Cerebral Palsy Scotland

Bernie Hunter: Lockdown dancing

Over the past few months our lives have been far from normal; we have seen big changes due to COVID-19. The lockdown restrictions are in place for a very important reason, to keep us all safe of course but it doesn’t mean that we can’t still cheer people up during this uncertain time.

In May, the country was well into lockdown and the weeks were going slowly so I wanted to do something to cheer people up. Along with my family, we decided to dance at a safe distance in our street. The weekly Clap For Key Workers was always a heart-warming moment so I thought that it would be nice to start dancing after everyone clapped and this is exactly what we done.

We danced to the song ‘Saturday Night’ with all of our neighbours watching and joining in, it was lovely to see people coming together at a safe distance. I got some real enjoyment out of dancing out of my wheelchair in the street too, it was something that I never thought would happen- strange times indeed. At the end of the dance, I could feel joy as everyone was clapping and smiling. The feeling that you have made a difference to someone’s day is brilliant.

My neighbours played their part too by staying out to support us, providing the music and filming the dance which we greatly appreciated. Like most neighbourhoods, people don’t really have time to chat to you as everyone has busy lives but since lockdown, that has all changed.

I would just nod and say hi to my neighbours before this situation so people didn’t really know anything about me apart from that I use a wheelchair for my mobility which is totally understandable. It was really interesting to see the reactions from people when I came out of my chair and danced, I felt like people were getting to see a different side of me which I was glad about. I love to show people that my Cerebral Palsy doesn’t stop me, I can still do activities and dancing in my street was perfect to raise awareness about disability.

We danced again at the beginning of June, this time to the song ‘Macarena’ and I noticed that everyone was more confident to chat to me. People were now cheering me on whereas before they were kind of shy. So, something positive has come out of lockdown- who would have thought.

I am delighted that I managed to raise some funds for Cerebral Palsy Scotland too by doing the dances, a special thank you to my neighbours who kindly donated- the total is £280 which will go a long way to helping children & adults living with Cerebral Palsy.

Keep safe everyone!

Jon McFarlane: Lockdown life

My name is Jon McFarlane, I am 23 years old and have cerebral palsy. I started attending Bobath when I was 2 not being able to walk. Now I have international caps in CP football and this is thanks to the hard work that the fantastic team at Cerebral Palsy Scotland do every day.

Working from home
I am currently studying for a PhD in economics at the University of Strathclyde. My research and my university are something that I am passionate about and genuinely have missed being on campus every day. Our department has been very supportive both before and during this situation and this has been important in transitioning to working from home.

I struggled to work from home at first. I enjoy working in an office environment with others. I am a people’s person and like to have a conversation at any given time.

The thought of working from my room alone, isolated, was worse than the reality. I still have regular catch-ups with my peers on Zoom and meet with my supervisors online a few times per week. Dr Grant Allan and Dr Gioele Figus have been fundamental in supporting me to adapt to working from home and I cannot thank them enough.

Cycling
Without football and golf, I started to look for new sporting ventures. I got myself a bike, got all the gears switched to the left and off I went. Cycling since lockdown has been great. When I have needed a break away from work or needed time alone to let off some steam cycling has been the ideal remedy. It provides exercise, Vitamin D and a challenge.

Reading
Another opportunity that lockdown has given me is time to relax and read for enjoyment. I have used this opportunity to learn about the brain in a lot more detail than I had previously known, and this has helped me understand cerebral palsy more. This understanding genuinely has made me feel happier and content, and without lockdown, I would never have had the time to do this.

Some helpful tips when you are stressed/sad/ anxious/ needing support

Tip 1: Don’t watch the news
The media thrive on negativity and portray negative images of the deaths and infection rates of COVID-19 etc. Although this is important to know and understand, if you are feeling down it is not a good idea to see any negativity – as my granny says “out of sight, out of mind.”

Tip 2: Use technologies available
Apps like headspace and calm are fantastic for both adults and children at helping calm the mind and guiding yourself through stressful times. Mindfulness and wellness are essential right now.

Tip 3: Reach out to your friends and family
These people are there for you. Although you might think “they have their own worries, I won’t bother them”, it is beneficial for everyone to know that everyone else is doing okay.

Tip 4: Ask for help if you need it

As I said, I’m happy to chat anyone – parent, carer, or have CP yourself! Also, Cerebral Palsy Scotland have weekly Zoom coffee and catch ups and are there at the end of the phone or the computer to help, so please reach out if you need to.

Please stay safe, look after yourselves, enjoy life as much as possible and I will see you all soon.

Coming for therapy as an adult

by Jill Clark

In this blog I am going to talk about how Cerebral Palsy Scotland can provide therapy for adults who are living with cerebral palsy (CP).

I am also going to share my experiences of getting therapy as an adult and other adults’ experiences of therapy as well.

How does Cerebral Palsy Scotland support adults?

Cerebral Palsy Scotland provides specialist therapy using the Bobath concept to those living with cerebral palsy in Scotland. Founded in 1995, the charity has grown and developed, both in the services that are provided and the number of people the centre sees. Cerebral Palsy Scotland offers support to anyone with a diagnosis of CP, regardless of their age or location, and try to reach as many people as possible at the centre, online, and in their own communities.

There are three different types of therapy offered at the centre: physiotherapy, occupational therapy and speech therapy.

Physiotherapy is when you work on your body and muscles to make them better. Occupational therapy is when you work on skills like washing, dressing or cooking. Speech therapy is when you look at your ways of communication and eating/drinking.

When Cerebral Palsy Scotland started it was just for children, but in April 2012 the charity started to provide therapy for adults with cerebral palsy too and it has been a great success ever since.

If you want to start to come for therapy sessions, you will get a free first assessment where you meet two therapists to talk about you and look at what you can work on or towards.  Some people come for just physiotherapy because they are having pain and some people come to work towards their goals like cooking or getting dressed.

Jill

Now I am going to talk about my own experience of Bobath therapy as an adult and share other people’s experiences too.

I am 27 and have cerebral palsy. I am in a wheelchair and use a communication device.  Due to my cerebral palsy my muscles get tight, especially my legs and hips.  I go horse riding and that helps but last year I started to feel more pain.

So I asked to come to Cerebral Palsy Scotland for physiotherapy to help my body to get looser.  I had a few sessions with two physiotherapists and we looked at how I sit in my wheelchair because that can be a help with my muscles. The physiotherapists changed my wheelchair a bit to help me to sit me better and that has helped my muscles a bit. And over the past few months the physiotherapists at have been helping myself to get a new wheelchair. So being an adult with cerebral palsy I think I will need input from physiotherapists at Cerebral Palsy Scotland as I get older to keep me comfortable in terms of my sitting and also my muscle pain.

Now I am going to share other adults’ experiences of therapy at Cerebral Palsy Scotland as an adult.

Kirsty

Kirsty is 24 and has quadraplegic cerebral palsy which means that she has spasticity in all four limbs so she finds fine and gross motor movement difficult.

Kirsty started to come to Cerebral Palsy Scotland as an adult when she was 22 and she tries to come to the centre every 3-4 weeks for therapy. Kirsty comes to  work on a lot of things. She explains:

“Trying to walk, I spend a lot time trying to weight shift and trying not to move all my body as one. Trying to not arch my back. Trying to sit on one side then the other.

“I learnt how to deal with change and count money and fold up clothes. We work with my hands because they would not rotate so I found it very hard to get anything onto the palm of my hands. So we did a lot of games with my hands and used toys to help me to achieve this experience. I was very happy. I couldn’t fold up my clothes neatly so now I can do that. I went to the kitchen to make some food to work on my fine motor skills.”

Kirsty and her family has built up a friendship with the therapists here, especially Leen and Petra. Kirsty likes that that the therapists are very understanding of her CP and she likes that the therapists talk to her and not just to her mum or PA. Kirsty thinks they just are fantastic.

Kirsty has got a lot out from coming to the centre and she would recommend Cerebral Palsy Scotland and she explains why,

“I think it’s a really fantastic place to be part of even though I have cerebral palsy that I don’t really like having, a good thing about having CP is that I have Cerebral Palsy Scotland. It’s like a second home for me.”

Marion

Marion is 35 and has dyskinesia cerebral palsy which affects all her movements, limbs, muscles and speech. Marion comes for ten sessions a year at Cerebral Palsy Scotland to work on a lot of things. She explains:

“My goals are trying to open my chest more, minimising back pain and just keeping my ability to weight bear. I work on my sitting on the bench and over blocks on the bench to help to open my chest and I practise standing. I also work on my legs and hips.”

Marion thinks very highly of the therapists at Cerebral Palsy Scotland and she explains,

“The therapists have always been very understanding with everything in my life. The therapists have done great supportive letters for trusts or other professional people for me and they are easy to get in touch with. Also they are really friendly and helpful.”

As Marion has been coming to Cerebral Palsy Scotland for many years it has been a big input in her life, she explains “Without this input over the years I don’t believe I could be active and flexible in my body which means  I can do all the activities that I do.  For example, wheelchair dancing or working on my computer, and using my talker.”

Marion would definitely recommend Bobath therapy to any adult with cerebral palsy and she explains why,

“The therapy might help them do their activities easier or help with any pain in their bodies.   Also they might get help on other issues too.”

 

Enquiries and funding

As you have just read about, Cerebral Palsy Scotland does make life better for adults with cerebral palsy. So if you are an adult with cerebral palsy why don’t you come and see us to find out if we can help you in any way.

And, if you are aged 18 or over, you may be able to apply for subsidised therapy sessions at our Glasgow centre, via our Helping Hands scheme.

You can also call the centre on 0141 352 5000 or email:  info@cpscot.org.uk

Keeping cosy over winter

Bernie‘I’m going to be warm this winter’…Bernie shares some tips on how to help keep yourself cosy for winter 2020.

People who have cerebral palsy can feel very cold sometimes as the disability can affect circulation so it is really important to keep warm, especially at this time of year. Winter is not that nice for anyone but people cope with going out on freezing cold days and as they can keep warm by walking about, they just get on with it but it is different if you have limited movement.

Dress appropriately for the weather

I put on warm boots, my feet are always cold due to my circulation but the boots really help.

Take a hot water bottle out with you

This really keeps me cosy, I put it on my lap and it heats me up within minutes, it lasts for a couple of hours too… just make sure that the lid is on tight though!

Blanket

I have a nice soft blanket that I put over my lap when I go out, to help keep my legs warm.

I do all of these things and they really make a big difference- it is better than feeling cold all day!

*Bonus Tip*

If you are a wheelchair user, you may know that it can be as real challenge to go out and about in the ice or snow as the wheels just spin which leaves you stuck. Unfortunately, there is no way to overcome this apart from having someone to hold the back of your wheelchair to make you feel more secure.

Enjoy keeping cosy!

Finding accessible gifts

by Bernie Hunter

Finding the perfect present to buy anyone can be a struggle but what if you are buying for somebody who has got additional needs? In this blog, I will explain why it is so challenging to find accessible gifts.

Shopping for presents is a big task that requires a lot of thought, but if you are buying for your family member or friend who has cerebral palsy it is totally different. Children love new toys, but some toys are hard to play with if you have cerebral palsy.

Think about a simple toy such as a musical teddy bear that you press a button on the bear to make it sing. But not everyone can press a button as cerebral palsy can affect hand movements, which means that the child has to rely on other people to press it for them and that is no fun.

Buying gifts for adults with cerebral palsy can be hard too, as it needs to be a product that they can manage to use. Slippers are an example of an unsuitable gift, as they just fall off your feet every time you move. Even in your chair they slip all over the place, so I personally prefer slipper boots or cosy socks.

There are not many accessible presents available to buy in shops, so the best option is usually to do some research and see what is out there. I really would like to see shops selling an accessible range of gifts because it is very important that children and adults receive presents that they can easily use.

I would love to hear if you have bought or received any great accessible gifts. Let us know by getting in touch on Cerebral Palsy Scotland’s Facebook page.