potatoes in the past. Baking bread is intriguing for me because it seems very small changes to a recipe can make very large changes in flavor. Try it – grease one loaf pan with Crisco and grease another with lard. The flavor difference is noticeable. Very subtle but also very different flavor in the type of release agent used.

The round loaf goes to a neighbor who made a tuna noodle casserole out of the blue and gave it to us. She supplied it in a large ramekin bowl so I used it to bake the boole in. I hope she likes it. Potato bread makes hearty french toast.

If you can, bake something every week. Life is a one time deal but better with fresh bread!

Spring is here — FINALLY!

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!