Dad has possible diagnosis of corticobasal syndrome.what is this?

[144jim]

I have joined this forum because I have just found out my elderly father has a possible diagnosis of corticobasal syndrome.I don't know if the diagnosis will ever be confirmed.I've never heard of this.

[rriddle]

Sorry to hear about the diagnosis. It can only be confirmed through brain autopsy (post-mortem). And the chances are not high that the diagnosis is correct as most of the time a CBS diagnosis is not correct.

"CBS" is the term given when the diagnosis is a clinical one. "CBD" is the term given when the diagnosis is a pathologic one but most physicians use the term "CBD" even for a clinical diagnosis.

For general info on CBS/CBD, see:

brainsupportnetwork.org/cbd

Robin

[144jim in reply to rriddle]

Thank you very much for replying.I've read the article it was good to read.the neurologist said dad has got lower body parkinsonism and cognitive decline aswell.we are waiting for referral to memory clinic.he's not taking any meds.

[Boyce3600]

What is his age

[144jim in reply to Boyce3600]

He is 82 years old

[raincitygirl]

Hi 144jim;

So sorry to hear of your dad's dx; Was it a neurologist who diagnosed him?

CBS/CBD seems to be more rare than PSP, and it is often mixed up with PSP. Some of us on this site (eg my husband) received a PSP "maybe diagnosis" before narrowing down to CBD. My husband's symptoms included stiff, clumsy and unbalanced movement, loss of speech, cognitive impairment, apathy and eventually, what seems to be the unique signpost of CBD: the "alien limb". Symptoms for 5 years so far.

Do you want to share your dad's symptoms?

If it IS CBS/CBD, unfortunately there is no cure. We (the community) hope to slow down progression with cognitive stimulation, physical exercise, speech&language therapy when appropriate. Mostly we share information, right down to the nitty gritty detail to help make our loved ones' lives as comfortable as possible through to the end.

There is a rich resource of threads/posts on this site: some of the past threads will appear on the right beside the current thread you're reading. You can also use the search window on the upper left, or google the topic you want and add Health Unlocked into the search topic.

Take care and best wishes,

Anne G.

[144jim in reply to raincitygirl]

Thanks Anne.my dads main symptom is his freezing shuffling gait.his short term memory seems to be impaired at times and he gets tired and confused.the neurologist said scan showed brain shrinkage and maybe emerging dementia.perhaps Alzheimer's but can only be confirmed with autopsy.subsequently the letter said possible diagnosis for corticobasal?

[raincitygirl in reply to 144jim]

That sounds pretty much like what the Neuros said re my hubby before the alien limb showed up. They would not rule out Alz even though his memory was very good. They said "It's an unusual route for Alz to take, but you can't rule it out." Even the speech loss wasn't a clear indicator for them. As Robin said above, the CBS dx when it came was a "clinical" one as they can never be certain until autopsy.

No doubt you will now be reading all you can on CBS/CBD! You'll read that it's a "tauopathy"(as is Alz, I believe) and it seems to depend upon just where those "tau proteins" are doing their over-production/over-folding thing in the brain, damaging good tissue. (And no-one knows why they go crazy..) So some never have the speech loss my husband does, or some never have the dementia. Some decline quickly within 3-4 years of dx and some last 10 years.

So your father is 82: depending on where you live, he may have already reached and exceeded the average life expectancy for a male in your country. He may die from CBD (usually aspiration pneumonia, or complications of a fall or an infection) - or he may die from other "typical" causes of death (cardiac, stroke, etc.). Why do I mention this? Because, as crappy as any neuro disease is, it is possible your dad can continue life, even if physically and cognitively impaired, in a reasonable "old life" fashion until whatever takes him, takes him. It actually may be more critical to look at the life of the primary caregiver (does he have his wife still?) who will have a plethora of issues as s/he takes care of your dad, and again - depending on age, may need the most support from you.

I hope my comments don't come across as cold - I am in the caregiver position and there's a time for information and a time for a hug...I hope I called it right

XXX

Anne G.

[144jim in reply to raincitygirl]

Hi thanks for taking time to reply again.I guess I've been trying to get a confirmed diagosis so I feel more in control of what is to come and to make sense of it or so I can Google to find a cure.mum lives with dad but she has mixed dementia early stage still i think so I have carers for them and they each go to day centre on different days.

[144jim in reply to raincitygirl]

The neurologist like you said it is not important to label it.I thought it was to get the right help x

[raincitygirl in reply to 144jim]

Yeah - Neuros say that! But we family members want to know! How long does he have? What comes next? What must we prepare for? I do think it is important to know. Its frustrating when you're not sure what disease it is. What do you research? Etc.

Did you see Robin's post above re link to Brain Support Network: post on 5 types of PSP? Theres one with "freezing gait" in the title. I'm not a clinical person, so I appreciate these links to clinical references. Your Dad's dx may become more clear as symptoms develop.

Its disheartening, I know, especially with 2 parents affected. Keep checking in here whenever you want. Its a very supportive group

Anne G.

[Dadshelper]

If the the doctor thinks there is a cognitive decline I'd suggest getting a Power of Attorney and some kind of power of healthcare in place.

Ron

[144jim in reply to Dadshelper]

Hi yes I got POA a while ago but he ticked the box that meant it only can be used when he looses capacity.this gave me problems when he was in hospital and I couldn't pay his bills.I've been told we can't just amend one page.would need to pay for a new one.

[JR61 in reply to 144jim]

Hi, if your dad has a POA and has come to the point of not having capacity a doctor should be able to help you to activate the POA you already have. If your dad hasn’t lost capacity I seriously recommend that you apply for a new one urgently as you may come to have difficulty communicating with him to such an extent that it becomes impossible. Otherwise all decisions must pass through the court of protection which will make everything much more complicated. Ruth x

[arwenmark]

Sorry to say there is no cure, it is a degenerative disease. Read the posts on PSP here they are similiar in many ways.