My dad was diagnosed with CBD in 2021. After many assessments and consultations with different nurses and neurologist.
Although, his symptoms began around 2016/2017. The GP initially said he was depressed and prescribed antidepressants for 2yrs. He was then referred to the memory clinic for a dementia assessment. Dementia team completed their assessments but my dad did not fit into a category.
I asked to be referred to consultant neurologist. We ended up seeing 3 different consultants, having two CT scans and one MRI (all scans were clear). It wasn't until we had a PET scan CBD was diagnosed.
Today my dad is wheelchair bound. He manages to transfer himself from chair to chair but unable to stand. His speech is slurred at times, his right side is becoming weaker, his arm will freeze in mid air. He frequently passes urine and has the urge to open his bowels. Memory, short and long term is affected.
The consultant has told us he is still in the early stages of CBD. The consultant has also said frequent passing urine and urge to open his bowels is not part of CBD.
As a family we are concerned if my dad is at the early stages then what are the later stages...im not sure the consultant is correct?
Any thoughts on the above would be very much appreciated. We feel in limbo.
Many Thanks.
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RW22
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My mom is going through it for past few years. She has been diagnosed with CBD after she had an unconscious fall. The MRIs doesn't reveal anything. The diagnosis is just based on symptoms and behavior. Until 2019, what we have observed is stiffness in her right leg and needing help to sit in a car and coming out of car, but after that she slowly declined with her walk on right leg, no urine control, unable to eat with right arm, severe bending and finally a fall to get it diagnosed with CBD in mid stages (mid of 2020). Since diagnosed, she rapidly declined with her speech, droopy eyelids(Ptosis), largely drowsy and now she is completely wheelchair bound and completely dependent. It is unfortunate and heart breaking to see our loved ones going through this. She is unable to speak now and have lot of cough that sounds it is coming like from so deep. Every patient exhibits different problems but this is a slow painful process that is with no help from medication perspective. Only thing we could do is to show our love as much as possible. Hope this helps you know where your journey with your dad is going to take.
Hi, this is almost identical to our story. My mum was diagnosed last February after a similar chain of events and timescale. I can share with you our experiences and current situation. Let me know how much you would like me to share as I would describe my mum at mid stage based on my research and what I have learnt. It’s a truly horrible and upsetting disease we are gradually coming to terms with as a family.
My mum was only diagnosed (although this is never confirmed until post mortem I understand) when we were exasperated by the normal channels and managed to build a file of doctors notes and get referred to a neurologist in London who we came across in a national newspaper article. He specialises in something called FND which my mum was convinced she had. We paid for a private consultation which was the best money we spent to help us understand and plan for the future. Mum was told during the course of about 5 years she was depressed, had fibromyalgia and had tests for MS. It was stressing mum out as she knew something was wrong but felt she wasn’t being heard or taken seriously. Before we organised the private consultant a doctor essentially said he had no where to go and sent mum home feeling lost. The private consultant studies CBD and PSP also so he was fairly sure what it was and helped us continue assessments through the NHS through letters and reports. That was Oct 20 and mum had lost the ability to walk without an arm or stick, it was only mobility that was an issue at that point. Fast forward to today and mum cannot get around without a wheelchair either at home or outside. Mums cognition is very poor, normal day to day actions we take for granted cannot be done. Mum gets very confused and has lost concept of time and short term memory. Mums appetite is decreasing and she sleeps a lot during the day. We have someone quoting for a wet room conversion this week as showering is almost impossible in a cubicle, we have temporary bathroom aids to help. In the not too distant future we will need to organise carers and the possibility of a hoist system. We have experienced quite a decline since Christmas which has taken us by surprise a little as no warning. Almost overnight. My dad is main carer and he is doing amazing but it is an incredible emotional journey for our family which everyone on this forum will relate to. The strength of family and my parents marriage is our godsend. My parents moved closer to me to a bungalow not long after diagnosis (a 220 mile move) which was an upheaval but the best thing they could have done. I hope this helps a little. Take care but feel free to ask any questions.
Oh gosh, thank you so much for sharing. I'm so sorry!
We are also in the process of having adaptions made to my parents home (plans). It's really difficult on what to do for the best?
The occupational therapist has suggested a ceiling hoist and for downstairs living to be considered sooner rather than later (he currently has a chair lift).
My mom is dad's main carer, I help on my days off. We now have a ramp so we have wheelchair access which allows us to take him out for a couple of hours.
We are seeing a major decline with the cognitive side of things.
His short term memory is pretty much non existence.
Long term memory is also affected.
It's so depressing, more so for my poor dad. Some days I'm absolutely fine and other days I have complete meltdowns.
Sorry to hear the situation which you will have gathered is so familiar to many here. My mother has CBD prob started 2017. Although she struggles to sequence things or follow instructions her memory is still good and she can still speak. But she has zero movement of her left arm and everything else is very slow. She cannot even stand now without a belt stand aid. She had a lot of problems about two years ago with control of bladder especially at night. Incontinence pads weren't enough to last her a night. She agreed to have a catheter which has been a major benefit. Bowel control is variable but she also didn't necessarily realise when she'd been. Now that she's in a nursing home they have her on regular laxatives which have helped to keep things 'regular'. So yes these can be related to CBD. As you will discover many neurologists have little understanding of the day to day effects of CBD.
I can relate to everything in this thread. My husband started showing symptoms 2017 probably earlier. He went to the GP in 2017 and said he thought he was getting dementia - the GP laughed. Stiffness, falls, confusion, lack of coordination, mood swings, not able to count.....we were more and more mystified. The neurologist (last seen Nov 20) will only commit himself to Frontotemporal dementia. It was a geriaitician who saw Alan in hospital a year ago - he had been admitted not being able to stand and with a bad UTI - who suggested PSP/CBD. I've found out most of what I now know online and through this forum and PSPA, also the MSA trust. Alan returned from hospital doubly incontinent with a catheter, bedbound except being hoisted into a special wheelchair so long (Alan is two metres tall) that it can't be moved out of the room (downstairs, was our sitting room), one arm and hand already contracted, now the other one is the same. He lies on his back not moving except for neck and head. He loves food including beer and crisps and so far is managing his swallowing. He speaks very little, he communicates with his eyes. Yet he is still Alan - he understands so much, he enjoys quite complex films and documentaries on TV, he loves watching the grandchildren on WhatsApp. We have wonderful carers 4 times a day and in July got CHC funding for which I'm eternally grateful. When applying for that, get a good advocate - we had a specialist neuro nurse from our local hospital. I could write a book but no time. Im the sole carer - family live away. What happens if I'm ill??? How many years will it go on???
Bluebell, like you I'm sole caregiver for my husband who also started showing symptoms in 2017. And, like you I am plagued by your 2 questions. My husband needs my assistance in all aspects of daily living and I try to just meet every challenge as best I can. It seems like every improvement we make comes a bit too late ..... bathroom remodel with roll-in shower finally done but he has degenerated to the point that, even with all the grab bars and the pull-down bench he's too unsteady. Yesterday the V.A. delivered a shower transport chair that we hope will solve the problems. It's becoming very difficult for him to feed himself anything other than finger food. I'm always trying to prepare nutrious meals that don't require utensils as he doesn't want me to feed him. It's difficult to know how to plan for the future but still stay in the present, finding joy as best we can. This forum is a comfort for sure!
Reading your post again RW22 I can see why the consultant thinks you wouldn't qualify for CHC - yet...Your dad sounds to be about where Alan was before he went into Hospital last March. He was there for nearly a month and the deterioration was unbelievable. Apparently any infection - like a UTI - can cause this. If you haven't done so already, get informed about CHC for the future - the PSPA has really useful literature and there is also an organisation called Beacon to help you through the process. Although I understand that Multiple System Atrophy has different root causes, I also see similarities with CBD. The MSA Trust fact sheets are very good - there's one on bladder and bowel - a constant issue for us! Very best wishes - you know you're not alone.
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