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.