corticobasal syndrome (CBS)

[0neyellowbird]

Just diagnosed with atypical Parkinson’s disease. Not sure what to expect. Dr said it’s corticobasal syndrome. Am I in the right place?

Vic

[Kelmisty]

This is for Corticobasal Degeneration Syndrome (CDB) and Progressive Supranuclear Palsy.

[0neyellowbird in reply to Kelmisty]

Thanks! Not sure what to do besides live with it.

[Kelmisty in reply to 0neyellowbird]

It’s not me who suffers, it’s my Mum. All you can do is live with it and make any big decisions now, making sure your family know.

Hopefully a sufferer might be along soon, but from what I’ve seen most people are carers for people suffering.

[Araucana]

yes in the right place for CBD and PSP. I’m a carer for my mum with CBD though, not the sufferer.

[Goodact]

Start a vigorous exercise program immediately go and get article from frontiers in neurology Best Practices in the Clinical Management of Progressive Supranuclear Palsy think about joining a boxing gym

[lunarquasar]

Hi my wife has had Cortico Basel Syndrome since 2016 I have been caring for my wife since then it is sometimes called Cortico Basel degeneration hence known as CBD. My advice would be to take each day as it comes and live life to the full now. Here in the UK I have carers now 4 times a day and help from the local hospice for respite. We had lots of holidays in the early stages and I am glad we did. Wishing you all the best.

Barrie

[AliBee1]

Hi. So sorry to hear of your diagnosis. Are you in the UK? The PSPA Association has some very good leaflets on CBD which we found very useful to give out to professionals who did not know much about it. It is very similar to PSP so you might find Tim Brown's PSP Chronicles [available on Amazon] and his posts very helpful. This is certainly the right site for you to be on especially as it is international so you will get support from across the world. Good luck. AliBee xx

[0neyellowbird in reply to AliBee1]

I’m in the U.S.

[AliBee1 in reply to 0neyellowbird]

OK. Good luck. xx