Author: AdjunctWizard

Some Days it is Tiring

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This week is filled with doctor appointments. My Saturday and Sunday was filled writing a lot of notes to her movement specialist through My Chart. My Chart is picky about the amount of information included in any message to the doctor or nurse practitioner so I write it out and then edit it in a plain text editor breaking it into usable and still readable chunks.

MOVEMENT – Cheryl seems to have more balance issues. She feels wobbly daily at various times during the day. She actually falls backwards to the floor or into another piece of furniture about once a week. She seems to get “stuck” sometimes when doing some chore but it is hard to tell whether this is physical or indecision about what to do next. Her voice seems have gotten softer and quieter. Her conversation disappears in a noisy restaurant.

SLEEP – She is generally sleeping later in the day. She gets up 9:30 – 10 am typically. Occasionally earlier but mostly later. I have adjusted most of her appts to later in the day. She talks in her sleep and occasionally acts out but no violent movements. She is incontinent (urinary) overnight – during the day she has little sense of when she needs to empty her bladder until it is an emergency. Her dementia seems to affect this – she does not think to do it periodically.

MEDS – Most days 5 out of 7 her 7 am meds are at 10 am. (2.5 Sinemet/1 entacapone/1 donepezil) Skip 10am dose. She continues every 3 hrs until bedtime (2 sinemet/1 entacapone). 7pm meds are 1 sinemet/1sinemet CR no entacapone. Bedtime is 10-11pm. quetiapine 1 1/2 of 25mg and 10 mg melatonin at 9:30-9:45pm. 10mg donepezil first in morning instead of night time to help with overnight incontinence. Midodrine 1st, 1PM, 5PM.

DEMENTIA – continues to worsen. Memory issues – finding names. finding words, occasional hallucinations and a sense of “others” nearby. Delusional ideas about moving in the evenings. Spacial ideas about upstairs/downstairs persist. (We have a one floor plan condo.) She sees lots of bugs both real and hallucinational. A new thing is the sight of a bird in our bedroom. (She may have a floater in her vision – Eye Dr. appt in Aug.)

OTHER – constipation is a big issue. Cheryl is very private and will not tell me unless I ask about BM. And then I sense she is merely trying to please me. I combat this with psyllium husk fiber in various things I cook for her and miralax in orange juice and ducosate sodium stool softeners. She sleeps better when BM happens.

… have other patients reported problems with the CR version of carbadopa/levedopa? Recently I gave her 1 CR tab after 7PM with her bedtime pills in the hope that she might be able to move easier overnight and get to the toilet. Cheryl’s reaction was to stay up overnight in a sort of awake dream – it was very scary .She has no memory of it. I give her 1 CR tab in the evening at 7PM – about 30-40 minutes later her dyskinsia is very pronounced especially if she is seated – she lifts one leg and waves it around. This does not happen during the day with her regular c/l.

MORNING ROUTINE – has changed a bit. I bought a transfer chair for her and used it to help her get to graduations, parties and a Florida trip. I may have gotten her used to riding instead of walking. I now load her into it from bed – to the toilet – into the kitchen for breakfast. It is easier to maneuver her around. It is really inconvenient in public restrooms.
Thanks for reading. – Paul

It is a summary of what we are dealing with day to day. As I am writing these notes to him I am thinking about how many patients he has and how he sees her for 30 minutes or so every 6 months. Each one of these paragraphs fits neatly into the My Chart format with a few characters left.

I hear Cheryl cry out from the other side of the condo while I am writing this. She has fallen again. She bumped her head this time. There is no blood. I have reusable cold packs from Walgreens.

Silver lining – she had been talking about going home to watch TV. That thought went away when I got her into the lounge chair to rest her head on the cold pack for awhile.

She is in frail mode for now.

Carpe Diem.

Hoping against Hope

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For many weeks about eight or so Cheryl has been aware of where she is at night. It all vanished tonight and I drove her around the reset block back to our condo and home.

A dark starless nightmare as I prayed the trip would take her mind home.

I found an old movie called “Nebraska” and we had been watching it for 30-40 minutes. Cheryl seemed to be following the story line. I believed that she was anyway. After forty minutes or so after taking her bedtime pills she announced that she wanted to go home. I clarified like always do with response- we are home. We went to church, then to a restaurant and came home to here where we live. To which she responded that she wanted to go to her “other” home. Her imposter syndrome had reared its ugly head.

I wonder what triggers this delusion. The movie dealt with early dementia issues in the main character’s father who read the clearinghouse sweepstakes mailer and believed that he had won a million dollars. He wanted to travel to Lincoln Nebraska to get his winnings. His son humors him rather than fighting his father’s delusional behavior and make a road trip to Lincoln. Things happen along the way as the story unfolds.

We have watched other movies and Cheryl merely announces that she is tired and wants to go to bed. Tonight she wanted to go home to bed. Tomorrow she will have no memory of this episode. I will not mention it. If she does we will talk about it. She will not mention it though. If she does it will be the first time.

Carpe Diem

A Little Surpising and Harrowing

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Parkinson is full of surpises.

Many maybe all of these surprises are attached in some form to the various meds used to stave off the effects of the disease. Many of these surpises are not Parkinson at all.

Cheryl falls over upon occasion and those occasions seem to be increasing in frequency. She always falls backwards. Always is a strong adverb simply by being superlative. Every time I have witnessed her fall it has been backwards. When she gets up from a chair and I encourage her to lean forward to put her upper body weight over her toes (nose over toes) she will only do that for the first short motion of standing her next thought is to lean backwards while pushing on the chair. She is afraid to commit to the motion of standing. There is nothing I can do to help. I will ask her if I can help. her usual answer is “No I think I can do it.”

No-I-think-I-can-do-it often causes conflict. Two things tug against each other my unwillingness to allow her to suffer in silence is pitted against her unwillingness to recognize she needs help in some situations or her unwillingness to give in to the handicapping disease. That is one third of her physical surprises – balance issues.

The other two thirds are urinary and digestive issues. Urinary issues are mainly overnight incontinance and a constant fear of daytime incontinance. This last is exacerbated by the inability to easily stand from a chair and her unwillingness to ask for help when her bladder reports to her brain that it needs to be emptied immediately.

Digestive issues are both physical – constipation and indigestion and mental – as in making menu choices or answering “What would like for dinner, dear?”

Parkinson is a complicated disease and that is complicated by the many this-will-cure-you charlatans out there providing help to the parkies who need it and would desparately like to be cured. Many charlatans are not on-purpose charlatans (I am willing to give them the benefit of the doubt), they merely have strong beliefs in something that has worked for them. Parkinson is not hopeless by any sense but it is degenerative. It is complicated. It requires more than a PhD from the university of Google to solve.

Hopeful

Carpe Diem

Today is Odd

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But I am glad it is over with.

Cheryl woke up super early for her these days. She was awake a little after seven this morning. I have to admit that I was a little disappointed because she had been awakening at 9 am or so. I began to treasure those first couple of hours from about 6:30 am until 8:30 am or so. Those are mine to do whatever I want to. Do the Wordle, chair yoga for old people, Quordle, blog a bit or think about life and drink some coffee. It is my time. I would check her and listen for her gentle snoring from the living area while I read or watched the early morning news shows. It was my time so when she was awake when I came by her side of the bed, I was disappointed and also elated that she was awake.

Early after she had a bowl of cereal for breakfast she had a short bout of diarrhea. Not a serious issue and as she typically is constipated as are others with Parkinson in many ways it was a welcome change. Not the loose bowels but the relief coming with movement. It made me want to figure out what she had eaten the day before to occasionally fit that into her diet.

The whole episode which I handled badly, got both of us upset. There seems to be no gentle way to clean her backside while she is struggling with balance issues. She kept complaining I was hurting her while I intended to be thorough all the time I was thinking about UTI’s, so, I complained right back to her about holding still. I apologized profusely afterwards.

After this episode in the front bathroom she went to the big bathroom to get further cleaned up. I suggested that she take a shower to top off my handiwork. I should have kept my mouth shut. She might have showered if I had not mentioned it. But I did not keep my mouth shut. Alas.

I left her to do her thing unaided. She actually was moving pretty good and seemed fairly stable. I checked on her about an hour later and she was dressed.

When I came into the bedroom though she reported that there was a bird flying around the condo. She had been chasing around the room. I told her that whatever she did it must have worked because I did not see the bird anymore. (I may not have told her that in a calming voice. I get nervous and upset when she is seeing things.)

The rest of the day was filled with wandering demented conversation about nothing. Occasionally she spoke about her childhood memories. She wanted to talk to her Aunt Jean and at one point carried on a conversation out loud with her deceased sister Janice’s picture. She said she wanted to talk to her mom and I suggested that we visit the cemetery.

We left to visit the cemetery. During the ride to the graveyard a discussion of George Ward and where he is buried ensued. George is a friend that I went to college with 50 years ago and he passed away maybe 15 or 20 years ago. He married a friend of Cheryl’s who we still have lunch with every few weeks. There is no telling where that thought originated in her head. It just pops up as do many odd and off-the-wall thoughts.

Back home before we went out to eat, I asked her a question about food and she told me two people were talking (in her head) so she could not hear what I said to her.

As I backed away from the garage and lowered the door she told me that the little girls in the garage were upset to be left there in the dark. I lied and told her the light would stay on after the door was down. The girls would be safe there while we ate at the restaurant.

How do I feel?

Exhausted. Carpe Diem.

Progress and Regress

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The whole of the Parkinson experience is measured in tiny little steps. Whether it progresses or regresses the steps are tiny.

This morning for the first time in several mornings Cheryl awakened with an alertness that I have not seen for weeks. I helped her from the bed to the toilet and then she walked herself into the kitchen for breakfast. The previous few days I had rolled he into the kitchen in the transfer chair I purchased for watching grandchildren’s graduations. It was marvelous. She did not move rapidly but she was moving by her own power.

Is that progress or regress?

Which side of the fence are you on?

Progress?

Today, this morning, her disease regressed a bit and she got up after a long night of sleep refreshed and able to move herself around.

Carpe Diem.

The Day You Are Born and The Day You find out Why

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The two most important days in your life are these two days.

I was watching a piece on the Sunday morning news magazine about a man who studies burrowing owls out west. He made the comment that I used for the title.

Makes one think. I have been thinking about it all day.

I have written many times before that I think my purpose for existing is to take care of Cheryl. I imagine that thought is prevalent in any long marriage relationship. We are partners. These days she needs a little more help than she did a year ago.

Many years ago I was the one who needed a little more help than I needed a year previous.

It is a partnership.

Carpe Diem.

It is Important to Listen

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Research study questions are I opening (I know you think eye opening) but I meant I as in me. Before the pandemic pandemonium Cheryl agreed to participate in a longitudinal study on Parkinson’s disease.

There is an initial evaluation of mobility and mental agility. There is a blood test, urine test and stool sample test.

Much of the mental agility data collection effort is question and answer style. Several different instruments are used, one of which is the Beck Depression Inventory. As Cynthia (study tester) asked Cheryl the questions and marked her answers, Cheryl began to cry. Cynthia decided to skip the test. She did the same thing with the MOCA test. Cheryl could not draw a clock last time she took it.

As Cheryl was using the restroom I remarked to Cynthia that this might be the last time that Cheryl would be able to come and participate in Dr. Espay’s study. It was not that I thought she did not want to, rather, her mind is gone to the point that she may be of no help to them. Perhaps I should not impose on Cheryl’s desire to help others. A year from now she probably will not remember this visit.

The Beck instrument starts with questions such as:

1.
0 I do not feel sad.
1 I feel sad
2 I am sad all the time and I can’t snap out of it.
3 I am so sad and unhappy that I can’t stand it.
2.
0 I am not particularly discouraged about the future.
1 I feel discouraged about the future.
2 I feel I have nothing to look forward to.
3 I feel the future is hopeless and that things cannot improve.

… etc.

Cheryl teared up on question 2. In each question the participant selects the answer that they feel at the time. At the end a score is computed that evaluates the participant’s depression. Cheryl’s emotional level was strong on the second question and Cynthia stopped the instrument.

I had not realized how this disease was weighing on her emotions. As the disease progresses Cheryl needs more help physically. She relies more on me and others around her. She is very resistant to accept help from others constantly. She gave up driving long ago. A big part of her independence left her when she gave up driving.

It has proven to be a very emotional disease. Cheryl becomes angry with me when I help her “too much”. We have been together too long for me to ignore her needs. I help her anyway. She gets angry with me. I get angry with the disease and what it has stolen from us.

And then my heart melts.

Carpe Diem.

Such a Wierd Disease

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Last night, Monday bloody Monday night, we had our support group meeting. Cheryl and I (mostly I) were put on the spot about our recent trip to Florida. We rode down with Anna and two of the grandchildren. I did not drive and I admitted that I missed a couple things and did not plan as well as I wanted to for the drive down or back. We survived the trip however and we both had a good time.

Everyone at the meeting wanted to know- how was Florida? Florida is HOT! is my response to that question. It is also humid, bright and sunny. The extra sunscreen that gets slathered on makes me want to shower every 20 minutes or so.

After our meeting Cheryl and I stopped at our favorite Dairy Queen for blizzards.

Ice cream if DQ can be called ice cream always perks her up. She seemed tired and frail at the meeting. At DQ we had a normal conversation and talked about where we are. Cheryl talked about wanting to become more involved in the search for a cure. I got a taste of regular life on our vacation. I told her that I did not want to have our entire social life wrapped around and totally involved with Parkinson disease. I get enough of that on a daily basis. It is frustrating and I love her but really do not want to make it our life.

We had a lucid real conversation about what we both wanted as we go forward on our journey through life.

Later she had a very hard time falling asleep and was awake until 4 AM. That is her Parkinson. On and off, up and down, in and out and completely annoying all the time.

DQ through the years…

I love her and want to do things not Parkinson.

Carpe Diem. (wierd is on purpose weird)

Home Now

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We are home now and I have been thinking about it all. it was a great trip. Are there things I could have planned better? You betcha but we adapted and got through it all.

Shopping
Gathering
Fireworks
Going home
Beach east
Wahoos game
Morning beach
The hat
Before setup
The other way
Good times overall

A few things that I would do differently…

And before I left I updated the Linux Gnome interface and for the first time in a year or so turned that computer completely off. Gnome is broken. That computer operates like an old DEC PDP 11. I have a project to keep me busy for awhile.

Carpe Diem.