Next stage corticobasal degeneration

[Upturned]

Hi all first post in a while. I recently saw my neurologist. He was great as usual. Only this time he informed me that I am now at the next stage. But he did not elaborate on that.

My condition has got worse but my wife and family are brilliant.

Does anyone have an idea of what he meant.

I'm 60 and think I'm in my 5th year of this. Any advice much appreciated.

[Stephanielayell82]

It could mean a lot of different things. When we were seeking neurologist help here in the US and change they would refer to next stage of the disease. And now that my loved one is declining big time over the last year instead of stage they use decline.i believe because it's so rare here to be diagnosed with PSP they aren't too sure how the disease progresses. Last January my loved one had rapid weight loss from January to March. Then March to June memory issues, swallowing, speech, and very weak. Hospice told us she wouldn't make it to Thanksgiving here we are in a new year. She has been at the same place as she has been since early December. So just take it a day at a time. Best wishes to you on this journey.

[Perrywrinkle]

Good Morning, Upturned! My husband also suffers from CBD, diagnosed in 2018. Our neurologist has never referred to "stages", maybe because the condition progresses at different rates. My advice is to ask him what he meant by that. We are both 75 and I've learned not to be shy about questioning the doctors. When he was diagnosed his symptoms were mainly walking with a shuffle and holding his left arm up, bent at the elbow. His arm is now completely useless and basically has a mind of it's own. He can no longer walk without assistance and needs my help with ALL aspects of daily living. It seems a new challenge presents itself every day. But we take it one day at a time, focus on little things that bring us joy, laugh at the crazy antics of our little dog, and are thankful that he still has quality of life. I hope this is true for you as well. I'm new at this site. Maybe both my husband and you would find support by communicating with one another?

[azdadof4]

My neurologist has never referred to stages either. I suspect that is due to the fact that each person’s journey is so unique. My diagnosis was done in 2019 after about 3 years of me ignoring the early signs. I’m 65 now and still working as a mechanic. I have to use a walker or be holding on to something to be able to do anything. I fall a lot and have lost the ability to get up on my own. Physical therapy twice a week and home stationery bike in between. I thank God every day for the abilities I still have. No cognitive decline, no speech or swallowing issues, just physical issues with my legs and left arm at this point. My family has also been very supporting and I guess my greatest fear is that I could become a burden to them.

Keep up the fight. Never give up.

GB