Cerebral Palsy Scotland

Having Cerebral Palsy by Marion Burns

 

At Cerebral Palsy Scotland, we share the voices and stories of people in the cerebral palsy community. Marion’s words show determination and positivity, and that while life with cerebral palsy may come with difficulties, it is still full of movement, connection, and moments of joy.

Here are Marion’s thoughts on:

 

Having Cerebral Palsy

 

Having cerebral palsy means I have many difficulties.

For some people like myself, getting understood is a big one.

But, although I have many challenges,

I like to see the positive outcomes.

 

Having cerebral palsy means I’m in a wheelchair.

But, that doesn’t stop me dancing around on the dance floor.

I even enjoy whizzing along in the air,

and letting my hair down on a zip coaster.

 

Having cerebral palsy means I need therapy,

to keep me fit and active.

I enjoy cycling, that keeps my legs moving.

So you see, I can still do all the things I love.

 

Having cerebral palsy means I am on my own a lot.

But, keeping up to date with friends on social media,

Bowling, lunch dates, walks.

Means plenty of fun times too.

 

Written by Marion Burns

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.

My experience of cerebral palsy and clubfoot – Christina MacLean

This is my second year taking part in Cerebral Palsy Awareness month. Reflecting on my experiences from last year, I have noticed a shift in how people perceive and understand the challenges faced by individuals with Cerebral Palsy and conditions like talipes equinovarus (also known as clubfoot). I was diagnosed with congenital Cerebral Palsy and born with club foot, both of which have had a major impact on my life.

From a young age, I have worn orthotics to support my feet and help with walking, my left foot is a size 6 and my right foot a size 4. These have been an essential part of my everyday life, providing stability and alignment needed to move more easily. Over time, wearing orthotics became a routine, but it wasn’t without its challenges. They were uncomfortable at times and often drew attention from others. People would sometimes stare at my feet or make negative comments. I have been called a “freak”, “disgusting” and “weird”.

Shopping for shoes has always been one of my worst nightmares, especially since I need to buy two pairs to accommodate both feet. When trying on shoes, I have often encountered employees who act surprised and will even call on other employees to share their disbelief. This lack of understanding makes the experience feel even more uncomfortable. At times, I cannot help but wonder if I am being judged or treated differently for something that’s entirely beyond my control.

Over the years, though, I have learned to handle these moments with more confidence. While I still feel the sting of negative comments, I have come to realise that their lack of understanding does not define me. As I continue to raise awareness, I hope that these experiences become less common, and people begin to approach these situations with more understanding and empathy. One day, I would love for shoe shops to be more inclusive, where I could buy both sizes I need as a pair – making the shopping experience easier and more comfortable for everyone.

Caribbean (Lazy) Adventure – Mark Brown

Mark and Gemma sharing their experience of their 10th anniversary cruise travelling as a couple with cerebral palsy. 

As it was our 10th anniversary, we decided to have a unique break and went for a two-week cruise.  This was our 3rd cruise, but the first outside of Europe.  The Cruise was around the Caribbean with Marrella Cruises booked through TUI.

We both have Cerebral Palsy.  My CP affects me all over but mostly my upper body co-ordination.  Whereas Gemma’s CP mostly affects her walking and balance.

Glasgow Airport

Our journey to the airport was easy: A Glasgow Taxis’ cab picked us up at the scheduled time of 06.15, to give us plenty of time at the airport. It took us straight to the drop off point at the airport where the driver put our luggage on a trolley.  It was fun pushing the luggage trolley first- and helping Gemma with the slight inclines to reach the Terminal. Checked-in at Passenger Assistance who assisted us to check-in our luggage.  After this, as we had about 3.5 hours before boarding, we were happy to proceed through Security ourselves.  I remembered that last year Passenger Assistance had given us a VIP pass for security, so I asked and was duly given the same. They also confirmed that an assistant would meet us at the gate to assist with boarding. We got through security easily, so decided to look for some duty-free shopping, which was made easy as there were plenty of sales assistants.  Following this we headed for a Champagne Breakfast at the Caledonia Bar. The breakfast was good; the only downside was you must find a table and then order and pay at the bar; however, it is then brought to your table.   Following breakfast we headed to the gate.  At the gate Passenger Assistance was there waiting for us and when we were called to board, they assisted us down to the plane.  Once on board the cabin crew kindly took our hand luggage and ensured we got to our seats; they then put our luggage and Gemma’s sticks in the above storage space.

The Flight

The flight was to Jamacia; a country with happy memories as we got married there in 2014.  The flight took about 9 hours yet seemed quick.   We got the seats together that were allocated when we booked so I had a window seat as it gives me more space for my left arm to move around freely, as usual when we fly, Gemma was in the middle.  As we were closer to the front, we were told that we could use the toilet in the Premium area.  The flight was comfortable yet, typically, the plane hit turbulence when we headed to the toilet and to stretch our legs.  Gemma was the unfortunate one because the Fasten Seat Belt sign came on while she was using the toilet, Gemma “did a Gemma!!” – she thought she was meant to remain there until the Fasten Seat Belt sign went off.  After me chapping the door, she eventually came out and we made it safely back to our seats.  My only gripe was the earphones supplied are too small and awkward to get into my ears for watching movies etc.  Luckily, I had my own music downloaded on my phone along with my kindle to read.  Lesson, take own plug-in earphones or book premium seats as they got proper overhead earphones and more legroom.

Arrival

The flight was a bit later landing than scheduled, once all the passengers were finally off the flight, we made our way to the exit with cabin crew assisting with our hand luggage. Passenger Assistance was waiting for us with Gemma’s own chair, and I had to walk just a short distance, then a wheelchair was available for me.  We were quickly whisked to a side exit with our passports briefly checked before we were taken to the waiting taxi.

The taxi was “a joy ride sandwiched between 2 coaches,” with a police escort as well as another motorbike without a siren since the delay earlier put us in danger of missing the ship’s boarding time.  We mazed in and out of traffic like the dodgems with horns blowing everywhere. My bugbear was that at the port we had to fill in the same visa entrance forms, which I had completed online.   But we made it on time.

The Cruise Ship

The ship was called Marella Explorer 2 which set sail on 30 January 2024 and returned on 13 February 2024.  The cruise was for adults only. Our cabin was an accessible one on deck 5.  The cabin was larger than the standard size cabin, with a walk-in shower.  There was plenty of storage space for clothing etc.  The bed was low down and reasonably comfortable, it was likely two queen size beds put together; there was also a third bed which could be pulled down, which is probably ideal if you are travelling as a family, or with a Carer. Our luggage was brought directly to the cabin.  On deck 5 we were handy for accessing the Reception and Destination Services Desks.  Before the ship’s departure we had to watch a safety video and report to the Muster Station.

As we had paid extra to have the Premium All-inclusive Package, we got a 1l bottle of water delivered to the cabin every day, which was handy for taking our medications.  In addition, the Premium All-inclusive Package gave us access to a wider range of alcoholic drinks, soft drinks in cans and coffee at the Coffee Port.

The ship was easily accessible with plenty of lifts available.  Our cabin was very central and had access to lifts on both sides of the cabin.  The lifts only went to deck 12, so we were unable to access deck 13 and 14 as they were only reachable via stairs. The doors for assessing all public toilets including accessible toilet were very heavy.  All the accessible toilets were a good size, I would assume they would easily accommodate a powerchair.

As we were on a celebratory cruise, I had arranged a wee surprise in the cabin for Gemma, Champagne and Chocolate.  (Yes, I am a Romantic at Heart!!).  We enjoyed a wee glass before navigating our way to the Latitude 53 Restaurant for dinner.  Then back to the Cabin for some more champagne and chocolates before settling for the night after around 24 hours on the Go!!.

Restaurants 

There were 3 restaurants for eating in: the Buffet Restaurant on Deck 11, which was available for Breakfast, Lunch and Dinner.  We found this restaurant okay, but as neither of us could carry plates and select food, we had to always find someone to assist.  Sometimes it took a bit of time to locate staff to assist, some of whom then sought permission before assisting us, (perhaps in future it may be worth mentioning we require assistance in the buffet restaurant when booking).  They mostly provided us with large portions.  We tended to use this restaurant for Breakfast and Lunch; we did have dinner there twice, when the Dress to Impress nights were on as it was quieter.  Latitude 53 was a waiter service restaurant for breakfast, lunch and dinner, which we used several times for different meals.  Latitude 53 offered a 3-course lunch and dinner.   The Vista Italian restaurant was available at night, offering set 3 course menu.  Both Latitude53 and Vista are located on deck 5., Which you would think brilliant as we are on deck 5.  Not so, as they were at the other end of the ship to the cabin, and the only way to access them was by going up to deck 6, then descending to deck 5 again! (It drove Gemma crazy!) In addition, there was Nonna’s pasta and pizza bar available throughout the day which we visited on a few occasions for lunch.

There were some Premium Restaurants available at night for a supplementary charge. We paid one visit to Beach Cove, which provided burgers and skewers, also desserts. it was something completely different for us, but we did enjoy our meal.  Kora La provided Authentic Asian 3-Course meals, where we enjoyed a couple of nice curries here; one each week.  Surf and Turf was surprisingly our favourite restaurant, so we visited it on 3 occasions: the Tuna Steaks were delish!!

 

Entertainment and Relaxation

The bars we visited while aboard was Squid and Anchor, which provided a variety of Entertainment from Quizzes through to Karaoke and Live Music. Indigo, which was the nightclub and had Live Music and DJ Set. Flutes Champagne and Cocktail Bar, which often had a pianist or a singer performing.  Getting drinks was generally easy as they all had waiter service, although sometimes you were waiting a while.  It was possible to go to the bar and order a drink.

Decks 11 and 12 had sun loungers and waiter service bars.  Most days it was difficult to get sun loungers here since generally we were not organised to go poolside before 10am.  Annoyingly, there were lots of loungers with only people’s belongings. Deck 11 and 12, where the daytime entertainment took place, could be noisy at times.  Sun loungers were available on deck 6, where it was quiet and good for sitting reading our kindles. The downside was there were no bars or waiters, so you had to bring your own drinks.

Coffee Time, it definitely was!! As we visited the Coffee Port on deck 7, most mornings and afternoons, for our coffee. I mostly enjoyed Lattes and Gemma Cappuccinos without chocolate of course!! We were so well known the waiting staff literally knew or order and stopped asking for our cabin number.  We spent a lot of time here especially on sea days when it was too choppy or windy to sit on deck.  We found it a good place to relax and read.  The coffee was served in decent size mugs, but they had very small handles so I would ask the waiters to decant it into my own travel mug.  There was a range of chocolates, cookies and brownies available at a supplementary charge.  We did enjoy the odd bar of chocolate which was very nice.   For my birthday cake I had a raspberry brownie.

Holiday Highlights

Columbia

Our first trip was to Cartagena, for some Coffee & Rum Tasting. We visited a Traditional Coffee House.  We were given a brief history of Coffee and Colombia; from this the coffee making process was explained from coffee bean picking right through to brewing. We got to taste coffee at the different brewing processes.  Some of them in the early process were very bitter, however the taste improved as they went through the process.  Next was the highlight of the tour for me Rum Tasting. Here we got to taste 3 different rums all at different maturity years.

Following our tasting session – as we were still Sober!!  We visited Santo Domingo Square.  In the square there is a Statue of Simon Boliver, who led the campaign to make Colombia a Republic.  Our tour guide was very informative overloading us with information on the history of Cartagena.

We visited was the Walled City of Cartagena.  The roads and pavements were uneven and some of the kerbs were about 2ft high.  At one point some of our fellow tourist on the tour had to help me lift Gemma down a 2ft high kerb.  I was glad to be pushing Gemma as it kept me steady but was a bumpy ride for Gemma.  During our free 45 Minutes we ended up remain at Santo Domingo Square as it was difficult to find accessible kerb.  This provided an opportunity to sample some of the local culture and purchase some small items from street Sellers. During the visit to Cartagena, we did see a lot of poverty amongst people with disabilities; there mobility aids looked very old and dated.  There was also lost of people with disabilities begging.

Costa Rica

Time for some Chocolate! as we done a Chocolate and Tortuguero River Trip.  We learned about the Chocolate Plantations and the importance of these to the Costa Rican Economy.  We sampled Coco beans at the different stages of production.  An interesting fact is that Mosquito’s play and important role the trees that grow the coco beans.  We even got to taste some chocolate.  Follow this we done a Safari type boat trip on the Tortuguero River where we seen everything from Banana Trees to Sloth’s.  The boat trip lasted about 90 minutes offering plenty of photo opportunities.  I managed to capture some monkey!! I think as I am not the best photographer. The trip was easily access and Gemma did not require her chair as the coach parked close to the venue.  To access the boat there was a short steep incline with a few steps onto the boat, we found it manageable.  Upon returning to the port, we visited a small tourist Market, picking up some souvenirs.  We then took our time wondering back to the ship and some of the port security even offered to push Gemma, which we politely declined but did ask them to take pictures of us.

Cuba

We spent approximately 1 days in Cuba. On the half day wee took ourselves off the ship and had a walk around Havana, with me pushing Gemma.  We wondered through the narrow uneven until we arrived at what we learned was the Capital Hill building.  This building is based on the White House in Washington, expect its bigger.   We also seen the National Ballet House.

The pavements outside the State Buildings are very smooth and modern.  However, walking around the streets of Havana they are mostly uneven cobblestones with High Kerbs.  The roads were busy too, so walking on them felt unsafe.  At one point Gemma had to come out her chair and climb on to the pavement followed by me lifting the chair.  Overall, we spent around 2 hours slowly going around Havana.

Day 2 in Havana was the highlight of the trips for me as I fulfilled a lifetime ambition when we took a Classic Car Tour of Havana. The Classic Car we toured in was a Ford 1928.  The colour and design seemed tailor made, as it almost resembled the St Andrews Flag.  We had a very enthusiastic lad driver called Eleanor. Eleanor was well respected amongst the other drivers as about 20 Classic Cars toured around Havana.  The cars were constantly racing each other, tooting their horns and weaving through traffic.  Eleanor was fantastic at giving us a running commentary as we drove around.

We stopped at Independence Square. I got out the car to do the tour around the square; Gemma decided to remain in the car and sit in the shade, (plus we observed the height of the Kerbs!!!).  The Square was surround with official Government buildings including the Army Head Quarters.

Our final stop was at Cuba’s famous Hotel Nacional de Cuba.  Here we got a brief of the hotel.  Unfortunately, we missed the start of the tour as we were shown to an accessible entrance.  The tour ended with a Mojito and a Peacock. Before heading back to the car and returning to the port.  Following the tour which lasted just over 2 hours, we had a further walk around Havana picking up some souvenirs.

The Spa

While on holiday, Gemma and I enjoy getting messages. Oceans Spa is on deck 11.  We had planned to have two treatments but decided to have an extra one as we did not get a trip to the Panama Canal.  Our first massage was a Swedish Massage which I felt was a bit disappointing. Gemma was happy with the massages that she received.  Our second massages which was a deep tissue with different therapist.  Rosmary who gave me the treatment did not hold back a dug deeply into my tight muscles, she was very reassuring and kept asking if I was ok, but I was so relaxed and felt at ease. Simply, it was the best treatment I have ever had.  I told Rosmary this as afterwards my arms were relaxed along with my legs, and I felt like I was walking on air.   Fortunately for our final treatment on our Anniversary we got the same therapist with the same results.

Horizons

Through the years Gemma and I have had many trips aboard, which started in Egypt, including a trip to the Holy Land in 24 hours, and the real beginning of our adventure with a Proposal.  We have also visited Fuerteventura, Cyprus, Mexico, Rhodes, 2 Mediterranean Cruises and of course Jamacia in 2014 to get married.  With each holiday we have learnt something new about travel.  As we get older, our Cerebral Palsy is becoming more challenging meaning we must think more about accessibility.  We are determined to continue travelling and are planning our next adventure, which is likely to be around Xmas 2025.   We hope you have enjoyed the blog.

Written and Designed by Mark Brown, Proofreader Gemma Brown

What I want people to know about cerebral palsy – Rebecca McIntosh

As part of Cerebral Palsy Awareness Month, Rebecca shares what she wants people to know about cerebral palsy.

I wasn’t diagnosed with having Cerebral Palsy until I was 2yrs old, the doctors told my mum and dad I would never be intelligent enough to go to school because I wouldn’t understand words.

Forty years later, I was so nervous and excited sitting waiting for my name to be called out, I kept pinching myself to make sure it was really happening.

I heard my name being called all I could think of was not tripping on my gown, everyone was cheering I was finally holding my PG Dip in my hand.   This was the result of 3yrs hard work at university a milestone in my life the day I went from being a student with CP to a professional Counsellor/Psychotherapist my Graduation Day.

10 yrs on I am highly experienced practitioner I volunteer at Cancer Support Scotland as a counsellor, and I have a small private practice where I counsel people with disabilities like me.

I have achieved so much in my life despite of the challenges of having cerebral palsy brings these have been all physical absolutely nothing to do with intelligence, I started a mainstream school when I was 4yrs old, Passed all my exams at secondary school and college and then worked as an information worker, before changing careers and going to university.

So my doctors and specialists got it wrong just like many others do,  I want to shout it loud and clear that people with cerebral palsy are INTELLIGENT.