Corticobasal Degeneration

[Kahia]

I would like to communicate with others who have been diagnosed with Corticobasal Degeneration. My husband was diagnosed in 1995 but had signs of this for a few years before.

[raincitygirl]

Hello Kahia and welcome to the community.

My husband had CBD before he died. Your husband's longevity with cbd is phenomenal! Over 20 years!? If you have read about cbd on the PSPAssociation of the UK's website, you'll have read that an average lifespan with the disease is about 5-7 years. You and your husband must be quite unique!

There are some members who check in here who are living with CBD. More members, though, are spouses or other family members of "CBD-Live-ers". If you check out member Honjen's posts, you'll find lots of valuable information about life with CBD.

While you're waiting for others to respond, go up to the search window on the upper right of the page: you can search for subjects, symptoms, members etc. (It's frustrating that typing in 'CBD' will also bring up all the posts about cannabis oil, but c'est la vie 😉)

Tell us more, or give us some questions to tackle. I see from your profile that hubby is now in hospice. That must be scary now.

Hugs

Anne G.

[Kahia in reply to raincitygirl]

Hi raincitygirl. I meant to say he was diagnosed in 2015. Don't know what I was thinking.

Not been sleeping at night. Sorry for my error. Thank you for your response and I will be looking into what you have suggested. Am waiting for my dinner to be delivered. I hate cooking for myself. Will update later in week with other things we have gone through with this.

[Kaka1234]

My husband has CBD he was diagnosed in 2016 he's 58 I'd love a chat xx

[beau1988]

My husband was diagnosed in 2013. He was 56 when we first started the process in 2011. Feel free to ask anything here it's an open book & everyone is very helpful & insightful. Take care. Kerry

[Beads0122]

Kahia,

I think you have come to the right place for information and support while caring for a loved one with CBD. I’m sorry that you need this forum, but believe that you will be blessed by the wisdom and care you will receive from the people here. I definitely have. The support is more than just for the CBD patient. It is also for the caregivers who are often overlooked.

My wife was diagnosed with CBD in 2017 when she was 58 after being misdiagnosed for a number of years with early onset Alzheimer’s. Initial symptoms were probably 6-7 years before that diagnosis. She passed away in the summer of 2018. I will be glad to answer any questions that you have.

I wish you strength and wisdom as you navigate this difficult time in your lives.

Bobby

[cameoboy11]

Hi i actually have been diagnosed with corticobasal degeneration . My telephone number is 01326240080 if you would like to speak to me. Or you can message me on this forum . Regards jo

[Cinnylou]

Hi Kahia! My hubby was diagnosed with CBD in 2017 at the age of 60, although things had started going odd with him back in 2014. I’m presently trying to keep it together caring for him and still working a full time job. Thankfully, his mom lives next door and helps watch him while I work. And our son still lives at home and helps out as well.

Hubby has been getting worse as of late and well meaning people ask me, “Oh my. What are you going to do?” I’m sarcastically thinking in my head—what are my choices?!? But I will politely tell them that I’m just taking one day at a time...because that’s really all we can do.

Holler at me if you want to talk. I’m not going anywhere for awhile.

Cindy

[Mamapiggle]

I too have CBD I was diagnosed October 2017 this August I will have had it for 5 years .I consider myself to be lucky in many ways because I'm still walking I have only had one for fall ,although my sister would disagree with that I eat soft diet and it takes me a long time to get ready on a morning. on my first visits to the hospice drop-in center a man said to me can I asked you what's wrong with you because you look normal, but my speech is not normal, it takes me a long time to eat my food which I find very tiring, so sometimes I give up . Jeanette x

[raincitygirl in reply to Mamapiggle]

...and you still communicate really well, Jeannette - even if it takes time. That's a great thing!

XX Anne G.