Husband newly diagnosed with CBS...now what..

Posted by debrand @debrand, Jul 10 10:51am

We are newly diagnosed with cbs and are learning all the details of this terrible disease. Randy is 64, been in excellent health all his life. 3 years ago he started 'losing' his words, and thoughts. Fast forward to Feb 2025 hes had MRIs, 4 hours of psychoneurological testing, PET scan and blood work. Confirmed CBS by his neurologist. So here we are, hes been taken out of work, driving is questionable and limited. His speech seems to change daily, hes depressed and scared, as am I. I feel like I should find us a counselor and start going...any advise or ideas would be great!

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ktcosmos | @ktcosmos | Jul 10 11:33am

While my person has a different issue I experienced a sense of penetrating overwhelm for quite awhile initially.
Finding programs and support groups have led me to a mountain of resources, and that has helped chip away at my panic mode and disbelief.
I am thinking of you and hope you can unearth some similar resources for coping with this difficult diagnosis.

slarson14 | @slarson14 | Jul 10 6:20pm

What area of the country are you looking for help in?

shelleystolfi | @shelleystolfi | Jul 10 8:20pm

My husband has MSA. He is 52. My thoughts are with you.

debrand | @debrand | Jul 11 4:21pm

In reply to @slarson14 "What area of the country are you looking for help in?" + (show)

We live in Sodus Point New York. Up by lake ontario. I do have a great neurologist and team but Im wondering about therapist care... speech? OT? should i be asking this from health insurance?

kdalda75 | @kndaustin71 | Jul 11 4:21pm

What is CBS and MSA????

debrand | @debrand | Jul 11 4:24pm

CBS is Corticobasal syndrome - under the Frontotemporal Degeneration. Its a rare type of dementia that causes both thinkig and movement difficulties. estimated to affect just 5 in every 100,000 people.

kdalda75 | @kndaustin71 | Jul 12 12:54pm

In reply to @debrand "CBS is Corticobasal syndrome - under the Frontotemporal Degeneration. Its a rare type of dementia that..." + (show)

Thank you! Have you considered a second opinion or perhaps seeking more advanced medical expertise at some of the larger medical centers? Just a thought.

geneloff | @geneloff | 3 days ago

Hi, I’m curious to know how Randy is doing. I too have CBS. I’ve had for nearly 3 yrs and it’s moving slowly. It’s a complicated disease which I am sure no one truly understands. Love to hear from you.