Just that. But it's just so hard. How am l ever going to be able to relax in life again, when l don,t know what is waiting for me. If l relax and then it comes back stronger than before it will be overwhelming again.

My husband doesn't,t believe l have anything yet, l guess his denial a bit, but for me hearing and reading how the disease progresses over time is very, very frightening. Its always nice to hear people get better as they age, and not go downwards. I just don,t want to get out of bed one day and not be able to walk or enjoy my life. I don,t want to make a big deal of it either, and l didn't,t at first until l realised how bad it can get.

So even though l try desperately hard not to think about, my mind just wonders back. Even in the middle of the night.
I,ll be doing something else and catch myself thinking about all the information l have read and my symptoms. I feel like l am going mad at times.

Sue