My mother was diagnosed with progressive bulbar palsy in August 2017. Devastated does not even begin to describe how we felt as a family. To have a diagnosis that has so little hope associated with it, I still find it hard to believe.
The whole family has reacted so differently with my brother truly believing that at first it was Lymes disease and now spends his time scouring the internet looking for that magic pill...I wish I had his hope but I don't. I look at how my mum is progressing, I read the prognosis and I know that this thing is only going to get worse, it is going to steal away from us our Mum, wife and friend. It's going to do it by slowing taking away the things we simply take for granted, eating, swallowing, moving around until she is trapped within her own body before inevitably she dies.
Trying to focus on the here and now without casting my forward to what the future holds is hard, because she is deteriorating before our eyes. What's happening cannot be denied. Right now I want to only focus on the today, to try and make sure we create as many memories as possible, to ensure my daughter spends as much time with her Granny as she can...but then my mind fast forwards and in the future is only sadness.
My mother has lived a wonderfully happy life that would be the envy of so many. She has been lucky enough to live well into 70's and I know this disease does not discriminate and other have their lives cut short so much younger. It's ruthless and relentless and I hate it. I hate what it is doing to my mum, I hate what it will continue to do and I hate that at the moment there is nothing that can be done to make this thing go away.
I know I am not along in these feelings and my heart goes out to everyone out there who sadly knows exactly what I am going through.