CBD Revision

[Kahia]

Hi again

Sorry to all -- I had posted that my husband was diagnosed in 1995. I meant to say 2015. That's what happens with little sleep. Sorry

[honjen43]

Hi Kahia, welcome to this forum. Sorry to hear your husband has had a bad fall. It is difficult to manage our husbands without additional help.

My husband was diagnosed with CBD shortly before he died in 2016. After a couple of years of watching him slowly decline for no apparent reason, he was diagnosed with Parkinsons disease. Medication had little effect, and when he collapsed with very little strength in his back, I had to resort to hospital care. While there, I requested a neurolgilist consult and he gave the CBD diagnosis - which was the only one that made sense of his decline!

He must have started symptoms around 2012 when I look back, but it is difficult to work out exactly, as he had numerous health problems along the way. You can read his journey if you long press on my name and emoji. It was short, but don't be alarmed by that. I joined the group in desperation at that time, seeking answers and help and understanding. I found all of that! I hope my experiences will help you along your journey.

Hugs

Jen xxx

[kenh1]

Thanks for confirming the date there was another one on the American CBD website saying diagnosis in 1995. Which really confused me yesterday. Now it is all becoming clear. We all need our sleep.

[Hidden]

Under the More drop down below the post is an edit option which I use a lot. I only see my typos after I post things. I did wonder how he had lived with the disease so long. We all understand being that tired.

[DenB]

Hi Kahia,

I was thinking that 20 odd years was along time to have CBD!

My husband was diagnosed 2013 but symptoms started 2010ish.

There has been a gradual decline until we are at this point in time, where I am sure he is in the late stages but who knows. I was told that he probably had weeks , as apposed to months left, in March and then all of April he has seemed more alert and trying to be more communicable than he has for a long time!

He is totally reliant on me for everything. He has been wheelchair bound for quite a few years now but not bed bound. I do put him down for a rest or sleep at least once in the day and he has always slept through the night, thank goodness,waking only if he needed to be changed.

I live each day as it comes, try to keep my husband comfortable and have made sure that I have everything I need to care for him, from hoists, the hospital bed, continence supplies, medication, access to medical persons that may be needed at any one time.

My husband goes to the local Hospice once a week and that gives me a welcome break!

I notice that I don't socialise as much as I or we used to. At this time, I have a -can't be bothered -attitude, which I know isn't good but hey ho!

I am taking us both to Devon in a few weeks for a holiday.

I found a bungalow, down there that has everything. I need to care for my husband and after a lovely relaxing week, last year, I optimistically booked for this year and I am glad I did......I may even book for next year!

My husband is 63 this year and was only 52 or 53 when he first had signs.

That is so young and I know we have missed so much over the years, I am just so glad we had a great life before CBD and so have masses of wonderful memories of travel, friends and family.

Life can be hard but we just have to go with what is thrown at us, if we can. It's still a life worth living.

Good luck with your struggles and keep in touch.

Denise x

[Hidden in reply to DenB]

Making the best of it is about all we can do.

[Dadshelper]

Welcome to the site. Dad was Dx with CBD in Jan 2016, passed in Sept 2019. He had symptoms probably 4-5 years prior to Dx. Ask any questions you may have, rant if you need to, we've all been there in one way or another.

Ron