Does anyone have CBS (corticobasal syndrome)?

@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!

Have no experience with your disease, but I do with another similar one. It’s true if you are unfortunate to come down with a rare disease you start to feel awfully lonely pretty quickly. Sending hope, hugs and most of all prayers. I don’t have any experience with your disease, but I do another (MSA). No treatment only palliative care. So sad for anyone walking this road. ❤️

Thank you!

I can’t talk so I am more lonely.

Keeping you in my thoughts.

Connect on here with thoughts and discussion items, hopefully that will make you feel like a part of a community and perhaps give you some ideas that’s might be helpful. I’ve noted so many people are both kind and knowledgeable on these forms. I hope you will accept my prayers for you.

I will! Thank you 🌷