Cerebral Palsy Scotland

Being able to stand is so important to me

Marion talks about how she’s enjoying being able to stand in a standing frame once again.

At the start of 2020, way before the coronavirus hit us, I was told I was going to be moving into supportive accommodation.  Unfortunately, due to the support organisation’s rules I will need to use a hoist instead of a stand aid for all my transfers. For me, this was very difficult to get my head around after years of being able to stand, and always been dead anti hoist…   it was a bad word in my head, lol !

Also after years of my Bobath therapy and the therapists’ recommendations to promote weight-bearing I knew I needed to find myself a standing frame to assist me to remain able to stand, even though I will need to use a hoist.

So, I was straight on to Filip, my therapist at Cerebral Palsy Scotland, to ask him if he knew where I could get a suitable standing frame. He suggested a company down in England I could try, however he said there were one in the centre that I could borrow, and did I want to try it out? I jumped at the chance.

I had tried it out the week before lock-down at the centre and got on really well with it. I loved the feeling of being able to stand up straight.

Despite the centre closure, a few weeks ago, we were able to arrange with Filip for my brother to pick it up from the centre. It is now in our front room.

I have been loving using it on a regular basis, it’s so good for my back and legs. It is good for me to know that I can use it no bother, I have the strength in my legs to be able to stand. I can open up my back so that is very important to me. At the moment I’m building my time up,   I’m hoping that I can be in the frame for half an hour.

When I eventually move out into my new house, I hope I can use it regularly and then I will have no worries about losing my standing ability.

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.

Handling tips for new babies with cerebral palsy

Cerebral Palsy Scotland has produced a short video with therapy tips for handling new babies with cerebral palsy.

Are you at home with a new baby? You might not have a formal diagnosis of cerebral palsy. You might be worried about their motor development. If so, our Senior Bobath Physiotherapist Philip Vervaeke has put together a video from his home demonstrating ways to handle your baby, tips on how to involve new positions and passing to other people and how to use household props to keep you and your baby comfortable.


 

Contact us to arrange a virtual consultation

Please remember you can get in touch to arrange a virtual appointment with a Bobath therapist. We are currently able to offer adults or children a limited number of “lockdown virtual sessions” at no cost. If you have access to the internet and a smartphone, you should be able to take part. Contact us for more information and to make your appointment.

For advice or support on any aspect of your or your child’s cerebral palsy (CP), just contact us by phone or email. We’re happy to help with advice about managing your condition, keeping moving, the support you receive or navigating all the recent guidelines.

Keep moving! Therapy tips video

Cerebral Palsy Scotland has produced a short video with therapy tips and suggestions on ways to keep moving during lockdown.

The video was created by Filip Vervaeke, one of our Bobath therapists. Filip is a physiotherapist who has worked for the charity since 2002, and who has a wealth of experience working with both children and adults with cerebral palsy.

The video covers movements you can try in sitting and in supported standing. Filip hopes to encourage all members of the family to get moving, and use the video together.

 

Contact us to arrange a virtual consultation

Please remember you can get in touch to arrange a virtual appointment with a Bobath therapist. We are currently able to offer adults or children a limited number of “lockdown virtual sessions” at no cost. If you have access to the internet and a smartphone, you should be able to take part. Contact us for more information and to make your appointment.

For advice or support on any aspect of your or your child’s cerebral palsy (CP), just contact us by phone or email. We’re happy to help with advice about managing your condition, keeping moving, the support you receive or navigating all the recent guidelines.