Hi everyone.. my mum was finally diagnosed with CBD approx 2 years ago when she was 64. Symptoms started with a shaking right hand now it is useless. She struggles with pain every day and is very down. Does anyone have any useful advice for me? I worry about her daily x
We are in Shropshire
Every case is different, it’s good to see a doctor for advice....My Client did so well with Patches for pain.
She’s on huge amounts of medicines.. and we see doctors regularly
I cooked almost all her foods using turmeric and smoothies too... it helps in inflammation.
Aww good to know, thank you xx
Hello Mum and welcome to the community!
My Main advice is to do everything possible to help keep her mood up. My husband had CBD and I quickly learned there was no cure and precious little any doctors could do. I got him on an SSRI once I saw him becoming depressed and it did help. I also figured out what would bring him pleasure and tried to get it in to his every day.
By the time we knew the dx we were too late for bucket list activities, but if you want to be inspired by small and constant uplifts for patients, look at the posts by Bazooka and Richard's posts titled "What to do with CBD" he's up to about Part 7 on that series!
Hugs and strength to you 😊
Anne G.
Loved loved your reply!
Thank you so much for this.
Hi I cant find those posts 
Sorry: Richard33's posts are titled: Things to do with CBD. Sometimes it's easier to find out old posts by typing the title into Google than using rhis site's search (the search function here isn't to good) .
Good Luck! - oh and if you scroll down far enough on your home page you'll find a post by Bazooka: once you find one of her posts, click on her name or icon and it will take you to all her posts. Same with Richard33's. In fact Richatd has replied further down here - click on his name and there you are.
😃. Anne
Welcome to the site. Dad had CBD also. Dx in Jan 2016, symptoms 3-4 years prior, passed in Sept 2018. Dad never had shaking but his right arm became rigid to the point if non-useable. Does her pain seem localized in an area or wide spread? Make sure you talk to her about any wishes for future medical treatments, including end of life.
Ron
The pain is mainly the hand, the whole arm tho feels so heavy so I’d a big burden to carry around.
Thank you so much for the reply x
Hi,
The pain in her hand could be dystonia. Botox injections would get rid of this. For her mood I would try to get her on an anti-depressant. Ruth is on Sertraline 50mg which seems to help greatly.
Richard
She has had one low dose of Botox. Due to have another lot in about 4 months. So hopefully will help. Thank you x
MumwithCBD
My heart goes out to you. My wife has CBD her symptoms are so similar to your mum’s. My wife was diagnosed about same age. Raincitygirl comments are perfect. If your mum can do things do these things with her before it’s too late. We’ve just returned from a 15 day cruise. It was great for me too seeing other places and the big plus I didn’t have to make the bed or cook. I’m my wife’s full time carer and I try make her day happy by smiling. It’s hard being a carer.
I wish you the best.
Thank you I will try and start making a list of must dos with her xxx
My wife has CBD diagnosed in 2013. Her mother was from Shropshire (Clun). I would recommend you get your GP to refer you to the palliative care team and hospice. They have experience in pain control and rare diseases. My wife hasn't suffered much with pain throughout the disease and we haven't had to give her anything stronger than cocodamol. Wishing you well and hope and pray you get as good care as we have received throughout our journey. Love Ken & Doreen.
Thank you xxx
MumwithCBD,
My heart breaks when there are new people to this forum, but this cruel disease but rare disease continues to strike people all over the world. I believe that you have come to the right place as a care giver for information, but most importantly support and love from others who have gone through what you are going through now.
My wife passed away from CBD last year. She too had anxiety and was very down, because she had to rely on others when her left arm/hand became useless and she lost her voice. A very independent women had become dependent on others.
I think the most important thing is to continue what you are doing. Showing her love and cherishing her.
Wishing you wisdom and strength as you care for your Mum,
Bobby
I’m very sorry to hear this.. thank you for your message x
The old bag and I appear lucky compared to most, she only takes anti seizure and constipation meds. Also she has to keep being a wife and nag.
Lol x
Hello. Please know that you are welcome on this site, though we all dream of a time when communities like this won't be needed. My husband's CBD began in 2006 and progressed slowly till 2013; in the last year, his decline has accelerated. As others have said, every case is different and yet many behaviors are common to this dx. I would agree with the person who recommended staying close to a palliative care team. It has been my experience that I need to be an aggressive advocate for my husband, even in seeking palliative care therapies. I have done a lot of "educating" of medical professionals to CBD, since it is so rare. Advice to get something happy into each day for your mother -- and for you-- is important. It will be hard, very hard, for her and for you, but you will meet angels along the way who will help you. Best...Marilyn
Thank you for this xx
My mum has PSP
Mum has PSP
My Nanna has CBD
CBD
