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Lavinia’s story

“I have learned from my experience of caring for mum, so dad does have a lot more support.”

“Caring for my parents was hard but also the best thing I’ve ever done.”

After caring for her mum, who had suspected CBD, Lavinia Pearson couldn’t believe it when her dad began to display similar symptoms. Here Lavinia shares her parents’ diagnosis journey and the care she provides at home.

In 2016, my mother, Diana began experiencing falls. We chose to seek a private appointment to find out what was causing this. The neurologist identified that she had Vascular Parkinsonism, with a possibility of CBD.

Between 2017 and 2018, mum’s symptoms continued to worsen. She developed an uncontrollable jerk to her right arm, and she kept saying it “wouldn’t work”. She also began shouting as if it was hard to get her words out, uncontrollably blinking, she formed a permanently clenched right fist and her legs fixed into the foetal position. All of which, we now know are symptoms of CBD.

I was a pre-school teacher full-time and a Special Constable for Staffordshire Police part-time, but I gave it all up to care for mum. This included, brushing her teeth, giving drinks, feeding, toileting, showering, sorting and giving medication, dressing, cutting nails, and helping with exercises. When it got to the point when mum was in bed all of the time, I also was giving regular pressure relief, putting dressings on skin tears and pressure sores, turning her regularly side, to back, to other side too.

It was incredibly hard. The hardest thing I’ve ever had to do. But it is also the best thing I have ever done too.

To look after your parents when they need you more than anything is the hugest thank you a son or daughter can give and I know I did the right thing. It wasn’t a decision, it was more of a feeling of right this is what has to be done.

Unfortunately, my mum sadly passed away on 1 May 2018. We didn’t get to confirm it was CBD mum was living with. I was told, a post mortem examination of the brain was the only way to receive that, and I felt she had been through so much over the past few years, I didn’t want to then put her through that too.

In the few months that followed mum’s death, I couldn’t believe it when my Dad then started to display similar symptoms.

My dad’s twin was diagnosed with idiopathic Parkinson’s 18 years ago so I wanted to investigate if this is what dad had too. Despite the consultant’s reservations, I did manage to persuade him to run a DAT scan and a week later dad was referred to the neurological community team as at that point, he was diagnosed with PSP.

Key symptoms dad experiences include leaning back, having a frozen gaze, and speech problems. He also cannot walk and has swallowing problems at times.

At first the team tried dad with a common Parkinson’s medication called Sinemet and it seemed to help. However, we’ve have not seen any further improvement despite increasing the dosage.

As with mum, I am caring for my dad at home. But this time is a bit different, as I have learned from my experience of caring for mum, so dad does have a lot more support.

Dad has a hospital bed at home, a super wheelchair that was fitted especially to his size and needs, an electric stand aid (not hoist) to get dad from A to B as he can weight bare, a funded wheelchair access vehicle so he has access to the community plus a fantastic personal assistant who understands Dad and his needs associated with PSP.  The personal assistant only helps two hours per day however, it’s so lovely to have someone who genuinely cares/helps in the way Dad needs!

Dad experiences sudden mood changes and also makes persistent groaning noises that he isn’t able to control, and the personal assistant is very supportive and caring about this.

Since PSP & CBD are so little heard of, I can’t believe my parents have been affected by both.

Nearly every doctor and nurse we came into contact with, hadn’t heard of the conditions before, which delayed the diagnosis and made getting the appropriate care difficult.

An earlier diagnosis would have meant I could have found PSPA sooner and got more support. I remember when I finally found them and read stories from other carers on their website, it was such a relief other people were going through the same thing as me. The care I give and the frustration and guilt that can be felt on more difficult days, it was exactly what I was experiencing.

I look forward to a time when PSP & CBD are diagnosed earlier so families can plan appropriate care and enjoy more time together.

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