12/7/11

12/7/11

Last Friday Bernie received his second round of Botox injections for his eyes. It had been 4 months almost to date since his last injections so that was good. Dr. Molho stated he was please that it worked for Bernie because he really hasn’t been able to do much for him until now, I think it frustrates the doctors too that there isn’t much they can do for a good percentage of the people with this condition.

It is equally as frustrating for us, I think it is hard for some people to understand that there is not much that can be done for people who suffer this disease, treating the symptoms is all there is at this point. In the 6 years Bernie has dealt with this we have tried everything we’ve read about or heard about. We have tried high doses of many different meds (per doctor’s instructions) which did not help and had side effects so lower more tolerable doses have been maintained. We have tried minerals, vitamins, herbs, and we added certain foods to his diet but no benefits were noticed. I spend many hours researching for new things to try, I maintain a healthy diet for him with fruits, yogurts, vegetables, and lean meats; I encourage plenty of water (which I have always felt Bernie did not get enough of) and exercise, mostly walking. Bernie still works out a bit on his bow flex machine but it is difficult for him to maneuver these days, it is a safe machine for him so I don’t worry too much, just about him falling as the machine is in the basement.

I’m trying to keep things in perspective while trying to follow his progression, maybe someday it will help someone else who is going through this. Maybe give them some guidelines, so hope some encouragement. I know I wish I had a place to go to read about someone else journey to learn and maybe find some hope.

Every time I start to post something comes up and pulls me away (like now) I am hoping to find some time where I can sit and write without interruption, until then……