Corticobasal Syndrome

[Hionarock1]

Where did you get diagnosed?

[honjen43]

Hi Hionarock1. See you have put 2 posts in already today! Welcome to this site!

We come from all over the world, so it would help to know where you live. Others nearby will have more relevant info than mine!

My husband was diagnosed with CBS 3 months before he died. The diagnosis was a much better explanation of his symptoms than Parkinson's which I had suspected for a few years.

He saw a neurologist, Dr Phillips, at Waikato Hospital, Hamilton, New Zealand, after our insistence for a neurology consult. My husband had earlier had an MRI and this showed up a meningioma which they said they would follow up in 6 months to see if it was growing.

When my husband was admitted to hospital for emergency care after his back muscles suddenly stopped working a few months later, we again asked to liaise with neurology. The ward specialist insisted that was unnecessary as it was Parkinson's disease. Dr Phillips came anyway with a group of students and gave me a page from his notebook of his diagnosis.

My husband showed signs of dementia but it was not Alzheimer's.

He showed signs of Parkinson's traits but it was not Parkinson's disease.

He diagnosed Corticobasal degeneration with possible frontal lobe deterioration. He showed me the MRI picture and explained what the dark and light areas meant that showed the changes in the brain. He was impressed at the dramatic flop backwards that my husband made after being sat up on the bed. It was obvious these muscles were not working.

This doctor came to us a couple of times after I had run-ins with the ward doctor and was helpful and supportive to both my husband and me, but without reducing or diminishing the persona of the ward doctor who was in charge and had a different opinion. Maybe the paperwork for Parkinson's was more straightforward!

Dr Phillips was, I believe, more interested in the rare brain diseases that seem to get misdiagnosed as Parkinson's, and I hope he continues to follow that path.

The ward doctor warned me that aspiration pneumonia would likely end my husband's life before CBS finished its course. When I asked he said he could live another 9-12 months. He died a week later.

I believe that if my husband had been diagnosed as end stage and had less than 6 months to live, that I might have been able to get him into Hospice, where I am certain his last days would have been more understood than at the Resthome he was in.

However, once it was obvious his swallow reflex was gone and he had aspiration pneumonia again, the staff were caring and adequate to the end. It was a very traumatic time and so fraught with frustration, anger, and concern on my part, and are still remembered as so!

Two years on and I am still here passing on what I learned along the way. We had far less time to travel that road than others have had, and it just goes to show that no two cases are the same. Each is very individual and it cannot be taken for granted that progress along that CBD road will be able to be anticipated!

Just watch the progression in your loved one. Write changes down. Get an exercise regime going with a movement specialist and if you have a bucket list - try and do it now!

Big hug

Jen xxx

[Confusedandlost]

Sorry this is a late response. I was originally diagnosed with Parkinsons and 9 months la\ter that was changed to CBD at the National Neurology Hospital in London where I spent 5 days having various tests done. Good luck.