Cbd

[Codd_family]

Has anyone been in the advanced stages of this disease and not had the speech or swallowing difficulties ??....I am just praying my mum won’t get these...thank you in advance xx

[raincitygirl]

Hello C family:

My husband had CBD for 5-6 years until he died last month. He never had swallowing problems and ate 3 meals/day right up to the day he died

He did, however, have speech problems from the beginning, which developed into keyboard, texting and eventually reading problems as he lost cognitive strength. He could, however, communicate a bit verbally until the day he died.

Hope this is helpful.

Anne G.

[Codd_family in reply to raincitygirl]

Hi, thanks for reply...quite a confusing illness and we understand everybody is different with it but everything I’ve read always say speech problems, sorry for your recent loss, 💔 xxx

[Dadshelper]

I would say dad is in advanced/late stage and definitely has speech issues but still tries to eat at least a little at meal times. He just doesn't have much of an appetite.

Ron

[Codd_family in reply to Dadshelper]

Thank you, bless him..just an awful disease xx

[kenh1 in reply to Codd_family]

Sorry to say my wife had swallowing problems and is on Ngtube feed, she also lost her speech quite early on. One positive is that she doesn't appear to have any pain or anxiety. I've never had to give her anything stronger than paracetamol and that was only just in case. I've just been administering her medication and she had a lovely smile on her face. Pleasant dreams, memories, or just appreciating being loved and cared for? I don't know but her smile made my day.

[Codd_family in reply to kenh1]

Hi, thanks..it’s very strange how it differs from one to the next, mum has awful anxiety and very depressed as her legs have gone and only has use of one arm now 😪, she’s not the same person anymore 💔 xxx

[Spiralsparkle]

Mum is late stages and has trouble with word finding and forgetting what she wants to say when trying to put a simple sentence together. She needs alot of time to be able to speak and other times when all is firing at the same time she is able to reply instantly. We don't have full conversations anymore but she is able to get across at times what she means. She does though get words mixed up and says the opposite to what she means.

Her swallow is slow and she is on puree food now as it is easier for her but still able to eat but appetite is very small.

[Codd_family in reply to Spiralsparkle]

Thank you, awful time for everyone xxxx

[Donnasue1]

My husband passed away in June, still able to talk, and never had a swallowing problem. We thought it was due to being in a clinical trial as the disease did not seem to progress in the devastating way as for most victims of the disease.

[Ettavb]

My mother first presented with speech difficulties about five or six years ago (and about eight years into the first noted symptoms). In fact it was the difficulty in speech that finally led us to the diagnosis of CBD. She still talks but admittedly struggles to find the right words and in doing so - often says “it’s complicated”. She does choke a lot when eating but still eats well and has not lost any weight in the past several years, in fact probably gained some weight due to the lack of mobility (she was previously very active). Lately she keeps saying she can’t eat if she’s not set up perfectly in her chair and claims she can’t eat in bed anymore due to tipping over (though she’s always manages the chocolate and treats I bring her when she’s in bed). Visually, she doesn’t seem to be very off-centered, so I think this might be a manifestation of the balance issues related to CBD. She does tilt slightly to one side (the side that first showed paralysis). So I think this means that her difficulty in swallowing is most likely progressing.

Reply

[Ettavb in reply to Ettavb]

I should also add that she talks very slowly and with much delay - which leads many people to believe she is mentally impaired - so they talk real slow and loudly back to her — which makes her cry sometimes as she is quite intelligent with 3 degrees, a Phi Betta Kappa, and a past instructor at a university - and doesn’t need this type of accommodations. I intervene when I’m able and try to remind her that people are just trying to connect with her even if they’ve misjudged her intellect.

[Greens]

Hi all Mum is 3 - 4 years in declined massively since Christmas and last two months seems to have days where swallowing is difficult apart from when eating cake and chocolate. She too leans to her alien limb side and she is finding it harder to make us understand what she is saying she forgets part way through to it is so frustrating for her and therefore she gets agitated . It’s an awful disease and it’s even worse watching your loved one suffer all we can do is love them and keep them comfortable and safe x

[Kevin_1 in reply to Greens]

Hi Greens

It's heartbreaking isn't it.

I think you are so right in what you say.

We found that time put into communication was really time well spent. No matter how hard that is. Liz tells me it keeps her in the world, involved and valued. Though most of the time we have to use hand squeezes in answer to questions. Even that is starting to fail now.

The other thing is hugs and kisses.

Wishing you and your Mum the best of what can be.

Warmly

Kevin

[Greens in reply to Kevin_1]

Bless you both it’s a sad journey we all are on and yes lots of hugs kisses and reassurance we are there for them keep smiling