Families don’t understand

June 17, 2010 at 2:18 pm

Hi Alive & Blessed ;

I echo the comments of the others on the forum. You are fortunate in that you found a neuro who recognized your condition.
My husband is now 5 moths into this and has had no treatment in Canada yet. He did get 5 days loading does in NYC .We found a wonderful Neuro there but the cost was all out of pocket.

As for families- can anyone provide a reference for literature we can give to our families? None of them understand the disease and think that he should be doing more in order to get better. They don’t understand it is not like other illnesses…

Thanks and hang in there Alive & Blessed.

Kathy