CBS?

@aoibhin
When were you diagnosed and how are you being treated? Do you have family support? How are you managing/coping?
https://www.brain.northwestern.edu/dementia/ppaos/index.html

After 4 long years of told, by my neurologist, nothing with my brain, I got to UNM. They ruled out ALS first and diagnosed me having PPAOS. But that didn’t explain everything. So my neurologist at UNM sent me to movement neurologist. She said I have CBS and my primary is PPAOS. UNM takes me seriously, I had their diagnosis in 4 months.

I respect them. They getting a machine to help me talk. I having speech therapy with a specialist. I am going to OT next month.

But like neurologists, they slow in the research. Medical schools and doctors are dominated by the pharmaceutical industry. Learning is lead by drug companies. I have that discouraging. After a doctor’s appointment I have no hope.

I am researching Hyperbaric Oxygen. My neurologist says it not proven. But many disagree.

Do you have it!