Cerebral Palsy Scotland

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.

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

Barry: Respite care and holidays

Respite care and holidays

Hello, it is Baz Smith here again with a blog and I am going tell you about two holiday centres which are run for disabled people. The centres I am talking about have 24 hours care for people who need it.

The first one I am going to talk about have four centres in England. The nearest one to Scotland is in Southport and it is call Sandpipers. I went there about six weeks before the first lockdown started, thank god I was back up the road before the UK told everyone Stay at home in March last year. The centre has Nurses and Careers all around the clock to meet the needs of disabled people. It has a bar for anyone who likes a drink. The centre looks onto the sea, which looks nice when the sun goes down at night. As well it has an indoor swimming pool. I knew before COVID19 you just need ask a member of staff and they would get it planned for you to go in with Volunteers to watch you when swimming.

You would get three meals a day. Breakfast is cooked for people who want it, or you can have a cold Breakfast. If you need help to eat or your food cut up someone will help you. When eating your breakfast have a look at the Dinner (Tea) menu and if nothing you like was on it, please tell a member of staff and they will let the cook know and they will come and ask what you want to eat.

Before COVID-19 they did bus run to get people out, but I do not know about now. Most days the Bus runs to visit some places liked the shops in different towns. If you want go you can go to four places a week. A member of staff would come around on a Monday and tell them what trips are on for that week, and the person picks. Then when everyone has picked the staff tell everybody when they are going out and who will be going with them to meet their support need. On the day you are out you are given a packed lurch before you go on the bus. All their buses have lift for wheelchair, or if you are not good on your feet.

You might be asking yourself now can I get there from Scotland, if you get the train down you need to change at Waling then walk about 5 minutes’ walk. If you are in wheelchair you must book Trains and Ramps. When you get to Southport you get cab up to Sandpipers or walk up, which would take about 30 minute. You will pass by the smallest pub in England but it doesn’t have any Wheelchair access.

In every bedroom there is your own Tv and en-suite toilet with hand rail and a wheelchair access Shower and Shower Chair if needed, as well over head Hoist and the beds can move up and down. There is an on call button. The night staff can do night check if for anyone who needs it.

If you do not want to go Sandpipers, they have three more Centres around England, to find more about them please visit https://revitalise.org.uk/

The next Holiday place I am going tell you about is Calvert Kielder.

You can go there with your family or friends. Or, if you are over age of 18 you can go on respite and let their Staff take care of you.

At Calvert Kielder they have got a respite team for any disabled person over the age of 18 who wants go on holiday by themselves and get their support needs met by the team at Kielder, like washing, bathing, dressing and feeding. When booking you tell them your needs so the staff know how to support you on your holiday.

If you are a part of the respite team, the staff will make a support plan up with you, so all your needs will get met. You will stay in main centre where the carers are on around the clock. If you are on respite team you get three meals a days and a programme of things do is setup. for liked going a Buggy and water sports no matter which age you are.

Family who have someone with a disability can go and stay in a little house and ask if they can take part in things to do. It has a swimming pool and a hot room to. Some schools go because it is an outdoor holiday. If you need help to get there they would pick you up anywhere within 50 miles for a small cost, they have wheelchairs and all the aids you could think of.