Cerebral Palsy Scotland

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

When I went to TRNSMT

My name is Barry Smith, and I am 46 years old. I suffer from Cerebral Palsy, which is a physical disability. Because I suffer from this, I use a power chair, and I have a lightweight voice output communication aid, so if people don’t understand what I’m trying to say to them, I can type it in. I lived by myself, but I received support from SDS and ILF to help with tasks that I found challenging on my own, such as feeding and cooking for myself, and I appreciated it more. Down to me having this, I get SDS and ILF  funding to help me get support for what I can’t do for myself.

Last July, I went to TRNSMT at Glasgow Green for two days, and all year I couldn’t wait for it to come back around again, so I saved up for it. One thing I remember from last year is that when I went into the Disabled Toilet, I found it was tough to close the door behind over. When I went back again this year, they had a van which had a wheelchair lift.. What I saw this year was they made the access better for disability people in the disabled bit; they had a tent for everyone could go and tell out. Three more things to talk about on the access, they had people sign for deaf people to the music, which I think was very good. One more thing, a Beatson volunteer can get you food and soft drinks, you only need to give them your bank card and they chip and pin, but you can’t ask them to get you an over-18’s drink, which I think is right because some people can’t drink because they’re on medication.

The music over the two days, which was the Saturday and the Sunday, was out of this world. Some of the bands were playing that I had never heard of before, but they sounded so good. I can’t wait to go back next year.  Before I end this report, I would like to thank four people who made this happen for me: my Mum, Laure, my PA, Paul, my PA, and the accessibility

My university experience so far

My name is Rachel Collie, and I am 20 years old. I have Spastic Diplegia Cerebral Palsy. For me this means that I am a full-time wheelchair user, unable to walk as well as a milder impact on my arms and hands. I have been a Cerebral Palsy Scotland service user for nearly 18 years.

I am currently a third year student studying Business Management at Glasgow Caledonian University. This Cerebral Palsy Awareness Month I thought it was important for me to share what my university experience with cerebral palsy has been like so far, both the good and the bad.

There are a lot of worries that come with starting university and living with CP. My main worries were wheelchair access, space in lecture and seminar halls, fire exits and the location of toilets, and support arrangements.

I love the university experience overall! I really enjoy lectures because they allow you to gain the basic knowledge around a broad topic, which then allows me to carry out my own research to gain a deeper understanding of the topic I have a specific interest in or that will benefit me in my future coursework as well as my career.

I enjoy seminars because they have, and still do allow me to meet new friends as well as learning about different points of view on a certain topic through having really interesting conversations with people from all walks of life.

If I am being totally honest, I was very anxious about starting university which is totally normal for anyone but not least for someone with cerebral palsy with all the extra worries that it comes with. Certainly, part of the reason for my worry about starting was about support. At school I was used to one-to-one support which was fully organised for me with no say from me. A lot of people will view that as a negative which I also did at the time by the way! However, I was yet to realise how difficult it can be to find a personal assistant (PA) that could meet my needs as well as both of us getting along really well.

At university you have a disability advisor who supports you with recruiting someone to support you along with completing the application for funding for your PAs and any equipment needed. They also liaise with the funding body if there are any additional items needed.

One of the main difficulties in my experience of finding a PA is that most PAs are either self-employed or employed by an agency. Why can this be a problem you may ask? It can be hard because of their employment status – they have the opportunity to pick exactly what ‘shifts’ they would like to do meaning if there is a ‘shift’ they don’t want to work they have no obligation to! This can mean needing more than one PA may be much more likely, to be able to make sure that all your university timetable can be covered.

Another difficulty is the university timetable itself. This is because every trimester when you are given a new timetable there is not much advance notice of the timetable before the new term begins. This is difficult because it means both me and my PAs have no ability to plan our lives as I can’t give them advance notice of the hours I require them to work. This may mean that I lose out because my PAs have already booked other work as they are self-employed and need to make sure they have enough work to maintain a good income. If this happens, I have to use an agency to find a PA who is able to support me at university. This may sound scary, but I have found a reliable agency who have always supported me to the best of their ability. It’s not as scary as you think, if you are at university and need to use an agency. To find support my advice would be to use one which is well known as having a large number of staff because this will mean it is more likely that they will have a member of staff who is able to meet your needs and who you get along well with. If you don’t get on with someone don’t feel pressure to keep working with them. Let the agency know and they will help you to find someone more suited to you.

Although it may seem that my university experience has been mostly negative that is definitely not the case! There are, and have been, lots of positives. One of the main positives is that I have found two amazing PAs who I get on with so well and who have made a positive difference to my whole university experience! Another positive is that my PAs allow me to be more independent and experience things I would not have been able to without them. And my final positive that I feel I need to share with you comes from my university experience is the friends that I have made. I have made friends for life! Its amazing to have great friends who have the same passion as you.

Even though there have been negatives with my university journey overall university has been both a positive and exciting experience! So go ahead and don’t be put off by thinking it will be difficult because you happen to have a disability.

What would make the move to university easier for disabled students would be a proper transition programme to allow the items I have mentioned to be sorted/explored before university begins. This would make the move much more enjoyable and increase the excitement to going to university.

I hope this article helps you realise that you can attend and enjoy university with cerebral palsy.

How I use Exercise as an Alternative to Physiotherapy – Mark Brown

Hi, my name is Mark, I am 53 years old, striving through life with Cerebral Palsy (CP).  My CP affects all parts of my body with my left arm mostly affected with involuntary movements; additionally, it impacts on my dexterity, coordination and balance.  I walk independently although I do require a build-up on my right shoe.

From my childhood I have always been physically active enjoying trying to play football and games like Hide ’n’ Seek or Tig, with my peers at school and in the local community.  When I was about 9 years old, I finally mastered riding a two-wheeler bike. From then on, I loved my bike and would cycle everywhere.   As I was growing up, right through to mid-secondary school, I had regular physiotherapy, and my parents also encouraged me to do my exercises.

Fast forward 25 years or so, during which time I was at college, university and in employment.  Every so often I would tap into physiotherapy and try to stay as active as possible.  As shown here, I have always viewed physical activity as an important way of staying well and active.

In my 40’s I started to notice some changes in my Cerebral Palsy such as pain, increasing involuntary movements and getting slower at doing everything.  This led to me having to leave employment in 2017.

I have since focused on maintaining my strength, balance and coordination through attending the Glasgow Club at Bellahouston gym, and Palace of Arts.

Pilates

Following attending physiotherapy, I started attending a Pilates class which was recommended by the physio.  I attended a class weekly up until Covid struck.  Following Covid, I resumed attending Pilates on a Tuesday, with an instructor called Sylvia. I explained to Sylvia that I have CP, how it affects me and that I am fully aware of my limitations, therefore she need not be concerned about me injuring myself and I don’t require any extra guidance of support. Through time we have developed a good understanding and respect. Pilates has greatly benefitted me since it works all areas of the body helping stretch my muscles and build strength.  Like anyone attending the class, there are some exercises that are more difficult than others. What I do in this situation is adapt the exercise into something that I can do, or Sylvia will give me a hint.  Most of the time Sylvia gives the class different variations of the exercise since everyone attending the class is all at different levels.  The pace of the class suits me, however, if I need a short break I will take it.

Yoga

The Pilates class moved to a 09.15 start during the winter, so I asked Sylvia if I could try the Yoga Class, which she takes following the Pilates class. During winter I feel the later time is more manageable.  We agreed, so since November I have attended Yoga.  I find the Yoga a lot more challenging than Pilates.  Yoga focuses more on balance and strength.  As my balance presents me with challenges, I find the Yoga tougher than Pilates.  With some of the exercises I need to be more creative in adapting to something that’s achievable for me.  For example, I will balance on one knee while others are standing on one leg, yet I still wobble. During this class, I do take a few more breaks as the exercises work my balance and concertation more, but overall, it’s an achievable class. Both Sylvia and I have noticed improvements.

Core Stability

Due to my CP, the physiotherapist at Cerebral Palsy Scotland advised me that I have a weak core, and this was backed up by the Consultant I see at the NRU.  I looked up the classes at the Glasgow Club and found a class called Core Stability.  I discussed this with my GP, with whom I have a positive relationship.  She thought the class would be at a good level for myself, as it will challenge me.  I elected for a class at lunchtime on a Saturday and spoke with Viv the instructor; providing the relevant information about my CP and that my GP agreed that it was an appropriate class to try.  I started the class in June and have been attending since.  I do find the class hard – but very rewarding.  The class works all aspects of the body focusing on strengthening the core. In particular, it works the back and the legs hard.   The exercises include things like squats, sit-ups, planks and many more. The tempo of this class is fast, but as before I go at my own pace.  Basically, I do all the exercises but not the number of repetitions as the instructor aims for due to it taking me longer to reposition myself.  Like the other classes, there are some exercises which I need to adapt myself or with some instruction from Viv.  Due to the intensity of the class, I do need to take some breaks.   Along with Viv, I have noticed improvements in my abilities over the last 9 month.  At the end of the class I always feel a great sense of achievement.

Gym

Presently I attend the Gym weekly, normally after yoga.  I use the gym equipment to build my upper and lower body strength.  I do at times find this a bit boring and repetitive compared with the classes I attend.   I do keep going as its important to use weights to retain and possibly build my arms, core, and leg muscles.

Benefits I get from Exercise

Regular exercise has bought the following benefits:

  • I am now able to sit on floor with straight legs without support
  • Slightly improved posture
  • Stronger core
  • Improved balance
  • Sense of accomplishment
  • Better mental health: exercise helps improve mood
  • Better sleep quality
  • Reduced pain in some areas

Considerations when looking for Exercise

It is important to know what you want to achieve from exercise.  As a starting point see if your GP, or other health professional, can refer you to your local gym.  Gyms that are operated/funded by Local Authorities will have some form of special advisor who can guide you.  I would urge you to consider the following:

  • Your physical abilities
  • Your ability to follow and memorise instructions
  • What activities you enjoy

 

To benefit from exercise, it is important that you find something that is achievable yet challenging for you.  For example, an instructor covering the Core Stability asked if I fancied trying their HIIT class, yet I knew after 5 minutes it was not for me (although I did stay for the duration.)    At the end I explained to the instructor that the constant use of a Step was too difficult for me, and I felt I would risk falling, plus the intensity of the class was very high.  So be aware of and accept your limitations.

 

The Future

As I grow older with CP, and the additional unknown challenges that will occur, I aim to remain as physically active as possible.  I enjoy all the classes that I participate in currently.  During the summer months I am likely to go back to the Pilates opposed to Yoga and keep the Core Stability going.  In an ideal world I would attend all three classes(!) however, Pilates and Yoga are in high demand.  Although I find the gym a bit boring, I will keep going due to the benefits from attending.  I am also open to trying new classes if anyone has any suggestions?  I would like to thank Sylvia & Viv for giving me the opportunity to participate in exercise classes which challenge me but bring great benefits in managing my Cerebral Palsy.

Cerebral palsy doesn’t hold me back

Every March is Cerebral Palsy Awareness Month. This is my disability, but it doesn’t hold me back.

Cerebral palsy affects many people in the UK and is more common than people realise, around 2-2.5 in every 1000 children in the UK are born with cerebral palsy, there are an estimated 30,000 children with cerebral palsy in the UK.

This month aims to bring together people, their families, carers and organisations from over 100 countries, this is a lifelong neurological condition that affects a person to ability to control their movement, posture and balance.

No two people experience the condition in the same way – for me it’s just a label, as we’re all individuals, I refuse to let people tell me what I should do with my life, some people call that determination.

Looking back to school, I had to learn how to walk and attended speech therapy, people who know me best still say to this day I’ve never shut up. I went to a disabled school in Glasgow, or what is known as a special needs primary then high school, but what it special about a school? When I finished I went to Motherwell College, but I was allocated to a basic life skills course. It wasn’t my choice, I wasn’t asked what course I’d like to do, so I pushed to get on a business course and won a place.

My dream was to work in the media. I recall people at the time saying to me, “what about a shop job?”, but not one said “yes media sounds good.” However it was my life, so I joined Hospital Radio when I was 18. I recommend it, if anyone wants a career in the media, that’s the best place to start. Many famous Scots media celebrities have started here, such as Tom Russell and Ken Bruce.

I was there for 8 years, I asked if I could do a sports round up on the station, then I moved onto a few community radio stations. I hosted my own show, interviewing different people gave me a good start. Forward till today, I’m now a freelance journalist, worked for BBC on TV , Radio, STV and various newspapers outlets, some acting work too.

I think I’ve achieved a lot, my best advice would be if someone said no you can’t, that should make you more determined to prove them wrong. I would say never give up on your goals, if you believe you can, just do it, you may need some support to get there but that’s fine, we all need that sometimes.