Month: July 2023

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