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Claire’s story

“Mum would have received so much more support if she’d had an earlier diagnosis”

Claire’s mum was a really chatty, friendly and family-orientated person until her PSP symptoms began. It would take almost ten years to get to the bottom of her illness.

Here Claire shares details of her family’s diagnosis journey.

“It was my dad who first noticed mum had changed, maybe ten years before she received her diagnosis. In the beginning, it was just small changes in her personality. Mum was a very friendly and chatty person who loved spending time with her friends and family. But suddenly she could get angry quite quickly, but then it blew over really fast too. She would also make odd comments which could be hurtful and really out of character for mum. And the anxiety.

First mum was just anxious about little things, but it grew and grew, and really, in the end she wasn’t happy unless she was at home. Luckily, mum loved watching soaps and reading the newspapers, and that was something we easily maintained throughout her journey. She also loved her fortnightly pub quiz and monthly lunch with friends until her mobility decreased.

After noticing these personality changes for a while, I plucked up the courage to speak to mum. I had visited the GP by myself, to get some advice about mum’s anxiety. Unfortunately, the doctor just suggested mum needed a holiday.

Luckily, when I spoke to mum, she admitted she had noticed some changes herself. She hadn’t cried when my grandad passed away, and she thought that was strange as she can be quite an emotional person. We visited the GP together and mum was prescribed anxiety medication, which did help. Unfortunately, though, mum stopped taking them, as although she had noticed some changes, she didn’t really think there was anything wrong.

Around 2017, the way mum moved started to change. She was almost robotic, and she had a wide open, surprised look on her face all the time.

I went back to the GP by myself again, with a list of all mum’s symptoms. When I look back now, it was everything that is included in the Red Flag list. But the GP just suggested I encourage mum to visit herself.

Mum and I went visited the GP again, and after insisting they do something to help, mum was referred to their counselling service. When mum attended, by herself, they quickly discharged her as mum didn’t think anything was wrong and the counsellor suggested she was only there because I made her go.

At this point, mum had started to fall backwards. She did get a referral to the falls clinic but because she had lost a bit of weight, they just said she needed physio as her centre of gravity had changed.

By October 2018, I knew something was being missed. Mum wasn’t mum and I was determined to get to the bottom of what was going on. We sought a private appointment with a psychologist. I couldn’t believe it we had hardly walked in when he said he could tell there was a neurological issue from the way mum walked.

The psychologist prescribed mum some strong anxiety medication and also helped us get referred to a private neurologist. We met the neurologist the next day, and within a week mum had received her PSP diagnosis following the results of her MRI scan.

We were referred back into the NHS for a follow up appointment with Dr Lindahl. It was six months before that appointment came around and we got a full explanation about what PSP was. As well as what to expect, as it progressed. Until that point, we had no idea what we were facing.

We were so relieved Dr Lindahl referred us to PSPA. We’d have been lost without the support and information we received from other families attending the Coventry and Warwickshire Local Group. None of my grandparents experienced ill health, so we didn’t know what support was available at all. It was so useful having people asking if we’d got this or applied for that.

After increasing falls, mum and dad brought a bungalow in 2019. It needed quite a bit of work, but we were able to adapt the bathroom and get things like grab rails quite quickly, despite at that time being in lockdown.

Mum was still pretty good but around October 2019, she caught a cold and was poorly for around two weeks. After that, everything changed. Mum needed help with most aspects of daily living; getting in and out of bed, getting dressed, preparing meals.

Speech and language therapists had tried to help, since mum’s voice had become weaker. I saw someone else using a Light Writer type device to aid communication so enquired about this. We were put on a waiting list, but it was clear mum’s PSP was progressing fast so in the end I fashioned something using a kid’s toy, to help mum communicate basic needs such as wanting a drink, to eat or use the bathroom.

Despite only getting a diagnosis towards the end of 2018, mum sadly passed away in August 2021, aged 73 years old.

With mum’s anxiety, I was adamant she wouldn’t go into hospital. Any treatment, throughout her journey, was done at home. I am so pleased we were able to give that to mum. It was a big comfort to us all she remained at home, in familiar surroundings too.

Mum deteriorated quickly after beginning to have trouble swallowing and developing a cough. She also had a pressure sore which was really nasty.

When finally, I was able to get a GP at the house, he asked if I had notified the palliative care team. I didn’t realise we were at that point, but the local nurse was really helpful and put everything in place. That meant I could spend time ensuring my sister, dad and her closest friends had a chance to say their goodbyes. In the end, my dad, sister and I held her as she passed.

It took about a month to process it all, after mum had gone. The past few years was such a traumatic experience, I sought help from telephone counsellors as well as friends, family and colleagues. I still occasionally visit the Local Group too.

In hindsight, there were so many missed opportunities for mum over the years. Having the PSP diagnosis earlier would have enabled us to support her more. If we had understood what she was going through all those years, we would have had more patience and understanding. We would also have had a chance to research things such as mobility aids and voice banking, meaning she could have communicated with us for longer.

I would appeal to other families going through the same experience, to listen to your gut and keep pushing for answers if you feel you are being fobbed off. Also, seek help for yourself, get carer in to help and support for yourself too.”

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