equipment

A Great Time

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We went out with friends to a new restaurant. We had to be seated on the second floor. There was a ladies room on the second floor.

What a relief it was to us both.

Not the most appropriate opening to a story about going out to dinner with friends but parkinson makes the very small things in life into major obstacles. Those need not be obstacles but they can win out in the “Is it hard? v. Is it easy?” tug-of-war that enters the discussion whenever any social activity happens.

I have written about women’s restrooms and some of those experiences. This is not a blog post about that. This is a story about how truly graceful are friends that Cheryl and I have in our life and have had for half a century. It starts with an email from Jan in early December proposing that we gather for dinner somewhere for our annual holiday gathering. Cheryl used to refer to this group as the defunct bridge group because although we used to play bridge at our gatherings, over time we simply gathered for a meal and socialization.

Jan suggested a few dates in January and suggested collecting at her house or a restaurant somewhere. I immediately voted for a restaurant somewhere for two reasons; it puts the eventual clean-up in someone else’s bailiwick, it gets Cheryl into a social situation were she does not believe she is a burden to anyone. (Grace on Cheryl’s part, she does not want to be a burden.) And besides, Gary and Jan go to restaurants that we might never pick just because of unfamiliarity. She picked the Purple Poulet in Newport Kentucky.

In a later email after Jan had confirmed the reservation, she wrote that we would be seated upstairs and asked if that would be a problem to anyone (grace – Jan did not single us out). I did not respond to her email because upstairs by itself is unimportant. It does tell me what equipment I might need. It also tells me that I need to call the restaurant to understand restroom facilities which I did not do. (no grace for me) Somehow with our narrow life activities, I never got around to calling the Purple Poulet and asking about ladies restrooms. I am not shy about that idea merely incompetent in this instance.

Yesterday was January 20th, the day that had been previously selected for our dinner gathering. Sherry called to ask if we would like to come to her house late in the afternoon for a drink and we would leave from her house to go to the restaurant which was a thirty minute drive through the center of town. (Grace on Sherry’s part for offering extra time to socialize and catch up.) Sherry has a sister who also has parkinson as a part of her life. Her sister is living in an institutionalized setting but Sherry spends a good amount of her time there. Cheryl is comfortable in conversation with Sherry and Sherry understands Cheryl’s difficulty with mobility and mental agility.

After I accepted Sherry’s invitation, we discussed restaurant steps, parking arrangements and restrooms facilities and, oh bye the way, if steps and restrooms were a problem, why did I not speak up? (She left out – you fool!) Sherry is too polite for that last part. She did start dialing the phone. Pretty soon it was all settled. We would meet at her house and ride to the restaurant in Gary’s GMC Acadia. (Grace to Gary and Sherry.) Sherry suggested that if the Ladies was downstairs which was my fear, we would just deal with it at arrival. (More grace to Sherry – her words – I’ll just tell Cheryl I have to go and we’ll go together when we get there.)

I managed to get Cheryl to Sherry’s house before everyone so that I could put our car deep into her driveway and out of the way. I was successful and the evening was all set. Denny and Katy arrived a few minutes after us. Gary and Jan arrived shortly thereafter. Sherry had drinks and snacks. For an hour or so we were surrounded by just friends not Parkinson. What a relief it was to us both.

It is not often that we acknowledge the kindness and graciousness in our life. There is no excuse for that. Many explanations but no excuse. This group of friends surrounded us with love and kindness and helpfulness and grace. For a few hours we, Cheryl and I, could just be. (Thank you, all.)

About the Purple Poulet; I linked their website to the first mention of them above. For me at least and I think Cheryl would agree it was a great dining experience. The restroom on the second floor was marked Ladies on the door near our table but was in fact a well appointed handicapped restroom. I have been in many. I know.

The steps turned twice and had handrails on both sides. If there is no elevator the next best thing is handrails on both side of the steps and a gentle slope to the stairway. Up is never a problem for Cheryl. Down, however, is a perceptual problem as well as a physical one. A short gentle run of steps is much less intimidating than a long or steep straight run. (grace to the stairway designer.) I have not gone down a set of steps with Cheryl forward for many years. (Sherry managed the walker while I was helping Cheryl manage the steps down – grace to Sherry.)

We both had their chicken. On their website they claim “The Best Fried Chicken by Southern Living” – It was the best fried chicken I have had in quite awhile.

This morning Cheryl is still sleeping. I am not but I should have skipped that second glass of Robt. Mondavi that I allowed myself because I was not driving to and from the restaurant. (no grace to me – grace to Gary for driving)

Carpe – the best fried chicken – Diem.

And surrounded by grace is another reason to stay connected.

Grace to you, Denny, Katy, Jan, Sherry and Gary for letting us simply be us.

Women’s Restrooms

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Women’s restrooms are never handicapped accessible even when you think they are and the provider thinks they are.

The Ladies room at Through the Garden restaurant (which we go to often) is a pretty good one. Cheryl did not get trapped with her walker last night. The door hinges into the restroom and it is nice and wide.

The Silverton Cafe which is a wonderful old pub that we have gone to for decades has a sucky-wucky ladies room. Cheryl got trapped in the stall. A coat-hanger would have been good.

The public restroom on the first floor lobby area south in St. Elizabeth Ft. Thomas has a really swell feature. I has a handicap wave pad that opens the door mechanically when you wave your hand at it. It also has motion sensitive lights which turn on when you shove your walker in but waits a few minutes and turns them off leaving you sitting in an inside room without windows or any other lighting which makes it blacker than the inside of a cow which is also not not nice. Almost a great idea though. Needs a little tweaking.

As we travel the road of parkie dilemmas I have visited a lot of women’s restrooms lately. I am not shy about shouting “doing okay?” through the door and opening the door which usually interferes with the walker coming out. Often you will see me hovering near the ladies room door when we leave the restaurant or pub for the evening. I try to not look creepy.

Most seem to hinge inward but the door is conveniently (for the builder) located in a corner so that you cannot be off to the side with the walker to open the door.

A few designers are thinking here and there. It is sporatic though. Old buildings are the worst. Restrooms do not make any money for pubs. All guys need is a bush.

Carpe the restroom Diem.

Reminders

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Today I have taken notice of the necessity to remind Cheryl what she is doing and where she is going. On this particular morning I have reminded her that she was going to change clothes for exercise class three times so far. Once she is away from other distractions I relax a bit and wait for the next reminder time.

Today’s list of events

Starting sometime in May after I was into my care partnering seminar I started to post the days events on this handy piece of white plastic left over from some project. I read an article that gave some tips for helping those who are struggling with dementia. It spoke of using a small erasable white board to post events somewhere. There is one on the wall of every hospital room I have been in for twenty or more years.

I had this and it works for me. I even had dry erase and wet erase markers leftover from my teaching days. They were not dried up yet, so, I was set for awhile. Since May I have had to order more markers. This one is near the end of its useful life.

The family calendar became less and less meaningful overtime. Cheryl is no longer able to discern what week or day is applicable to today. I started transferring the days events onto this board the night before I went to bed. She reads it the next day and looks through the newspaper. Even though the date is printed at the top of the newspaper she cannot relate it to the date for today.

Dementia, confusion and memory loss is annoying to be sure but the silver lining is every day is new and fresh.

Carpe Diem.

Organizational Techniques

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This is such a good story I am unsure where to start. Had I been more alert to how Cheryl treated this book I could have foreseen the difficulties that eventually came to her and became much of my daily life. But seeing how she treats it now is unimportant and I flatter myself into believing I could helped her if I had been paying careful attention at the beginning.

About three years ago – certainly prepandemic – Cheryl was struggling with her birthday card organizational techniques. She had several old books of names. One of these was left to her when her mother had passed from this life to the next. When a new month was approaching she would collect these to her in her office in the evening to make a list of folks whose birthday was coming to buy cards.

When her mom was still alive she would take Elaine to the Dollar Store to buy cards to send out. She took this over in time for her mother and eventually kept it up after Elaine passed away. She did this, of course, in addition to her own birthday card list. So, one evening I noticed she had several old handwritten books that she was looking through to discover whose birthdays were coming next month.

She had entered much of this same information into an Access database that she had created during her working career to help her and her mom keep track of things in an organized and businesslike manner. Cheryl was an extremely organized business woman. The most disheartening thing for me to watch as this disease progresses is her loss of organization and control. If the disease was merely physical it would, I think, be easier to deal with.

Nevertheless I put on my engineering hat to help with different methods to enhance and at the same time add ease to the organization of the birthday cards. In a second career as a high school science teacher which never completely panned out, I discovered a wonderful organizational tool that teachers use and might very well be adaptable to Cheryl’s needs. Teachers use a weekly planner to help with organizational tasks and as I discovered with my small experience, to keep track of how far behind you are with the course material. Usually these are dated with the year but at Staples I found a wonderful version that in addition to having only two days per page was lined and printed in a 8.5 by 11 format had no year printed. It could be a yearly calendar of birthdays, anniversaries and other information without concern for the year or day of the week.

The doomsday algorithm would give you the day of the week. Look it up. It is pretty neat.

She had been struggling with organizing the birthday cards. I suggested she use this yearly planner. In the store, she agreed that it could be a useful tool to organize the activity. I was proud of myself for finding such an elegant solution to her dilemma. Being the ever helpful hubby I produced from her Access data a list that I could put into Avery’s online printing tool and produce the information for the dates that were known. New information would come along with use and could be added by hand as the years evolved.

Almost a good idea but my idea therefore NIMBY and NIH reared their ugly heads in unison. And I, not to be defeated, began to defend my method to a woman who spent her working career in computer databases and systems analysis, as she, slowly crept into memory loss, confusion and dementia. What a hoot! I completely and totally missed the AHA when it went by about two years ago.

How to help without helping? I continued for many months to reconsider and think about how to make the Big Black Book useful to her. In her old multi-book system she looked at a single page to discover who had a birthday that month. An index my engineering mind shouted at me. You forgot to make an index. I thought about that for awhile and realized that the planner was organized by month, not day-of-the-week, not year, only day of the month mattered. It was self indexing. I was at a loss as to how to fix her thoughts.

I quit concerning myself with instructing her on how to use it. I just rolled with her confusion.

Over time the preoccupation with getting out the birthday cards dissipated. Other thoughts of how to help her organize it left me. I became an observer. She always tells me, if I don’t do it myself I can’t improve. She is right. I am merely her aide.

Carpe Diem.

Decision Making is Hard

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In Cheryl’s case,  decisions can be remarkably difficult. They are made worse by deadlines. Lack of understanding of the day or next event add on difficulty. The decision to day is – what to wear?

Parkinson is a big enough trial when it is only a mobility issue.  When cognitive function is affected. It is just plain harder. You as a care partner can help with calmness or not. That thought sent me off into mindfulness and discernment about how to help by not emphasizing the time.

Today is the date of the Sunflower Rev it up for Parkinson’s symposium.  It is an information and exercise presentation by UC Health in Cincinnati.  And we are getting a late start.

Although we had talked about it last night before bed and I had emphasized getting to bed on time, so that we could get up on time. Admittedly this morning I cared little about going to the symposium but it is a useful thing to Cheryl and occasionally I learn something new. When the alarm went off she awakened but showed little interest in getting up. After some reluctance I encouraged her to get up and have some cereal to get started.

The wild enthusiasm for life, a better life with Parkinson can be intimidating to those of us who through our new duties of care partner and might have been hoping for a more relaxed environment in later life. So when Cheryl started hinting at not feeling up to going I seized on it but perhaps a little to enthusiastically because she changed her mind with little time to spare and we left. But not before I gained the opportunity to point out the lateness of the hour.

Thank God for the great science interspersed between the impromptu exercise. The lecture portion is familiar and reminiscent of many college courses from my earlier years. Bliss.

In a presentation about new chemicals and old standard chemicals I notice that most have the same set of side effects.  The side benefits seem to alternate between diarrhea and constipation, insomnia and narcolepsy, yadda yadda yadda. Of course the doctors and scientists would prefer that patients not focus on the side benefits but those are still there whether you ignore them or not.

A gentleman told his personal story about PD and his journey. Being an ex-football player and wrestler in college he was attracted by the various boxing style PD programs. Rock Steady Boxing was founded in 2006 to empower people with Parkinson’s disease (PD) to fight back through a non-contact, boxing-style fitness regimen and emotional support. The program started in a tiny gym in Indianapolis, Indiana. His coach told him – If it is to be, it is up to me. (Inspirational) He and some others have formed a group – Romeo (retired old men eating out).  Social gatherings are important . One can never give up.

There are things you can do that will make things easier like, no button down shirts.

There’s no hope without data reported Kim who is a research scientist. I like the science. I hate the disease. I do not know where my attitude is today. Perhaps it is still in bed thinking about a Saturday sleep in and then a visit to my son’s house for the fantasy football draft festivities.

But it was worthwhile going.

Carpe Diem.

Let’s Clean!

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It is easy to tell when Cheryl is feeling good. She will start cleaning.

My go-to cleaning person is my niece, Natalie. She comes over for a couple hours every other week and dusts everything, mops floors, runs the vacuum.

I tease her about touching all my pictures and stuff. I do not watch her every move. I pick up all the towels and throw them in the washer.

But at other times, when Cheryl is feeling good she cleans for awhile. I suppose it makes her feel useful. When we were younger and she was without parkinson she would clean at random intervals. I think it was a calming mindless activity to her then and is a familiar activity now.

Carpe Diem.

PT Goals

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Ten meter walk – How fast does it take to go 10 meters? (36 sec) The metric system is everywhere except in American society.

This U-Step is  a great walker. Why don’t you use it inside? It is a great question from the physical therapist. When I first brought it into the condo it merely sat next to the dining room table until we went somewhere but in Cheryl’s defense there are a lot of close by things, chairs, tables, half walls, door handles and grab bars that she ignores the walkers during the day unless she is feeling very unsteady. We have had a standard looking walker for quite some time. She worries about bumping into things.

We do use it when we go anywhere away from home. The wheels track in what ever they got pushed through elsewhere. I do not care about that. It is old carpet on the floor. It cleans up good when the carpet cleaner folks show up. It is just another maintenance item for the budget. I can encourage her but usually it sits by the dining room table. – This goal is use the walker more for safety.

Sit to stand – scooch forward, lean forward… like a rocket ship… push up off the arms of the chair. Stand to sit – lean forward and reach back, hold the chair and sit. The PT person provided this as a recipe for standing up. I have helped her with this at home but when we start it from a sitting position I can she her become anxious about making a mistake and “getting up wrong.” I am unsure about how to help her past this feeling.

Balance 7/56 — I took this note but I am unsure of its meaning now. I think it is intended to mean that of several tests for balance (56) Cheryl has a poopy score for balance. She has to think about balance. In most of us it is an autonomous function.

Difficulties with balance and walking are linked to the brain changes that take place with PD. For people who don’t have PD, balance is automatic, a reflex. But Parkinson’s affects the basal ganglia (a part of the brain essential to balance). To compensate, the brain assigns another brain area — an area used for thinking — to take over. The thinking part of the brain, mainly the frontal cortex, can’t control balance automatically. The result: for many people with PD, balance becomes less automatic.

https://www.parkinson.org/blog/research/Walking-with-Parkinsons-Freezing-Balance-and-Falls

more exercises

Stretch – lay like a T shape raised knees over to one side back to middle – one side then the other.

Sit on a chair – Reach up open the chest – bring arms to horizontal – twist trunk to one side and then the other with arms outstretched.

Carpe Diem and many trips to the PT experts. Next up – Occupational Therapy.

Boosted against Covid

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In my never ending battle to keep us safe and healthy and because Cheryl kept pressing me to do it, I scheduled us for a second booster shoot for the covid virus yesterday.

I got some chicken out of the freezer for dinner and helped her get moving in the morning. The morning was busy for me because it was my last care partner class. From that I have a mountain of valuable information about various service providers for the future. We are not there yet but in a few years we will be.

Linda appeared a little early and we chatted for a bit and then I was off to class. When I returned Cheryl had gotten cleaned up and dressed herself. I think the big new bed is giving us better rest overnight.

Our appointments at Walgreens were scheduled for 4 PM and 4:10 PM. We got to the store with plenty of time to fill out forms and prove who we are. Except for me. I had forgotten my wallet and ID. (Alas and drat!) As Cheryl came down the aisle pushing her U-Step walker I explained that I had forgotten my wallet. I asked her to sit down near the pharmacy desk and I would return in a few minutes. This Walgreens is about 5 minutes from our house. I zipped home and back to the store. When I returned she was sitting in the chair filling out a form on the clip board that the pharmacy assistant had given to her. Ordinarily this small task would have been confusing and incomprehensible to her. She had even found her ID and previous covid info in the purse of many pockets. I am beginning to understand that much of her confusion and mental fog of late may merely be poor sleeping patterns.

It is hard to overemphasize how important good sleep and rest is. The big new bed seems to help. One less Carbdopa/Levadopa CR seems to be beneficial also. She seems brighter during the day and not so inclined to pund around in her office at night. She is sitting in her recliner with me to watch a show or read a magazine article more during the past couple weeks.

She had plenty to eat at dinner. She even complained that I had not made gravy to go with the chicken. It was a normal (mostly) conversation during dinner between two people who had been married for 53 years. (Smiley face here) Later in the evening she felt a little chilled. I went to recover her sweater from the backseat of the car where it had been warming in the 90 degree heat for several days. We sat for a bit longer and then she got ready for bed. She returned and we watched the PBS show NOVA for an hour and we went to bed at 11 PM.

We were up again at 1 AM until about 3 AM. I am going to blame the booster shot. I was having difficulty also.

Today we slept until after 9 am. She seems rested. I know I am. It is off to the doctor today for our semi-annual wellness check. I feel well. She seems well.

Carpe Diem

Punding

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The need to do something, anything even if it is a mindless thing is referred to as punding. Parkinson seems to generate this need in many of its participants. It is generally harmless until it gets in the way of other things. Here is more from the Davis Phinney Foundation website.

Cheryl does this at different times. It used to drive me crazy and sometimes it still does if she starts up immediately before we are going somewhere. She often does it in the car with the purse of many pockets.

Carpe Diem.

Big New Bed Delivery and Nighttime Bliss

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The big new bed was delivered yesterday. I thought that I had paid for the removal of the old mattress, box springs and the bed frame. Apparently there are tiny variations in the language of such agreements that I did not realize and was not privy to. When did furniture or any purchase like that become so complicated. Even though I asked the salesman – Can you guys remove the old bed? – what he checked off and I did not question was – “Removal mattress and box springs – $99.00.” I forgot to ask about something that I knew nothing about. I should have asked, “And the old bed frame, headboard and footboard too?” He would have responded with, “That’s an extra $50” to which I would have said okay. Once I am making the switch lets go for it. It served us well for fifty or so years. It is merely a bed. It has no particular sentimental value. I remember when we bought the whole bedroom set thinking to myself, that is a lot of money ($1600 in 1979). Beyond any of those thoughts it has served us well. It is time for it to go. It does not fit our Parkinson life.

The mattress and box springs left yesterday. The headboard, footboard and frame assembly went into the garage. There is a lot of useless crap in the garage, like, I suppose, everyone’s garage. On another day I will rid myself of useless crap so there is more space in the garage. I will probably not paint anything in the condo on my own so why am I keeping old paint brushes? I also have an electric hedge trimmer. We live in a condo complex that although it is small we pay to have mowed and landscaped and trimmed. Useless crap it is.

Alas, we were probably the last delivery of the day. The young men were on the way out when I asked lets see how you left it. I asked them to move the bed about a foot closer to the doorway of the bedroom so that it was basically in the same place as the old bed. they did as asked. The delivery included a sheet set and I had purchased a set of mattress covers from Amazon as well as a quilt and shame set and blanket. The install team left me with a queen size mattress protector which I was not expecting but again, had I realized it was coming, I could have checked that the correct thing was delivered. I did not check that fact. The queen size mattress protector still sets on the dining room table awaiting the delivery truck to bring to correct item (which is probably not on anyone’s delivery list for today.) I am waiting to see how this all works out.

I am not perfect either! I ordered the correct size blanket from Amazon but I incorrectly ordered a queen size quilt. Woe is me. Amazon now uses Wholefoods Market for returns. There is one about two miles from me. It was a painless activity. Perhaps I will return to shop there. It is an alternative to Kroger which was there when the building was first put up and then got mired in some developer default controversy about ten years ago. Kroger moved out. The building was eventually completed. I do not know if the crane operator was ever paid. The crane stood idle along the highway for about a year while everyone traded paper and shouted at each other in court. Now it is where I return my oopsios to Amazon and there is a store that sells stuff to store stuff in. America has a lot of stuff. (Sorry I digressed.)

The first night was wonderful. Cheryl did awaken me to help her in the middle of the night but that was after she had gotten up to go to the toilet. I did not feel her get up.

After I got her up at 7 am for her first meds, she fell asleep deeply until I awakened her at 8:45 am. Bliss.

Carpe new bed Diem.