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Tracy’s story

“Dad can’t speak anymore but his infectious smile and sense of humour keeps us all laughing.”

Tracy Rackley’s dad was diagnosed with PSP seven years ago. Here Tracy shares details of her dad’s progressing symptoms and how she is treasuring every moment with him.

As a physiotherapist I was aware of PSP and had directly worked with a handful of patients who are living with this very cruel disease. Despite this basic knowledge, nothing could have prepared me when my father was diagnosed.

Dad was 68 years old when my mum and I started to notice that something wasn’t quite right.

Six months into retirement, after working all his life, dad started falling. Unexplained random falls. In the lounge, in the caravan, in the bedroom. We laughed it off, as did he. At that point he was able to get up himself without too much fuss. No injuries just bruised pride.

More and more falls followed, as did a visit to the GP and a referral to MSK outpatients to investigate. Dad was given exercises to strengthen his lower limbs having been told he was just losing power as he was ‘getting older’.

In those 12 months after his retirement we watched him deteriorate to the point where he needed a walking stick to get around. He was also starting to struggle maintaining eye contact with us. His concentration seemed to be limited. Dad always loved a laugh but now he would often laugh inappropriately and this laughter would end with him in tears. Then came the speech problems. Word finding, volume, growling with frustration when he couldn’t find the words he wanted to use.

We got another referral to medicine for older people but was sent away with more physio appointments.

Now, I’m not a neuro physio, but I know my dad and know that what we were witnessing was not the normal process of ageing. I was convinced he had some kind of neurological deficit and both mum and I pushed for a referral to neurology.

By this point I was thinking it was Parkinson’s disease even though he wasn’t presenting with typical Parkinsonism, the traits were definitely there. A visit to the neuro consultant confirmed this and dad was started taking one of the anti-Parkinson’s drugs.  But they made his symptoms worse.

On his 70th birthday we returned to the neuro consultant to be told, based on his presentation and deterioration, this was not Parkinson’s; indeed, it was PSP and there was no treatment.

Determined to keep dad at home, mum became his full-time carer and I reduced my working hours so she could have a break when I was there. I would get him up, shower him, change his catheter bag, dress and feed him. It was bittersweet because I loved spending the time with him, but hated what this cruel disease was doing to him…. taking him away from us day by day.

We moved mum and dad closer so my husband and I could be around to help, and that has been a massive comfort to both me and my parents. They are now only one minute away and I see them most days.

Earlier this year we took the decision to put carers in place. Mum couldn’t carry on as she was as dad needs 24hour monitoring as his anxiety levels rocket if he can’t see one of us. He will try to get up himself to find us then ends up on the floor. This means he has mum up two or three times in the night ringing his bell (I bought it for him as he can’t shout for help), checking she’s there and he’s not alone.

I didn’t cope well with handing over my caring responsibilities to strangers. All sorts of questions and concerns coursing through my head drove me to distraction. I needn’t have worried though. The carers are absolutely fantastic; kind, caring and patient.

As dad’s symptoms have progressed, we can no longer hold a conversation with him. This is a real shame as I used to love putting the world to rights with dad and doing geography and history quizzes with him. Dad tries so hard to communicate but it’s single word answers only now. We have to prompt and wait for him to find the word to say. The sad thing is his cognition is absolutely spot on. He knows everything that goes on and his memory is second to none, he just can’t speak…. or walk… or do anything for himself anymore.

A speech and language therapist is closely monitoring dad’s swallow because he is now struggling to eat safely. We cut his food into small pieces and feed him. He coughs and splutters as the food sometimes goes down the wrong way. He will soon be fitted with a peg and be fed through a tube in his stomach. We know this will be a difficult transition for dad as eating is his favourite pastime.

Dad’s amazing sense of humour and ability to laugh at himself has been turbo charged by his PSP. So, despite the challenges we spend a lot of time laughing and laughing… with him, not at him. His smile and cheeky laugh are so infectious and everyone who comes into contact with him loves this.

It was dad’s 75th birthday in early July. He asked for a party…. dad doesn’t usually do parties, so it was a very strange request. But a BBQ is what he wanted so it’s what he got. Family and friends came from far and wide to share his day. It was emotional and fantastic. He couldn’t really speak to anyone but he had a few beers and the smile on his face said it all. We think this request was his last goodbye. He’s a smart and intelligent man locked in a body that won’t do what he wants, and he knows it’s failing him.

I don’t know how long I have my beautiful dad for and where this illness will take him next. I can only surmise and assume it’s not going to be pleasant but I will treasure every single moment I have with him and give him everything I can until the day he leaves us.

If you are caring for someone with PSP, treasure every single moment you have with them. Ask for help if you need it and don’t leave it too late before you do. There is no shame in asking.  If your person goes in hospital be sure to explain the complexity of this condition and push to be present as much as you can, especially at meal times as the nursing staff don’t always understand the condition.

Tell people that when your person is staring and fixating it’s nothing personal, it’s the PSP that fixes their gaze.

Tell people that if your person is laughing or crying it’s nothing personal, it’s their PSP.

Tell people that if your person is making strange growling noises it’s nothing personal, it’s their PSP.

But most of all, tell people that if your person looks as if they don’t know what’s going on, it’s their PSP.  And in actual fact, they know every single thing that’s being said and done, they just can’t express they know.

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