Hello - I am so grateful to have found this group as I have felt alone given this disease is rare and even the health care professionals are not aware of it.
I've detailed her journey which may help others trying to get a diagnosis.
In 2019 my Mum's speech became slurred (only the family at this time were aware of it). It was a week after her Covid booster (😐). It was thought she had had a Stroke though the brain scan and other tests did not confirm this. Speech therapy were involved and recognised the deterioration of my Mum's speech over the coming months - something not akin to a Stroke.
My Mum (79) mentioned she felt internal tremors/shakiness in her body during this time. After numerous tests and appointments she was diagnosed with CBD and some type of Parkinson's (they think) in June 2023.
Her deterioration has been very tough on her and tough to watch. She lost her speech completely about 5 months ago. The muscles in her lower jaw are particularly affected alongside her swallow. She has very little swallow left and is on a pureed diet. Keeping food/drink in her mouth is really hard work given the laxity of her jaw. Her back has become very very rounded - again because of muscle wastage. She wears a soft collar during the day as keeping her head upright is hard work. Her mobility is now affected. She uses a walker and even trips to the bathroom exhaust her because of the lack of muscle strength. I have noticed her right left is starting to trail behind her and she is very frightened of falling.
Her sleep is so very poor - she had a sleep test done and have constant interrupted sleep - again due to muscle wastage in diaphragm and other muscles that control breathing/lungs. This makes her even more exhausted.
She is still completely compos mentis - sometimes I wonder if this is actually worse for her as she knows she is trapped inside this body.
My mum is still at home and only now has carers in place. Dressing/undressing is so exhausting for her. She can still mange to prepare little meals but standing more than 1 minute is hard work.
She wakes up with such dry eyes, nose and mouth which is so uncomfortable. Her mouth is hard to open so generally sore and "yucky".
We are very fortunate to have carers, OT, speech and language therapists, district nurses and now the Hospice nurses. The hospice nurses have said they will try to do everything they can to keep my mum at home. If things become too difficult at the very end stage they will endeavour to get her a hospice bed. She has a hospital bed at home with an airflow mattress as was starting to get bed sores.
We have had conversations around the feeding peg - she has refused and I totally understand this. It is still open if my mum was to develop a "curable" infection ie chest infection if she would want medical intervention. We have a DNAR in place.
My mum finds it so difficult to accept this cruel disease and feels sad, angry and frustrated at why this will be the end of her life. We all do.
I am overwhelmed and feel so very sad for her. I get frustrated too as she only vents to me (she communicates by writing or giving me a "look" as only a mum can).
She and I are frightened of the next stages.... what happens when the little swallow she has left goes.... will she slowly starve to death...? This terrifies me. We truly wouldn't let this happen to our beloved pets.
Caring and thinking about my mum has taken over my life at the moment. I average about 4 phone calls a day from health care professional. I work full time and am struggling. I visit at least 5 times a week and help with bedtime etc and do the cleaning, shopping, etc alongside my brother.
She wrote yesterday " I want to go into a cave and be left alone to die" ..... so very sad, but so very understandable.
Written by
Lalamccoy
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Hi. I am so glad that you have found this forum, which nobody wants to be on but which will become an international family for you to help you through. You will feel safe to say what you really feel and rant if necessary and no one will judge you but will be supporting you with virtual hugs and ideas of how they managed certain situations. Love AliBe
Thank you for sharing your Mum’s CBD journey, which is very similar to my Dad’s who very sadly passed away only a week ago.
It is an awful illness and so very sad and frustrating that no one really knows about it or indeed there is no cure.
The changes you have described are very similar to my Dads and sadly in the end his swallow function went too, possibly naturally or possibly due to fear of choking, or both. He was peaceful at home with pain relief and he was accepting that it was his time to go.
It sounds like you have the correct care package in place and the most you can do is keep your Mum comfortable and manage any pain where possible and sadly let nature take its cause. It is heartbreaking though and I am sure anyone on this group can relate to the pressures it brings. I found this community to be a comfort and to help come to terms with the condition that Sadly far too many people seem to be suffering with.
Sorry to hear about your mum, it’s just rubbish isn’t it? It sounds like you have all the right things in place though I understand at times this doesn’t make it any easier.
My mum has PSP and is now eating very, very little and looks, the last couple of weeks, extremely frail. I’m dreading what’s coming next.
You have all the support in place for your mum but you are struggling. I was at that place- trying to balance work, mum, family, teenagers, the dog- and it was too much. I asked to temporarily shorten my hours at work and I also accessed family support through hospice and was allocated a brilliant counsellor. I realise it might not be possible for everyone but it really helped me. Might be worth seeing if there is something available for you?
Yes, I first tried one through my workplace helpline and they just said be sure you make time for yourself to read a book. Someone who understands caring and terminal conditions is better.
hi Lala, i am reading in ur description exactly what happened to my wife: paste and copy. Same symptoms, same timing and progress of the illness. Be very strong, it is very demanding for the affected person and her caregiver. My best.
So sorry that you are on this journey but glad you have found this group as I found it’s the only place where people truly understand.
My mum was diagnosed with PSP finally after a few years of being treated for middle ear imbalance and vertigo! The only reason she finally got the diagnosis was after a fall and her lifeline call bell was out of reach so she spent 10 hours on the bedroom floor until her carer found her the following morning. She was admitted to hospital where they too tried to say they thought it might be a stroke due to her slurred speech. It was only after a scan and me describing her deterioration over the previous months that a doctor discussed the brain scan findings.
Her walking had turned to a shuffle with legs apart and left leg beginning to trail, speech had started to slur ( I remember one afternoon on the phone being particularly bad and me asking if she had been drinking🙈) her eyes changed she wasn’t blinking as much and had a fixed stare just little changes at first but obvious to me and my sister who visited every day since loosing dad in 2020.
I found it frustrating as I knew there as something wrong but her GP wasn’t interested I rang repeatedly the most we got was a trainee doctor come out to take bloods and do her Bp and we never heard back after that. I have no faith in her GP or many of the medical professions ( I was alone dealing with my dad who suffered terribly until the last few weeks of his life when I finally got the GP to come and visit and asked him to arrange for him to be admitted to the local hospice - that place was amazing and the only place that helped and gave him the dignified end he deserved)
Sorry for digressing - anyway as mmm got worse her carers increased to 3 times a day but she was reluctant to let them do much and she would let them do the bare minimum then when they left ring myself or my sister to go round. It was becoming exhausting I am a nurse and work on a busy ward but was getting phonecalls at random hours during the night where mum would say she had fallen so I would go rushing round and she would be sat on her commode but couldn’t get back into bed on her own.
This carried on for over a year and I was getting close to breaking I get my relationship with mum was changing from being her daughter to being her cater.
After the diagnosis she was in a rehab hospital for a time where she received daily physio but due to her being on the floor at home for so long her left foot became dropped and inverted and her mobility got worse not better.
The young doctor who was so lovely with her chatted about the condition and it’s progress and told us we needed to look at 24hr care as it wouldn’t be long before she would become immobile and require a hoist - he also explained the progression of the disease which I had already looked into thanks to good old google!
Everyone I have spoke to have never heard of the disease which to be honest neither had I so I don’t blame them.
We then took the decision to do what I never ever envisaged doing and start looking at care homes. In taking this decision I felt very judged from the “ I would never put my mum in one of those places” gang but it was a joint decision. Mum was in a rented flat so no modifications were allowed and knowing she would need round the clock care it was the sensible option for all of us.
We looked round a lot of care homes and got a feel for them and chose a small one that was in a converted Victorian house which had good CQC score and came recommended from social workers ( my sister works in social care)
Don’t get me wrong it was by no way an easy decision and mum hated us for the first few weeks. She has a lovely big room at the end of a wing which we personalised with all her own things.
She has now been living there since June 2021 there’s lots of activities, family events, entertainment etc if they want it but also they respect decisions of those that don’t want to be involved.
Mum has deteriorated markedly over the last month , she has been totally immobile and hoisted from bed to chair for a good while but this last few weeks she has indicated she wants to stay on her bed. Her swallowing has also deteriorated a lot and all we are managing when we go in each day is half a bowl of dessert and a few mouthfuls of thickened fluids.
I know what is waiting and it won’t be long before the inevitable, mum has chosen not to have a PEG as it won’t improve the quality of her life but merely postpone the inevitable. Her only remaining pleasure was her food and once she looses that she will give up.
The community matron has explained to me that “anticipatory medication” has been prescribed for when needed. This will be a sedation and painkiller that is given at end of life to keep mum comfortable.
So she won’t starve to death like my sister had visions of but as she’s less able to manage diet/fluids she will become more sleepy. Her mouth will still be able to be kept fresh with regular mouth care and she will be kept comfortable with the medication which is usually given by a syringe driver set to release a set amount into her system. She hopefully will peacefully fade away that is my only hope and be reunited with my lovely dad again.
I am going in to visit today and spend time pampering her - I do mini facials, tong her hair, apply body lotion, give her hand massage and look through old family photos just trying to make the most of the time I have left
Sorry for the essay but just wanted you to know my story and that you never need to feel alone you are welcome to message me anytime as I know how scary this journey is
Hi there - it was lovely and so sad to read your message. So many similarities - and yes the staring - I forgot about that.
I totally understand re your mum going into a care home. Again I've been "oh we will keep Mum at home regardless" however I question is this going to be right for her given her mobility is now failing.
Like you my relationship with my mum is changing. She only expresses how she feels to me - this is hard work taking on the emotional side of her feelings too which I so understand but can only manage so much.
I really don't see how anyone without a caring family could manage - my employer is great and I can flex my work, I know many cant.
I want her to be here on the Earth but so wish she didn't have to suffer like she does.
My wife was diagnosed with CBD seven years ago, we are now nearing the end of this horrible journey. After an episode in April we were told she wouldn’t last the day but she’s such a fighter. Comfortable and pain free is all you can hope for. Take care, best wishes, Tim ♥️
Similar to my Mum, she was diagnosed with PSP and CBD, still lives on her own with carers three times a day and me.
She can still just about speak but it’s getting harder to understand what she’s saying.
No peg option for mum she’s fixed on that, and has said she’s already had enough. It’s so difficult to be positive for her when you know there’s no betterment.
Hold her hand, be there and grit your teeth. The hospice advised me if Mums swallow goes, which isn’t always the case, they will manage her end with pain relief and she will be peaceful the hardest part will be for us the bystanders losing the person we love.
That is the hardest part - watching the getting frailer - I can see the frustration in my mum's eyes when she is trying to communicate and then has to write everything down. I feel if she could scream she would.
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Mum's progression of PSP
Medications for cbd
Feeling numb
Mum's battle is over
