I had volunteered for the Groundbreaking NIH-supported study expands, seeks new volunteers and felt really good about it. This project gave me a sense of meaning and purpose around the diagnosis. But the folks running it made a mistake.Actually, they've made a number of mistakes along the way, but up until today, no big deals.
They did not tell me (confirmed by my sister, who has been with me at each appointment) that I was NOT to start any new medications during the initial part of the study. They did not tell me to wait JUST 30 DAYS (which I would have gladly done). Both my sister and I heard them say I must report any changes in medications, but not that I wasn't to change or start any. YAAAAARRGGGHHH!!!
My neurologist (whom I trust) started me on generic Aricept two weeks ago. He believes early, aggressive use of this and Namenda MAY (maybe maybe maybe) slow down the progression.So I'm out of the study for now. I could begin the study again if I put off taking Namenda, and there's a chance I could start the study again later this year, but my son and I are going to Ireland to celebrate his birthday in October.
So here are the choices:
- Following my doctor's recommended medication schedule (which may, or may not, slow down the AD progression) and standing in the soft Irish rain with my son celebrating his birthday. Perhaps writing an article "Traveling with Cognitive Impairment -- So What If You End Up On the Wrong Train -- Ireland Will Love You Anyway"
- Not following my doctor's recommendations due to someone else mistake and participating in a study (for which I am only one of many volunteers) which may not even be relevant one year from now, considering other research that is underway.
