Our lovely, independent and previously very active mum, Chris, was diagnosed with CBD on 16th April 2024. Her symptoms started out over 3 years ago with loss of movement in right fingers, then a clenched fist which spread to right arm and shoulder.
After a couple of falls at home (mainly down steps), mum really started to lose confidence so we moved her bedroom downstairs and built a step free en-suite wet room and she relied on more and more help at home from friends and neighbours.
In July 2023, she had severe pain in her lower back and legs and was admitted to hospital - she was discharged home with a 4 week care package in place for carers to help her in the morning and evening - however, mum never really regained her independence and as she lives alone, it became clear that she needed a 24hr live in carer to support her in this next phase of her life. We found some excellent carers from Consultus Care who would stay for 3-4 weeks on rotation, this was funded privately.
However, mum's mobility just got worse and worse and was admitted to hospital after a fall in November-23 and whilst she didn't do any damage to herself, the hospital were unwilling to discharge her home without a) completing physio / rehab as an inpatient and b) having 2 carers at home. After attempts at physio, she was moved to a temporary nursing home and after a couple of weeks we managed to move her to somewhere nicer with a higher quality of care and she has remained there since. She misses her home, her garden and is struggling to come to terms with this new reality.
After several years of only being able to see her neurologist twice a year, and originally having her condition diagnosed as dystonia and neuropathy she was diagnosed as having CBD last month. This diagnosis comes after more symptoms became apparent, issues with speech, trouble swallowing, eyes closing, dry mouth on top of the mobility issues. Whilst it's good to finally have a diagnosis, we are devastated by what this means for her. Sadly, her condition seems to be deteriorating at a rapid pace with speech very difficult and unable to hold her head up straight.
Given the CBD diagnosis and rapid deterioration in her condition, we are now re-applying for CHC funding after she was refused in February. Mum is also going to the Botox clinic in a couple of weeks to get some injections to help with closing eyes - she has previously had botox injections in her arm and shoulder with little effect. We're also going through various advance care planning with the Enhanced Health in Care homes team and she will soon start physio at the local hospice as well as bringing care home staff up to speed on the condition.
We're trying to keep her distracted on planning her 80th birthday in August which we'll have either in her garden (if we can keep it looking up to her standards) or at the garden in her nursing home.
After reading so many stories on here, I no longer feel alone and so wanted to share our mum's story too.
