Cerebral Palsy Scotland

Exploring the connection between cerebral palsy and anxiety – Guinni Baker

As part of Cerebral Palsy Awareness Month, Guinni shares her story of being an adult with cerebral palsy and experiencing anxiety. 

So I’m an adult now and cerebral palsy hits differently than it did when I was a kid. There are no regular doctors’ visits or physio sessions – no one worries about growth-spurts and leg lengths any more. I don’t get called names in the playground, (not that I’m aware of anyhow.. though I did recently find a note in a social area that read ‘Ms Baker leans and walks.’ I’m a depute head teacher in a secondary school and you bet I do, wee yin! Thanks for noticing!), I’m pretty aware of what I can and can’t do and moderate as needs be. The children in school almost instinctively swirl round me on stairwells, ensuring I always have my trusty bannister to my right and family, friends and colleagues are amazingly supportive and understanding. What I find difficult can mean that someone else takes on a little bit more and its so appreciated. So many little points of assistance in familiar spaces with familiar faces which make you feel comfortable and – I don’t know how else to say it – normal.

I wanted to talk about anxiety in this blog. It’s been a huge and, at times, pretty crippling part of my life. I had a complete breakdown around twenty years ago and had two awful years recovering from it. I didn’t even know what anxiety was at the time but I could barely function and genuinely felt I was losing my grip on life completely. Looking back now I can see that what happened then wasn’t isolated. But I had no knowledge or understanding – just fear.

I couldn’t do my hair as a teenager. It drove me crazy. I was 16 before I successful managed a ponytail and that’s still about the most I can do with it. The frustration and upset of that was out of all proportion to what I was trying to do but hours in front of the mirror and a hairbrush that got chucked across the room was not unusual.  (Shout out to my two sisters who were always happy to save the day, the mirror and my sanity lol)

I recently had an adult assessment at Cerebral Palsy Scotland and asked them about the link between cp and anxiety. Was there one? The physiotherapist said that I have to work harder to get to the baseline of daily activities and over time that can cause stresses and anxiety. This really hit home for me. I don’t like change – never have but I started to wonder if this could go some way to explaining that? Staying in familiar circumstances means I don’t need to rev so hard to get by – in familiar places and surroundings I know what to do. I don’t need to wonder if I’m going to hit a wall; get stuck; can’t do it; need help in an unfamiliar place with unfamiliar people. That’s no way to go through life though and I do fight it as much as I can. I especially hate travel – that just seems to click all my cp buttons. I like being places though so every holiday planned is a love/hate/fear three act play. Never regretted going anywhere though!

I went through the worst of it before having my children – and I’m so glad I did. Having children is such a physical endeavour – in every way – and I found a lot of it painstaking! 52 poppers to change nappy / vest / baby grow. I wouldn’t bathe either of them as babies- my husband did it until they could sit up and don’t even start me on car seats and buggies!! My son, as a baby, would instinctively roll towards my dominant hand when I went to lift him from his cot. That always made me smile.

They are both now teenagers and help me in so many ways daily. My daughter stopped me from referring to my ‘bad hand’. She said I shouldn’t talk about it that way.

So now as an adult the challenges are different. I don’t want to restrict myself because I’m scared I can’t do something immediately and comfortably. No one ever said no when I asked for help and no one should ever feel too proud to ask for help when they need it – whether it’s carrying drinks back from the bar or talking about mental health – there’s always someone who will listen and move you on a little.

In the last year I’ve tried to take far more pride in what I can do rather than focus on what I can’t. I feel more connected to my body and I try to develop that connection in the gym and on walks so I can take pride in the progress I make (feeling wee, hard muscles on my cp side following my shaky efforts in the gym gives me total joy!). So for my final blog of CP Awareness Month I’m going to leave you with my top tips:

  • Develop what you can – maintain what you can. Move as much as you can.
  • Take help when you need it – don’t avoid experience and never make a decision based on fear
  • Talk about mental health. Saying you’re feeling anxious today should be as natural as saying ‘ you’re getting cold’.
  • Get in touch with CP Scotland. Their support, warmth, knowledge and kindness is amazing
  • And finally, always carry hand gel if bannisters are a necessity for you lol

Living as a person of colour with cerebral palsy – Ruthanne Miller

Hello, My name is Ruthanne Miller, I’m 26 years old and I am from London, I have Diplegia, cerebral palsy.

I also have chronic pain and as a person of colour in my personal experience when I tell medical professionals that I am in pain I feel like they do not understand my condition or severity, and they imply it’s in my head. This is because as I am diplegic but able to get to my local doctors without need of my chair, they see me as capable and express dismissive actions. In order to combat this I have utilised my PA’s to come with me to my appointments which helps express the gravity of the situation.

When not in pain I love to go to concerts with my friends. Sometimes it is hard to socialise, it can be a challenge to make new friends, my social group *SHINE* put an end to this and I’m excited to see them again. I like to bring awareness to cerebral palsy and other disabilities on social media as I believe awareness is key.

In the future I would like to work with children with disabilities, as one of my most fond memories is enjoying time with my teaching assistant and them helping me in my starting steps to life. Towards this goal I have completed my level one Maths and English at college and will soon start my level 2. I used to see revising as an obstacle but as I have set a goal That I WANT I know that I can get it done which makes studying and growing somewhat fun.

As a black person there are certain stereotypes you have no choice but to overcome such as, “Your strong don’t talk about how you feel” this one is a very self-destructive and mentally draining.

Another thing they say is … “You have no choice but to outperform everyone else if you want to even slightly stand out” this gives you a feeling of no self-worth and makes it hard to appreciate yourself and your achievements. I make it my duty to surround myself around positive people, which in this day and age is like a needle in a haystack – so I’m thankful for who I have.

I think that more education should be taught in schools about all disabilities not even just cerebral palsy and the fact that not all disabilities are visible. In the future,  I hope to see a more inclusive society and better understanding of what Cerebral Palsy is in adults, I can’t wait to see this day.

Barry’s holiday to Sandpipers Southport

As part of Cerebral Palsy Awareness Month, Barry shares his experience on a recent respite holiday to Sandpipers in Southport. Barry is currently writing his own e-book that will be published online to raise money for Cerebral Palsy Scotland.  

Who I am.

My name is Barry Smith, and I am 45 years old, with Cerebral Palsy which is a physical disability, down to me suffering from I am in a Power wheelchair, and I use an SL50 Lightwriter. I live by myself, but I get support for the things I couldn’t do for myself.

Going on a respite holiday

On the 12th of February of this year, I got a cab to Irvine railway where I booked the ramps to let me get on to the Glasgow Train by myself, I had my bag on the back of my wheelchair with everything I needed for the week in it. When I was doing this I remember I felt so happy. As soon I got off the train in Glasgow, I went for the London train before I did this I asked if could I go to first class because the staff on the train came round to ask do you want food and drink, When the person came to ask would I like anything I typed on my lighterwriter by using my big toe, this is because I hurt my fingernail one day before this and has a bandage over it, down to me doing this it is hard to type on my communication aide what I want to say to them.

When the train man came I asked if could I have a coffee and can he could put my straw into it for me. When I was on the train for about two hours, my stop was Wigan North Western then I had a sort five five-minute walk over to Avanti West to get my last train on to Southport, by this point I was feeling so happy. As soon as I got over to the next train I was told by the train man the train wasn’t on to Southport because of this we were going to put a bus service on to Southport. About an hour later, I got to Southport. As soon as I got off the bus in Southport, I made my way to Sandpipers by walking because I had been in Southport for four years, I noticed some of the shops and the pubs have closed down.

Picking the right room is a big part of having a great holiday. Here is a guide to the rooms at Sandpipers, including their many features and facilities, to help you make the ideal choice. Revitalise Sandpipers offers full board accommodation on the shores of Southport Marine Lake. Take in lovely water views, go for a dip in the hydrotherapy pool or simply enjoy the newly refurbished R Club Lounge and restaurant.

At the end of the day, retreat to your fully accessible room. All en-suites have wheel-in showers and there are also two separate bathrooms for assisted bathing with hoists and bariatric equipment, and Arjo baths.

Amenities and Accommodation

  • Heated indoor hydrotherapy pool
  • Licensed bar and entertainment area
  • Hair and therapy salon*
  • Internet access and WiFi
  • Sun terrace with balcony overlooking the Marine Lake
  • Gardens
  • Souvenir shop
  • Full board only
  • 30 single rooms
  • 4 twin rooms
  • All rooms at ground level
  • En suite accessible shower room
  • Call system
  • Television
  • Pressure relief mattresses
  • Airflow mattresses
  • Profiling beds
  • Overhead and manual hoists

You can find more information on respite holidays at Sandpipers here – Sandpipers | Revitalise

Christina’s academic journey as a person with Mixed Cerebral Palsy

As part of Cerebral Palsy Awareness Month, Christina shares her experience of education as a person with mixed cerebral palsy. 

As part of Cerebral Palsy Awareness month, I would like to share my experiences of education and the challenges I have had to face. I was diagnosed with Mixed Cerebral Palsy when I was 2, now 26. Throughout nursery and primary school, I received educational support to help with subjects like maths and English. However, this stopped before I got into high school.

Transitioning from primary into high school is difficult for both neurotypical and neurodiverse students – new friends, teachers and subjects can be overwhelming for us all but for me it felt like a nightmare. I found it difficult going between classes, corridors full of students pushing and shoving to get to class on time. I do not use any walking aids, I am VERY clumsy on my feet which means I am prone to falls. Amongst all of that, I struggled with the change of teachers due to the various teaching styles. I had maths teachers who would get frustrated and angry if I did not understand an equation and would sometimes shout. This always made me feel uncomfortable and embarrassed as some students thought I was “DUMB” and my teachers thought I did not study. I had to constantly explain “I have Cerebral Palsy” and “please be patient with me”.

This was sometimes ignored. One teacher told me… “I would never make it in life”. Most days I would go home in tears… school became such a negative place. Those comments have always stuck with me and made me doubt myself. I became extremely anxious about going to school which ended up effecting my mental and physical health. This had an effect on my exam results to which I failed most of my exams.

However, not all teachers were bad in fourth year, I had an amazing English teacher who would always make sure I understood my work and took time to go over anything if I needed it. He made the time to listen to what I had to say and was very patient – I will be forever grateful for his support. The music department was the place I felt most comfortable and where I would spend most lunchtimes. I was a member of the school choir, took part in various competitions and always enjoyed singing for our local community.

Once I finished school I went to college and then university to study music. I have a BA(Hons) in Popular Music and will hopefully receive my dissertation marks for an MScR in Music. I am looking at PhD applications and hoping to apply soon! Though education continues to be a challenge, I would like educators to receive training about the different types of Cerebral Palsy and how it may affect individuals learning abilities.

If you are a parent or carer supporting a child in education, there’s is a range of organisations you can go to for support and advice.

If you are thinking about raising awareness of cerebral palsy in your school, we have a short powerpoint presentation aimed at primary school children explaining cerebral palsy and how it affects each person differently, you can find this here.

Cerebral Palsy is different for everyone- Guinni Baker

As part of Cerebral Palsy Awareness Month, Guinni shares her experience of growing up with cerebral palsy and her mobility. 

I was diagnosed with CP at ten months. My gran, a mother herself to six children, saw that I only ever reached for things with my right arm even when my left was closer and pointed it out to Mum.  My mum, a mother for the first time with me and aged 25, took me to the doctor. The diagnosis came as a shock.

I’m hemiplegic with my whole left side affected. My affected arm hangs at a slightly odd angle and won’t fully straighten or lock. I can’t straighten my hand palm-up and I have poor fine-motor skills on that side. My hips are tilted, as one side of me is shorter than the other, and my left leg is much weaker than the right. My ankle doesn’t move well; my toes hardly at all. I limp to varying degrees depending on how tired I am or how stiff I feel.

I didn’t walk until I was two – actually pretty good I think having spoken to some of the therapists at CP Scotland! My sister had arrived 13 months after me and we started to walk around the same time – she mastered it pretty young. A relief to my mum who up until then often had a baby under each arm!

I had a lot of hospital appointments and a lot of physio. As I grew, I had a great fold across my back as my dominant side grew more rapidly than the other. Mum and the doctors watched it carefully – unsure whether the left side would catch up. There was talk of operations – each sounding pretty gruesome to be honest.

I did step-ups by the thousands, walked lines for balance, had a built-up shoe for some time in primary school and squeezed squash balls to build strength in my arm and hand. I did none of this with grace or patience! My mum made sure exercises were done despite my protests and I will be ever grateful to her for it! I was regularly reminded to ‘put your foot down!’ as I would habitually walk on the tiptoe of my left, affected side. Likewise, I was regularly reminded to loosen my arm which would often curl up into my chest.

My left side caught up, however, and gradually the talk of surgery stopped. Physio and hospital visits continued right the way through childhood and I was always encouraged to do as much as I possibly could – to find a way. As the eldest of five there was always plenty of support and helping hands too!

I have to shout out my dominant side though. It’s something else! On that side I’m strong and dextrous. I would arm-wrestle boys at school and win; on my second attempt throwing a javelin I won a County Competition. I remember a PE teacher at school saying if both sides were like my right I’d be in the Olympics, hahhahaa! Maybe not quite but a nice thought.

Cerebral palsy is different for everyone. No one’s story will be the same anyone else’s. My two sides make me feel like two bodies in one person. One part which is vulnerable and babyish in what it can and can’t do – and one part which is strong, dependable…and could pretty much punch through walls if it needed to. It can be hard to know which you are sometimes.

There’s lots and lots I can do and I don’t think my disability is obvious to people who meet me. But in any given day I’ll make a hundred different modifications to daily tasks. There’s so much I do that’s a little bit different and a little bit harder. When joints are sore (my ankle and foot are the main problems for me) it can make me grumpy and tired.

Over March I’m going to share some of the changes or considerations I make every day to manage what I need to do. I also want to say thanks to the many, many friends and family who help again and again. I want to show some of them off too. I’d like to share a bit about CP and mental health – and also what I’m doing now to maintain movement and physical strength and mobility – particularly to protect my dominant side, which does so much more than it should have to.