Matthew’s mum Pauline was diagnosed with CBD in February 2023 at the age of 83.
Here he shares details of her diagnosis and how PSPA’s Helpline has helped to support him as his mum’s symptoms progress.
“In 2022 Mum felt something was wrong. She started to become unsteady on her feet, she had trouble using her left arm, her speech sometimes slurred and with a dry mouth, swallowing could be difficult.
“She thought she’d got Parkinson’s and so did the doctors originally. At a follow up appointment six months later, in February 2023, however, it was confirmed Mum had CBD.
“The Neurologist told us about a charity called PSPA and so I looked them up and got in touch with the Helpline. In hindsight, and looking at PSPA’s materials, Mum’s symptoms all made sense.”
“Unfortunately, Mum’s condition progressed quite rapidly and by August we needed to move her into a care home to make sure she was safe and well looked after.
“The care home struggled to cope with her progressing symptoms, and they didn’t seem open to learning more about her condition, more passing things off due to Mum’s age and what they felt was dementia.
“It was clear we couldn’t keep Mum at that home. After reading some tips about selecting care homes in PSPA Matters, I decided to make an impromptu visit to another local home and had a much better experience. They were open about their lack of knowledge and understanding of CBD but had a receptiveness to learning more.
“I found the Helpline to be a really great resource. Supporting someone living with CBD can be all encompassing. So, it is good to know there is someone to speak to who understands, listens and can really help.
“I’ve rung a few times at a point when I have felt I have done everything I can, and don’t know what to do next. They’ve listened and given me guidance, even sometimes indicating when I need to step back and let things settle.
“I appreciate this support and the information they provide makes a huge difference. I understand Mum’s behaviours better and so do the staff at Mum’s new care home. They’ve have read all the information, improving the level of care Mum receives as a result. Next on my to-do list is to request a Helpline training session for them, which the home is keen to receive.
“I know there isn’t a cure for CBD but I do everything I can to help Mum, and I feel PSPA’s Helpline does the same for me.”
HELP MORE FAMILIES LIKE MATTHEW’S
You can help more families like Matthew’s by donating to PSPA’s Christmas Bauble Appeal.
You can donate on our website or by giving us a call on 01327 322414.
