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So just yesterday I wrote about the study Ralph has agreed to participate in to study the effects of a new drug that might inhibit the plaque build up that leads to Alzheimer’s.
This morning over coffee we were having a perfectly normal discussion of the news, what to have for breakfast, etc., when I mentioned to Ralph that maybe I should cancel the check up appointment with his internist coming up this week since he would be getting checked so thoroughly through the study.
He looked at me and said, “What study?”
I have probably mentioned that Ralph’s memory issues have a silver lining, that he particularly forgets any moment that has produced anxiety or unpleasantness in his past—in other words any argument he has had with anyone, any disappointment he suffered in the past, any moments of tension or distress. Evidently, he has forgotten our trek last week because it was anxiety producing–which is fine because if he ultimately gets rejected he won’t care, and if he is accepted and has to go through more tests and appointments, each will fade as soon as it’s over.
For Ralph and me at this point in our journey, participating in trials and studies concerning Alzheimer’s is always win-win, but it is important to recognize that participation in experimental studies is a very personal decision and not the right decision for everyone or every situation. When Ralph was first diagnosed, we signed up for a trial that involved one and one exercises; it didn’t go well. Rick hated the questions and resented the process. Later, when he attempted an MRI for another possible study, we encountered the bb pellet problem. [For those who were curious, Ralph’s parents were very lax about firearms and allowed Ralph to have a BB rifle when he was around six. I picture him as a tow-headed little “woods booger,” as he called himself, in his favorite cowboy shirt–which he still has–chasing after birds and squirrels until he promptly shot himself in the tongue (luckily not the eye). His parents may or may not have taken him to a doctor, but nothing was done. Ralph forgot he had the BB until a dentist noticed it on an x-ray thirty years later. Rick said his mouth got quite hot during the MRI, and the pellet distorted how the MRI works, making it unreadable.] At some point I talked to a social worker who pointed out that no one should ever feel pressured to participate in studies and that health and emotional well-being come first.