Today’s guest host: my wife, Mary Piper; a person who often has a way of being more concise than I. Following is her thoughts relayed to a friend of her’s. While we do not mind the advice of caring people in our lives, her response sums up how we view the intersection of treatment resistant diseases like ALS and Alzheimer’s, and the people who want to be able to treat, and be treated for them (which is of course, all of us).
“Hey Mary, I hope you and David are doing OK. I just read this and wondered if there was any chance David could be eligible for it?”
Hmm interesting. David is pretty science-based on his willingness (or unwillingness ha) to try yet unproven treatments (which is all of them really). But even so, he probably would not want to spend his time enrolling in the program and spending time in medical situations as he is so far advanced – this year starts year 7 for him. Most live 2-5 years. He’s already lost almost everything that matters. We also have a problem with taxpayers funding unproven treatments as “hope for the hopeless” – probs sound strange but we are both pragmatic about ALS. Even if there was a cure discovered today, David would not be cured. We’d rather spend our time taking walks, leaf peeping, full moon seeking, having fun with friends and family, enjoying our mornings doing crosswords and reading the NYT. Living life not chasing cures. For those that haven’t progressed to David’s advanced ALS stage yet, I hope these treatments offer some benefit to the overall science. Whether they actually do anything is purely conjecture, but if any good comes from the money spent, perhaps it is to put to rest drugs that are ineffective so that money can go to actual research to unlock REAL progress.
Sometimes, when there are no good options: Don’t just do something, stand there. (joking of course)