Bulbar onset & the rest of my body

[Colleen15]

Hi, Bulbar onset ALS diagnosed March 2023. Speech is horrible & eating very slow. Age 67. How long have people gone still able to walk, dress themselves, bath, feed themselves, ie. Be self sufficient at home ? Thank you.

 

[Nikki J]

No one can predict for you. Everyone is different. Supposedly bulbar tends faster progression but I know people who went several years before they were paralyzed after bulbar onset. I also know people dead in under a year. Most people are somewhere in between.

We all long for a crystal ball. It may be that your neurologist will make an educated guess if you ask. But it would only be a guess. My neurologist did after six months and she was right but I know others have been given short timelines and outlived them.

Hard as it is you can really only plan for the worst and hope for the best