CBD

[ToniW]

I’m caring for my mom who has just been diagnosed with CBD. I’m hoping to hear about and learn from other’s experiences.

[Hidden]

Hi and welcome to the site, even though I wish you didn't need to find it. Dad has CBD, diagnosed few years ago. There's very good info and people on the site. You can use the search feature to look up past posts on just about any topic or just ask and someone will usually respond rather quickly since it's a global forum.

My first piece of advice would be to get a Power of Attorney and Power of Healthcare in place for your mom. There may come situations where your mom won't be able to convey her wishes or give consent.

Ron

[doglington]

Welcome. I agree with Ron. You need to be prepared. Then get on and make the best of now - where-ever you are in the progress.

You will be glad if you can video your mom talking and laughing. Remember that, although this is a dreadful disease, your mom will not get all of the problems you read on the this site. Whatever problem you have there will be someone who has managed it.

love from Jean x

[Bargiepat]

Hi,

I have been here for about 18 months after being diagnosed with CBD.

The advise that I would rate highly is 'exercise' for the body and mind, it is so easy to give up.

XXX

Patrick.

[ToniW]

Thank you so much for taking the time to share your experiences and good advice.

[raincitygirl]

Dear Toni, Hello and Welcome!

My husband has CBD and I would not have survived with as much sanity as I've managed, if it hadn't been for this site We are about 5 years into it, and one things I've learned - you can't tell how the disease is going to progress for your loved one compared to someone else. There are people who have been diagnosed as long as my husband has, who are virtually bed-bound, and others like Patrick who replied further up, who are travelling about Europe on their own, living on their own and coping incredibly well!

Just keep in touch with us and let us know how things are going for your mom. If you feel like it, let us know where you live and how long your mom has had symptoms and so on. It does help to talk.

Hang in there and we'll be here for you

Anne G.

[Spiralsparkle]

Hi

My Mum has CBD, diagnosed in 2016 but has had symptoms of something not being quite right since about 2011/12. The last few years being more significant in loss of function for daily living. We are in the UK.

If you have any questions , this forum is the place to get the support. It is an amazing resource.

X

[LostinHeadSpace]

Hi Toni, I don't have advice for you, but my husband is at the same stage, just in the process of being diagnosed with possible CBD. There are others reeling with it all. . . and lots of people here who have experience.

Lost

[Val4521]

So sorry to hear that. I was diagnosed in February last year but I had symptoms since 2015 which were misdiagnosed as Parkinson’s. The only advice I can give you is to find a neurologist who really knows about CBD. In my experience some of them know very little about the disease and are too proud to say so. My other bit of advice would be that everyone does it differently. Not everyone gets all the listed symptoms. In my case it it is entirely physical at the moment. I have had numerous cognition tests which have all shown my cognitive ability to be normal for my age (69)..

I hope this helps as you journey along this very hard path alongside your mother.

I wish you both well.