With this blog, I open the doors into my private life, my family life, as we face the greatest struggle we will (hopefully) ever have to face.

I am Victoria.  When I was 22, my mother was diagnosed with Progressive Bulbar Palsy (PBP). At Christmas in 2016, we noticed her speech was slightly slurred. In February, her GP referred her to the hospital, fearing she had had a stroke. On 12th April 2017, we received the news that Mum has Motor Neurone Disease.

According to the MND Association’s website, life expectancy for someone with PBP is between six months and three years.

This blog is partly about helping me come to terms with our new future, our new normal. It’s also about sharing my experiences, so other people whose loved ones have MND know they are not alone.

This blog is also very honest. That means, at times, it may be difficult to read. Most of these posts will be categorised under ‘Feeling’ – if you don’t want to view them, then that’s fine. But the truth of MND is that it is hard. It is hard for those with MND, and for those who love them. By sharing with you those times when I am struggling or despairing, I want to show to you that it’s ok to feel that way. That we all have those moments.

But this blog is also about more than just tears. It’s about joy. It’s about making the most of life, love, and family. It’s about the good times, as well as the bad. It’s about laughter and hope and a courage of a mother. My mother.

Please do reach out to me. I want to hear from you too.

You can read about our experiences from my mum’s perspective on https://angie1926.wordpress.com

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