As we walked a mile back from Universal Studios to the trolley stop Cindy suddenly declared: “I think they are getting better.” This was the first time she confessed to getting better in regards to anything since we hiked across the country in 2011-2012. Back then she claimed her mind was getting better. I asked her if she was referring to her legs this time and she confirmed my guess.
I suspected she was referring to her legs because over the past few months she had complained about them a couple of times. What she described sounded similar to cramps but I took this to be another sign of degradation related to Alzheimer’s. Since we’ve been down here in Florida my Google Alert for Alzheimer’s has been flagging the recent discovery of severe side effects affecting the muscles from use of the generic drug donepezil, or Aricept.
I had doubts about the effectiveness of Cindy’s medications, donepezil and namenda. The literature confirms that these medications do not work for everyone, yet with Cindy and her mother as former nurses I was not going to dismiss drug treatments, despite my skepticism regarding the for profit basis behind drug tests.
Hiwever, I already had circumstantial evidence that at least one of Cindy’s medications might not be good for her. Back when we had the dog Bailey I had to fasten the leash on her collar for Cindy before she could take her out for a walk. On four occasions Cindy managed to put the leash on herself, on each and every one of those occasions we went out to eat the night before and I forgot to give her medications when we got home.
The recent discoveries about Aricept sealed the deal for me. I figured Cindy’s recent trouble with pain in her legs was related to the drug. They were not a severe side effect that the press releases revealed happened in only a few people, yet where there is fire there is smoke in this case. The mechanism of action to cause severe side effects in a few must also be capable of some effect in all. I stopped the donepezil (Aricept) cold turkey, not to improve Cindy’s condition but to prevent her muscles from getting worse. A few days later, without my prompting or even giving the matter any further thought, Cindy announces out of the blue that her legs are feeling better. Coincidence? I think not.
Yet what about her brain health, the purpose of the drugs in the first place? Is it worth sacrificing another part of the body for the brain? I would say no, if the overall quality of life declines. There are few parts of the body more pertinent to Cindy’s quality of life than her legs. Fortunately, I don’t think there is any sacrifice involved, as I had no experiential evidence that her medications were working in the first place.
Other changes I’ve seen in Cindy since I stopped the donepezil suggests that her brain health might be improving. I’m in the habit of repeating things now, such as letting Cindy know about the blizzard going on back home. The past couple of days Cindy responded a few times: “Did you tell me that already?”
There is a flip side to this. Last year when we were in Orlando Cindy occasionally was overwhelmed with sadness, just a couple months removed from her devastating diagnosis of Alzheimer’s. For our first week down here this year I detected no sadness. She appeared to be in more of a fog instead. Over the past few days Cindy appears to be more self-aware of her affliction again, with an occasional sadness that comes with that realization. Is this a worthwhile trade-off? I will lean towards anything that leads Cindy to claim she is getting better.
I don’t present this “drug test” as definitive proof that donepezil degraded Cindy’s health the past few months. Yet this does confirm my long standing belief that our tendency towards giving medications the benefit of doubt should be replaced with administering a burden of proof.
