It’s 12 years this month since I was diagnosed. In 12 years I’ve seen four neurologists, all of whom have trotted out the word mild. I took that to mean there’d be little or no change for a long time. It must also be about 12 years since George Good predicted stem cell treatment would be available in 5 years. In 12 years the deterioration has been relentless. All four have also trotted out the line, “there’s no cure and no treatment “
The NHS have provided crutches, bed handle and wheelchair voucher. I’ve had no help with adaptations, so we have no savings left. In these days of cutbacks Social Services have repeatedly refused to assess me. My husband is my sole carer, we have no family. He’s struggling too.
As of this weekend I can’t walk, feed myself, transfer unaided. We’re exhausted, I wonder if life is worth living.What did we do to deserve this?
My new year’s resolution had been not to come on this site to moan but I had to talk to someone.