Welcome, Sue. First, I am very sorry to have to type those words. But welcome nonetheless.
In my opinion, control is a bit of an illusion, even for those who are not afflicted with a debilitating disease. What do we really have control over? We really can't control other people or, in many cases, the situation we find ourselves in. What we can control is how we accept and adapt to those situations.
I have chosen to live every day to the fullest, using adaptive technology of any and all types to get the most out of life.
While I can still walk a bit, I have been using a wheelchair for over 2 years. I can no longer ski on regular skis, but I ski with an adaptive biski. I bought new kitchen knives that fit my hands and allow me to continue to slice and dice as my hands get weaker. I can no longer sharpen those knives using a japanese waterstone (as I have done for over 30 years), but keep them incredibly sharp with an electric knife sharpener (which I vowed for decades I would never use).
I am very careful about limiting my activity so that I can preserve the functionality I have for as long as possible.
Yet, with all those actions, I accept that someday I will lose my ability to do things. That acceptance has allowed me to get great joy out of every day, even the rough days.
As for books, I have found great solace in the bible, particularly the book of Job.
Steve