This is the first time I have ever heard a clinician say HSP cannot start with Bulbar Onset. There is no doubt my PLS started with Bulbar issues; speech, pseudobulbar affect and swallowing.
As a plwPLS (I think I'm using that acronym correctly), I appreciate all of the work being done. I'm about half-way through the recording as it's a lot to take in. I have a question for Dr. Bede - when he says he didn't observe a plateau in PLS-related degeneration in the brain images, what time scale is he using? Many of us in the PLS community, including myself, have experienced an apparent slowdown in symptom progression at about the 7 year mark. Did he look that far out?
This is the first time I have ever heard a clinician say HSP cannot start with Bulbar Onset. There is no doubt my PLS started with Bulbar issues; speech, pseudobulbar affect and swallowing.
As a plwPLS (I think I'm using that acronym correctly), I appreciate all of the work being done. I'm about half-way through the recording as it's a lot to take in. I have a question for Dr. Bede - when he says he didn't observe a plateau in PLS-related degeneration in the brain images, what time scale is he using? Many of us in the PLS community, including myself, have experienced an apparent slowdown in symptom progression at about the 7 year mark. Did he look that far out?