MK-8931 and 5776

For the last two years, J has participated in the clinical trial of a drug that may help patients with mild to moderate Alzheimer’s disease. The drug has the lilting, original name, MK-8931. It reduces levels of amyloid beta, an amino peptide that is present in the plaques that develop in the brain of Alzheimer’s patients.

Of course we don’t know if MK-8931 works, and we have not even known whether J has been getting the drug or a placebo. What we can say is that J has knowingly been living with Alzheimer’s disease for six years, while the average life expectancy after diagnosis is seven years. Life expectancy is even shorter in early onset patients like J, who is now 64 years old.

Participating in the clinical trial gives J a sense of contributing to something greater than herself. Even if the drug doesn’t help her, she is assisting in important research. It also gives her pocket money, since we are paid $50 for each visit.  She is always pleased when we use the gift card we are given to pay for evenings out. And it gives J a relationship with a doctor and a clinical coordinator and a psychologist, each of whom is a lovely, caring professional.

Being part of the study does subject us both to difficult questions we otherwise wouldn’t have to answer, or at least not as frequently. How do I reduce my nuanced observations about J to a grid of whether she uses kitchen appliances independently, with supervision, or not at all?  I suspect J hasn’t used the microwave or toaster oven for many months, but I work full time and she is home. How do I know?  I know she uses the coffee makerMat home, but she tried to make coffee without water when we were on vacation at a beach house the week before last.  Which box does that fit into?

Participating in the trial also can provide documentation of J’s slide, which I might rather not know. The Mini Mental State Examination is administered at every trial-related visit. This test helps diagnose Alzheimer’s and assess its progression. J scored 25 when we started in the trial in 2013. A score of 19-24 indicates mild cognitive impairment. This time, J scored 13, near the bottom of the moderate scale and frighteningly close to severe.   She also lost four point in the last six months, a faster rate of decline than in the past.

Regular readers of this blog know I recently decided we need more help at home and the MMSE score reinforces that need. I am working on a flyer I can use to recruit a caregiver and hoping I find someone reliable and affordable.

In the meantime, we are about to start a new year in the Jewish calendar, 5776. I spent much of the day cooking to prepare for a celebratory meal. J happily helped form the balls of gefilte fish we poached today in homemade fish stock. And she served as chief dishwasher. I am certain she will enjoy having family and friends close tomorrow night.

In synagogue this morning, the Torah reading (reading from the Jewish bible) included Deuteronomy 30:19, where G-d places before us “life and death, the blessing and the curse.”  G-d enjoins us to “choose life.”  That is something J does every day. May we all learn from her example.

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