Hi all,

Thank you for contributing to this forum I have found it very useful. My heart goes out to all those suffering.

My dad is 73 and he was diagnosed with bulbar onset 4 weeks ago. We now think symptoms existed 18 months prior and he saw lots of specialists and lots of other possibilities were investigated. After sudden weight lost, right hand muscle wastage, slurred speech and swallowing issues he was sent to see a specialist and given an immediate diagnosis. He has his erg muscle test soon and results 7 days later .... will this test give more of an idea of life expectancy?

With dads above symptoms they seem to be getting worse and our mnd nurse said they may get worse due to the shock of the news and slow down. Dad is walking fine and he can still use his hands. He is eating very well and trying his best with his proteins drinks to maintain his weight.

I appreciate every case is different but I need some hope has anybody had these symptoms and still living past a year. Iím sorry if this upsets anyone but for our family it feels dad is dying fast and I would love to hear stories of people living with bulbar onset

Many thanks