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Having Cerebral Palsy by Marion Burns

 

At Cerebral Palsy Scotland, we share the voices and stories of people in the cerebral palsy community. Marion’s words show determination and positivity, and that while life with cerebral palsy may come with difficulties, it is still full of movement, connection, and moments of joy.

Here are Marion’s thoughts on:

 

Having Cerebral Palsy

 

Having cerebral palsy means I have many difficulties.

For some people like myself, getting understood is a big one.

But, although I have many challenges,

I like to see the positive outcomes.

 

Having cerebral palsy means I’m in a wheelchair.

But, that doesn’t stop me dancing around on the dance floor.

I even enjoy whizzing along in the air,

and letting my hair down on a zip coaster.

 

Having cerebral palsy means I need therapy,

to keep me fit and active.

I enjoy cycling, that keeps my legs moving.

So you see, I can still do all the things I love.

 

Having cerebral palsy means I am on my own a lot.

But, keeping up to date with friends on social media,

Bowling, lunch dates, walks.

Means plenty of fun times too.

 

Written by Marion Burns

Tags: Cerebral Palsy, poem

Blog – Johnny’s Story

Eight-year-old Johnathon comes to Cerebral Palsy Scotland for specialist physiotherapy. Mum Caeleigh told us, “We realised something was wrong at a baby class when the other babies were sitting up and Johnny wasn’t.” Johnny went on to be diagnosed with cerebral palsy when he was two years old.

“We first met Cerebral Palsy Scotland when they were doing outreach work in Lochgilphead. Their team are so specialised, and we hadn’t previously been able to access that type of support because we live in a rural location.”

Five years on, Johnny is thriving, but his cerebral palsy can make him exhausted, and he relies on his mum and dad for additional support. Mum explains, “He gets frustrated because he can’t quite understand why he gets more fatigued than other children at school. But he is also so determined. It’s like he wants to say, ‘Well I can do it, don’t ever tell me that I can’t, because I know that I can.’ I love that about him.

Cerebral Palsy Scotland are there whenever we need them, we know if we call or email, they will provide us with advice and support straightaway. I’ve got a counselling session coming up with their psychologist, which is amazing. Without Cerebral Palsy Scotland, Johnny wouldn’t have had access to physiotherapy. I think I would still be at rock bottom and we’d be lost. The therapy and support we have received has been genuinely life-changing.”

To help us continue our life-changing services, please make a donation to our Cerebral Palsy Awareness Month campaign.

Blog – Rose’s Story

Rose was born alongside her twin brother in February 2021. Both twins had some difficulty breathing after they were born, but while her brother stabilised, Rose had an extended period without oxygen. This damaged her brain and caused cerebral palsy.

Rose and her family first attended our parent and baby class, Baby Buds. When she was two, our physiotherapists and speech and language therapist visited her locally in Fife, working with Rose’s family and nursery teachers, over several sessions. This year, Rose and her parents attended a communications course at Cerebral Palsy Scotland. Rose’s mum Louise tells us, “The communications course we attended recently was phenomenal. Rose loved it and wanted to demonstrate everything she had leaned at home.”

Rose uses a wheelchair and a walker. She struggles with speech, but loves to sing along to songs she recognises. She will start primary school later this year.

Louise explained, “What’s different about the care and support we receive from Cerebral Palsy Scotland is that they are specialists. They aren’t working across all different conditions, and they know exactly what our children’s needs are. Rose had a seizure in 2024 and we called Cerebral Palsy Scotland straight away for advice. If we didn’t have Cerebral Palsy Scotland, we would feel very lonely.”

Please make a donation now to our Cerebral Palsy Awareness Month campaign.

Blog – Dr Kirsty Colquhoun

Kirsty Colquhoun is a doctor and Sub Dean of University of Glasgow Medical School. She also has cerebral palsy. At school, Kirsty was discouraged by her guidance teacher when she expressed an interest in becoming a doctor, “He told me, ‘Well I’m colourblind, so I couldn’t become an electrician’ implying I couldn’t be a doctor because I have cerebral palsy.”

Kirsty has gone on to have a successful medical career and is now a consultant in the NHS. Kirsty tells us, “I’m not defined by my disability. I’m not a ‘disabled doctor’. I’m Kirsty the doctor.”

“Often when children with cerebral palsy reach 18 and they are discharged from children’s services, they fall into the abyss. If you are an adult with Parkinson’s or MS, you continue to have access to healthcare physicians who understand your condition and can help you.

With cerebral palsy, there is none of that.

As both someone with cerebral palsy and someone working in the medical field, I can tell you that Cerebral Palsy Scotland bridges the gap for the many adults with cerebral palsy who struggle to access specialist services.”

Please make a donation now to our Cerebral Palsy Awareness Month campaign.

 

 

The 30th Anniversary of Cerebral Palsy Scotland

I’m writing this blog to mark 30 years of services for people with cerebral palsy in Scotland. The 1st of December 1995 was a special day for children with cerebral palsy. This was when the first ever Scottish Bobath Centre opened at Knightswood Road in Glasgow.

I was there with my parents and family to join everyone at this enormous occasion.   My dad, Allan Burns, worked tirelessly to make this day happen. I remember it was a fun day and lots of people were there, including the former First Minister of the Scottish Parliament, Donald Dewar, who officially opened the centre.

The centre was an old clinic and before the building was ready, and I was treated in Knightswood Parish Church hall for my physio sessions. I used to put on my shorts for the sessions, and I remember it was really cold there!

The former school janitor’s house was on the site and was used by families from farther away to stay in while their child was receiving therapy. Now Cerebral Palsy Scotland provides outreach services for children and adults from as far away as Barra and Oban.

There were many different fundraising events from the yearly ball to the bike race. Once when I was about 11, I did a bike ride on a special bike from Elderslie to Paisley with my sister.

Sadly, at the age of 18, like many services for kids with cerebral palsy I couldn’t go there for therapy any longer, and that was a bit of a worrying time for me.

Even though I wasn’t attending Bobath Scotland, they were still providing their services to many children and that was essential, especially for parents.

In time, I went for a few sessions in the Golden Jubilee Hospital with Bobath Scotland, who had temporary accommodation there. I think then they were starting to think about services for adults with cerebral palsy.

In 2009, BoBath Scotland finally moved to their current centre in Port Dundas, and it is a great building for the charity. In 2020, Bobath Scotland changed their name to Cerebral Palsy Scotland.

A few years after they moved to Port Dundas, they started the Helping Hands Scheme for adults with cerebral palsy.  They also run children and adult social events and it’s a great way to keep in touch with all the staff and meet friends.

Over the last few years, they have held an annual Cerebral Palsy Day Conference, this year in the Crown Plaza, Glasgow.

The charity has developed amazingly since it started in that old church hall.

Thanks to receiving my therapy over these past 30 years. I can still do some transfers by standing with support and I believe I am able to do a lot more in my life physically.

I wish Cerebral Palsy Scotland all the best in the future.

By Marion Burns

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