Thanks to all who have replied about my sad news of my husband being diagnosed with CBD, I am still learning my way around the forum so please bear with me. I am attempting to take one day at a time, but reading all your posts is quite terrifying.He still is mobile so we are trying to do everything we the progression of this foul disease seems to be unknown?Oh Lord the future is daunting...thank you all for you r kind replies and humour which is so so necessary.

8 Replies

  • It's good to think of the future and get things in place before you need them but try not to think of it as too daunting or everything will become  overwhelming.  I thought of things as a project, discussing what had to be done with my husband although his input wasn't always appropriate.  It's good you are doing as much as you can now, before things become difficult and as long as you are fit, you will still be able to do things when his illness progresses.  My darling has to be hoisted to transfer him to chair to bed etc, wears a convene, is mainly PEG fed, has a suction machine for excess saliva, I could go on, but on Friday it was my birthday and I took him in our wheelchair adapted vehicle to the British Wildlife Park at Linfield where we met our sons and their families  and had a wonderful day together. Being a beautiful day, we ate outside and our grandsons presented me with a birthday cake complete with candles as they all sang happy birthday to me.  I PEG fed C as we watched owls free flying from post to post, one being directly in front of C. When I put him to bed that night, I asked him if he enjoyed the day and his thumb moved, indicating yes. It doesn't go up any more but he tucks it in his hand for no. Good days can still happen.  It's exhausting but I think, well worth the effort. Our 6 year old grandson gave me a hug and said it was the best place he had ever visited.....ok he says that whenever he goes somewhere new but it made me smile.

    Please try not to  worry about the future. Unfortunately worrying won't change a thing.

    I hope tomorrow is as good as it can be for you and your husband.


  • Oh Bev the narrative of your birthday made me cry and smile and be renewed....I am so happy for you and C and your kids...What a lovely day for you albeit exhausting

    Remember this day when you need revitalization.


  • I need revitalising today AVB.  The carer showered C this morning and after he was dressed we hoisted him into his chair.  I was preparing his morning yoghurt and medication when he started to moan.  I could smell the reason.  He had "exploded" And he hadn't been for a couple of days.  Folk had told me PEG feeding can cause loose motions but that had only happened once before and I thought that was my fault as I'd given him prune juice.  I didn't know where to start.  I used 5 pairs of rubber gloves cleaning him up and then had to hoist him onto the commode to give him his second shower of the day. Fortunately I have 2 slings as the first one had to be washed as well as the clean clothes we had put on him just before it happened.  He was sitting on his new chair but I had covered the seat and arms so no damage done.  

    However awful it was for both of us, we did chuckle as the radio was on and a woman said, " I do love the smell, it is such a lovely perfume". I think it was a gardening programme and she mentioned the lovely perfume several times.  She wasn't standing where I was.

    The third lot of washing is in the machine and I have finally sat down for a few minutes to look back at the photo's taken on my birthday.


  • OK  I am laughing at the lady on the radio.....But don't you see where this could be a disease brought on by passive aggressive tendencies? If you hadn't washed him all day, would he have done the dirty ? I don't, yes I know it's not passive aggressive...but the things that my husband does seems like an uncanny response to that which I just gave him, did for him etc.

    Keep laughing NannaB and enjoy your pics! and make sure you have enough gloves!


    PS. B has had opposite effect with the PEG nutrient.

  • Follow his B12 levels. Should be 500+ regardless what posted range is considered normal. Take sublingual methyl one daily. 

  • Hi squeak63 I just saw your posts tonight,I'm so sorry to hear your husbands plight,my mum has cbd but she is in the final stages,which is why I found this forum, my advice for you is to enjoy your husband and do all you can with him because this disease does move quickly, like I said my mum is near the end of this horrible disease and I was trying to find out what happens next,I have found this site so helpful as I'm sure you have too

    God bless you both and stay strong 


  • Hi Squeak63, I've just joined and found your post. My husband was diagnosed last year with CBD after going to the Cleveland Clinic and then Univ of Fl, Gainesville. The symptoms seem to come and go with my husband. I don't know if it's because it's so early on but now he's falling a lot but not from balance. His right leg just gives away.  Has your husband experienced anything like this?

  • Hi, yes, my husband's right leg just gives way and he stumbles, so far, thank God, no falls. He is still able to walk and does this a lot to keep the muscles as good as possible. The other feature is his right arm/hand which doesn't always do what he tells it and has a vice like grip that he is completely unaware of. The other main feature is speech and "problem"solving and the like. We believe we're 2 and a half years into this. He has good days and bad, stress and tiredness effect him but sometimes his symptoms are bad for no reason we can see. It has been a slow decline so far...does this rings any bells with you?

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