I can’t say I know anything. I was just reading up on articles I could find. The main article I read correlated the oculo/palatal tremors with a bleed and that a wider ataxia was more often associated with things other than a bleed but it sounds like the damage she has suffered is a bit more extensive than just the oculopalatal effects.
I read the same article rather quickly the other day when replying to you (and thought I read that the wider ataxia abates but on re-reading today, I think I mis-read that and the other commoner conditions that lead to the ataxia are not what your wife has (by my reading) so I’m not convinced there is anything to help you with there, unfortunately.
I might re-read it again, though).
I’m no doctor – I’m an IT man – but by virtue of being an IT man (and software being a very structured language in the same way that legal text is or medical terms are) I feel I can read some medical and legal texts more easily than some, so I’m often enthused enough to try.
The two drugs cited in the article I read were gabapentin and memantine. Baclofen was also mentioned but cited as not effective. Botox is definitely interesting!
So I know nothing but don’t mind trying to read some articles if there is any prospect of helping, especially for something so rare that you struggle to find people with common experience.
Very best wishes,