Corticobasal Degeneration

[Mum4321]

Hi there,

My mum has sadly been diagnosed with CBD 😞 the diagnosis came with such a shock, and at present feeling overwhelmed and lost in what our future holds 😞. I would truly appreciate any help and some advice from people suffering also x

[Fairygirl13]

Hi there,

My Dad was diagnosed with PSP (rather than CBD) almost three years ago, I know how overwhelming it can be when you first receive a diagnosis and it can take some time to get your head around it.

Have you contacted the PSPA at all? They have some very helpful info on PSP and CBD that they can send out.

Please feel free to ask me anything if you need to, hopefully this reply will also bump the post up so some members with CBD also see it.

Sending hugs,

Sarah xx

[Mum4321 in reply to Fairygirl13]

Hi Sarah,

Thank you so much for your reply 😌 I did contact the website and they were lovely!! Really supportive

I think I’m most worried about what stage she is actually at! She stayed with me over the weekend and fell in my room, just lost her balance and I know she is falling at home and not telling me!

And I worry how much mum knows in view of her diagnosis, as she doesn’t seem overly worried! But I’m guessing the CBD has affected her emotions

Is your lovely Dad in a Nursing home? Xx

[Fairygirl13 in reply to Mum4321]

He is now yes, he decided to move into a nursing home 18months ago now. After he was first diagnosed he moved nearer to us to a flat in an assisted living facility, he lived there for a year. I think we both thought, with care and help from me, and with support from a complex designed for older people with some needs we would be ok for quite a long time, somewhat naively I guess - the disease is so unpredictable that what I had planned and prepared for in my head was not what happened.

Dad was also terrible for not telling us the number of falls he had or how bad some of the symptoms were, after the early stage after diagnosis he knew I'd got wise to it and was onto him, and would eventually admit it but it still didn't stop him trying!

The community physio/occupational therapist can assess and provide things that might help, like indoor walkers, trolleys to avoid carrying things. One of the first things Dad got himself even before he moved, was an alarm pendant that he could use indoors but also outdoors for falls/emergencys. Really helped for peace of mind.

He has seemed very stoical about things as well , it has been a very rare occasion I have seen him upset over the diagnosis or his symptoms, I think this is related to the apathy that can be present in PSP.

Sending love to you and your Mum xx

[Mum4321 in reply to Fairygirl13]

Awww, I feel everything you are experiencing! We have got a stairlift, shower aids, trolly and a call button but just think she is still not safe, but despite to remain at home

The thought of putting her in a nursing home makes me really upset, but can’t help thinking it’s a conversation coming

Love to your dad too 🙏💗xx

[Fairygirl13 in reply to Mum4321]

Dad was so so reluctant, he was fiercely independent, and how we managed for as long as we did I don't know, it took many many conversations from heath professionals and almost weekly visits from the paramedics and stays in hospital before he made the decision. Tbh they wouldn't have let him come home anyway at that point - it made me so sad that one day he lived at home and then he never went back with no warning, I wish he had been prepared to think about it sooner so we could have looked together and prepared, even if it was something he wasn't ready for at the time.

Maybe try and arrange some visits (not sure whats allowed with the Covid situation) or some brochures you can look at them together at a time you think is right with a kind of not for now but something to think about approach?

BTW Dad took the move well, it was me that was the wreck!

xxx

[Mum4321 in reply to Fairygirl13]

I know, it’s so hard to think they were so very independent to now this! We did try and get her into sheltered accommodation not so long ago and she did seem quite open to it, but then the place wasn’t quite suitable.

At the moment I just don’t know what else we can adapt in the house to keep her safe as she is just so unbalanced, and even if we did find a sheltered home, she could fall there also!

Lots and lots to think about 🤯 xxx

[Fairygirl13 in reply to Mum4321]

Yes agree, that's exactly where we got to and partly why assisted living wasn't suitable longer term as we'd anticipated- and it is such a lot to think about. Always lots of people to ask things and offer support here though xxx

[fishponds in reply to Mum4321]

Hi my hubby has CBD overbalances very easily so I don’t let him walk unless I’m with him now he has also had a stroke has had seizures and a pacemaker so lots going on he also never seems overly worried about his health I do the worrying for him I think lol x

[Mum4321 in reply to fishponds]

Aww does he 😢 mumIs similar, doesn’t seem that bothered! I’ve just called her in fact and she is making a chocolate cake!! I’ve been in bed all morning finding it hard to motivate myself! 🤣 xx

[LostinHeadSpace]

The diagnosis is a shock, isn't it? One of the standard bits of advice I've seen around here is to quickly do the things she's still capable of doing. You'll find there are more people who understand than you'd expect. And that there are ways of coping and finding bright spots that you wouldn't think.

[Mum4321 in reply to LostinHeadSpace]

My goodness I could have fell off my chair in shock! 😢 I’m just trying to focus on quality of life and making sure she has lots of lovely memories xx

[HelenPSPA Administrator PSPA]

Hi thereSorry to hear about your mum's diagnosis. If you'd like to chat, our Helpline is available Monday to Friday from 9am to 5pm and then again in the evening 7pm to 9pm.

You can contact the Helpline at 0300 0110 122 or by emailing [e-mail]

[Indiana-Girl]

Good morning, Mum4321I am so sorry to hear about your mom. It is one of the worst diagnosis you can receive.

I know first hand how devastated you are. Your life as you knew it is fading rapidly in the rear view mirror. But not all is gone. As others have said, live each day to it’s fullest. Laugh out loud and with abandon when the moment presents itself. Take walks with your mom and remember the special times you have shared. My husband was diagnosed with CBD almost 3 years ago. In that time, he has lost his ability to walk without assistance and cannot communicate clearly. He is somewhat bowel incontinent. He can still feed himself if his food is cut up for him. However, he still has most of his cognition and we still can share precious memories. Your journey may present itself somewhat differently than mine. Read everything you can about this insidious disease but be careful to read from medically sound sources. Prepare yourself for what you will see and she will experience. Above all, pray for her acceptance and understanding and for you to have patience and understanding. One of the blessings of this ( and there are some) is that you have an opportunity to let a loved one know how special they are and how much you love them. Be there for her when she wants to talk. Let her know she is not defined by her disease and with her grace she can show others how to have joy in adversity. God be with you both on this journey.

[Mum4321 in reply to Indiana-Girl]

I’m so very sorry to hear about your husband, it’s just so cruel! But yes you are right, it’s so important to stay positive and ensure she knows how loved she is every day. Thank you for being so lovely ☺️ xx

[Mixee]

Hi, I also have been diagnosed with cod. It took two years. It has affected my left side arm and hand mostly. From what they have told me get my things in order and travel while I can. So I’m trying to do just that. It’s not pretty any way you look at it just take every day as it comes. I’m glad your mom has you, God bless you both.

[Mum4321 in reply to Mixee]

Hi Mixee,

Thank you so much for your message, mum

Is quite similar in she is quite limited in both arms, she has been diagnosed with a rotator cuff injury, however I think it could be due to CBD more so!

I think over the next couple of weeks, I will try and plan nice trips, and start making precious memories

Enjoy your wonderful trips 🙏 xxx

[ARutzen]

Hi there,

Sorry to hear that CBD has entered your family. My mother was officially diagnosed Dec 2019, but had been dealing with the symptoms for years before they could correctly give her a diagnosis. Flash forward a year and 3 months later, things have changed a lot. Every day is a bit of a challenge, but from someone who is a caregiver of someone who is carrying the disease, I find that the best thing is to be as open as you can with your mom. Any questions she has, try to talk to her doctor as much and as often as you can. There are medications she can try to help with the symptoms and I have even tried CBD Oil for my mom - it did help for a while - but unfortunately now, even the higher doses (she's up to 300mg from 20mg) do not seem to be much help.

If you ever need an ear or any suggestions, I am still fairly new (7 months in now) with caregiving with CBD and my mom, but each day I learn something new. I hope and pray you get answers you seek and I hope your mom can find some peace regarding this change. It will be a hard road - but this site has been a huge help!

-A

[Mum4321 in reply to ARutzen]

Hi there,

Ah thank you for taking the time to message me xx

I’m So sorry to hear about your mum, it’s such an awful blow!

I agree every week is different and new symptoms appear, all started very subtle, but now her symptoms are so visible!

It’s so frightening!

I will definitely look into CBD oil - I will try anything to help her.

How are you feeling in view of looking after your mum? Do you live together? Xx

[ARutzen in reply to Mum4321]

If it's ok - I'm going to send you a chat. Lots I'd like to share with you as you are starting out with this fresh.

[Mariawatters]

Hi there . I was diagnosed 5 years ago with CBD but guess I have had it around 7 years . I’m lucky that I’m still able to do most things myself and still work full time . When I was first diagnosed I was in shock . I had never heard of this disease and worse still nor had anyone else . I was pretty lonely until I found this fabulous site 2 months ago .

I would advise your mum to do all she can now ! I was lucky I had a few years to plan amazing trips but now with covid that’s limited , still when we are allowed to move around more I plan to explore my own beautiful country .

Life is still amazing I hope your mum manages to still find joy in what she does.

Ask away at any questions you may have and one of us CBD persons will have an answer I’m sure

Good luck and God bless x

[Mum4321 in reply to Mariawatters]

Hi Maria,

I’m so so glad you doing so well! In fact you sound amazing! 😊

Mum isn’t too great, she was diagnosed last Friday and I’m not sure if it’s just all a coincidence but she looks worse than ever!

She is so very unbalanced, sleepy and very random during conversations! She is staying with me all weekend so I’m hoping a little stimulation and time with my 19 month old daughter will make her a little brighter

I’m finding it hard to chat to her about the future in fear of upsetting her, however I’m unsure if she would understand anyhow! I hate the thought of her independence being taken from her 😞

Thank you for getting in touch, it really means so much to hear positive experiences and feeling supported xx

[Mariawatters]

I have 3 grandkids and I’m fighting so I can see them grow up . I am minding them all this weekend as my youngest son turns 30 . They can’t go out but they can party together in peace . The grandkids take my mind of it all for a while even tho they are exhausting 😅 I hope you think about getting some help as your mum wouldn’t want you to be stressed either .. enjoy your weekend and I hope she loves her special time with you and your little daughter x

[Mum4321 in reply to Mariawatters]

Aww that sounds wonderful!! And tiring 🤣 I hope you all have a lovely time celebrating 🥳

Xxx

[Hortyh]

HiI'm so sorry to hear your news, it's all a bit bewildering isn't it!!

My Mam has CBD diagnosed 2 years ago on my 50th birthday. Its a shock.

I agree that you need to do things now that may not be possible in the future.

Mam now is in a wheelchair outside of the house and doesn't move without Dads help. She topples over quite a lot. She can feed herself if food is cut up and put in her special high sided plate, and now has a feeder cup.

She has a good relationship with her consultant who is supportive, she has had botox in her alien hand to relieve the pain- not sure if it works well, but she wants to continue. Speech is getting worse.

Mam isn't the person she was, but we laugh a lot more then we ever do. She sees humour in it all and is surprisingly accepting of her situation.

They've recently attended some Zoom meetings arranged by the association, so you might find that useful.

Occupational health have been great at getting her whatever she needs.

It's a different future to the one I'd thought she had, but the brighter side is, I make much more of an effort to see them and speak with them, we do laugh an awful lot.

Here to hear anytime.

With all good wishes.

[CamilleH]

My Mom has both CBD and PSP. She was diagnosed about 5 years ago and we’ve seen her decline rapidly in the last two years. It’s been incredibly difficult. Dad was her primary caretaker but they ended up moving in with us three years ago, as it became harder and harder to care for her. She is 100% reliant on us now- has lost all mobility, speech ability and ability to focus her sight. All her food is puréed as she has developed dysphasia and she is fed primarily through a syringe. I’m writing all of this, hopefully to prepare you for what may come. I regret that I lost so much time with her when we were living in separate states. By the time they came to live with, we had lost so much of her. She is able to find joy in seeing her granddaughters and that helps me to keep some light around the situation.

[Wilfsdaughter]

Hi. My dad went to sleep in December 2020...he was diagnosed with CBD around 10 years ago. He went into hospital last October and due to COVID we couldn't see him for 5 weeks, he contracted COVID, fought it but sadly died of sepsis in December. We managed to spend time with the week before he went to sleep.......CBD was a contributing factor to his death. Nothing can prepare you for how fast things can happen, he was very independent, never complained or ask for anything, despite how much pain he was in for so many years.

More research/fundes is needed, as his medication jas little to no effect on him whatsoever! x

[Chelle1981uk in reply to Wilfsdaughter]

I’m so sorry to hear this about your dad how devastating that he had CBD, fought Covid yet passed away with something completely different. My mum has CBD and the medication seems to have no effect on her either - she can’t use her right arm or hand and her mobility isn’t what it used to be. Was your dad still able to talk after having the condition for 10 years? My mum’s speech isn’t what it used to be and I’m so scared that she’ll stop talking altogether one day - just trying to keep her talking as much as possible and getting her to read a book out loud with me etc x