My search for grace and meaning during a care partnering life with a wife with Parkinson's disease and her often confused and maddeningly disorienting world.
In my little book – The Hitchhiker’s Guide to Parkinson – I have a section where I note things that I have learned along the way as Cheryl and travel this road of Sam Parkinson.
Today it occurs to me that although I want Cheryl to get up and get going to exercise class because it appears to me that she actually likes this exercise class and although she got up late she still has time, suggestion is the only tool I have to motivate her. Any comments beyond – if you still want to go to exercise class you still have time – reminds her that it was her idea and answers her unspoken question of, is there still time? – are useless comments and could make her feel that I am being pushy.
If she senses that I am being pushy she will resist it every time.
Another technique that I use but often forget about is what I call bump and run. I can use the fact of her really poor short term memory to plant an idea.
This morning it occurred to me in addition to using suggestion as a way to get her thinking about getting up, if she did not I should just let go and not worry about it. I understand why it is good for parkies to exercise but she is not always interested. If she perceives it as her idea, she is in, if not, forget about it.
We made it
I realized that I can switch from encouragement to nag-o-ment if I do not pay attention.
The drug for nausea – Ondansetron – seems to work very well. I have adjusted when Cheryl takes it a bit. The instructions merely say three times a day and at first I interpreted that to mean 7AM, 1PM and 7PM which are normal times for her to take meds. For the past couple days I have given her the evening pill at about 5PM which is 45 minutes to an hour before we would ordinarily eat dinner. It seems to be working for her. I have repeatedly asked her about stomach issues and she reports no issues with her stomach.
This report – no funny stomach – is very encouraging since it has been her main complaint for months. I can empathize. Over the past couple years she has lost approximately thirty-five pounds of weight. The dyskinesia puts her body in constant exercise but the combination of no sense of smell and a slightly uncomfortable stomach keeps her from eating much. (During this whole time she has not vomited but as she says, it is right there.)
Quetiapine Fumarate – 25mg
The drug used as a sleep aid – Quetiapine – might or might not be working as hoped. She is prescribed 1/4 of this little pill before bedtime (10PM). Shown above it is approximately 1/8 inch in diameter. We have a pill spliter but these are not scored for cutting in half as many pills are and certainly not scored for quarters.
The first night she took this she slept completely through the night. This was the first time in approximately two years. The second night she got up once. The third night she got up once and seemed restless for a bit when returning to bed. The fourth night was similar to nights before she started taking it. I am not convinced that she is getting the same dose each evening, so I will find a way to slit these tiny little pills as uniform as possible.
An update: Last night seemed better. She used the walking frame for stability. Only once.
Quetiapine was developed in 1985 and approved for medical use in the United States in 1997.[6][9] It is available as a generic medication.[10] In the United States, the wholesale cost is about US$12 per month as of 2017.[11] In the United Kingdom, a month’s supply costs the NHS about £60 as of 2017.[10] In 2017, it was the 76th most commonly prescribed medication in the United States, with more than ten million prescriptions.[12][13]
This website Drugs.com has pictures and characteristics of everything.
Adjunct_Wizard 