Hello Carolynbmaes, I just got up and got your request to be a friend in difficult times. And I searched for your husbands condition. It is quite difficult for me to understand what he has and I feel so sorry for you to be on your own to deal with it. It seems to be such a rare condition. The only advice I can give you is to look after yourself as well. Treat yourself with things which make you happy. I hope you have family and friends which can relieve you from time to time. I am thinking of you. Lots of love, Christine