Cerebral Palsy Scotland

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.

My life as an ambulatory wheelchair user – Mhairi McKendrick

As part of Cerebral Palsy Awareness Month, Mhairi shares her story of being an ambulatory wheelchair user and the stigma that she has faced.

My name is Mhairi McKendrick and I have been living with cerebral palsy for 23 years now. As it is Cerebral Palsy Awareness Month, I thought I would share my thoughts on the stigma and misconceptions around being an ambulatory wheelchair user. If you don’t already know the definition of an ambulatory wheelchair user is, from my understanding it is: Someone who can walk but cannot walk for long distances or needs support to do so.

When most people meet me, I am in my wheelchair, because I meet most new people in my life at college. This definitely changes their view of me as a member of the class, they don’t involve me as much as the other people in my class, I should mention that I am the only person in my class that uses walking aids or use a wheelchair. It could just be a personality clash, but I’m not so sure. It doesn’t help that I am quite introverted when in my everyday life.

The way they treat me just shows that the stigma of fear of the unknown is still rampant in today’s society. It kind of annoys me because I have done nothing to my knowledge to make them feel weird around me. Like when I drop something when I am sitting in my wheelchair, sometimes I can pick up the item by getting out of my wheelchair but most of the time I have very little to no energy to do this. When this happens I have to ask my classmates for help and I cannot help but think that they’re thinking ‘Why does she need help?? she can walk!’ but they never ask me why I need the help.

From family testimonials, I know that it took me until I was 3 years old to walk unaided for 100 meters. This was a massive relief for my parents and a big raspberry to the face for the doctor that told them I would probably never walk or talk independently. As you now know I can do both of those things. One of the biggest blessings that has helped me maintain my stamina during my childhood specifically week-long physio that I had access to from the age of 2 till I finished high school. Without them I would not have kept the amount of stamina that I have.

Throughout the pandemic and even then, I have definitely lost a lot of it through not having the motivation or opportunity to walk during that time. The biggest stigma I have faced as a part time wheelchair user is something I touched on earlier- the confusion over why some ambulatory people need wheelchairs. For me its 2 factors: pain and energy levels.

Sitting here and writing this article: my ankles ache, my lower back is throbbing and I think that if I try to stand up I may just fall over or severely stumble over my own feet. It could be a whole other reason that someone who can walk makes use of a wheelchair. It is up to us as a society to normalise every version of wheelchair using there is. Not all wheelchair users are paralysed. Not all people who use a wheelchair are unable to communicate.

Here are some statistics about Cerebral Palsy: 1 in 3 are unable to walk. About 40-50 percent of individuals with cerebral palsy are wheelchair users.

The energy used to move by a person with cerebral palsy is three to five times more than that of a person without cerebral palsy. I am extremely grateful for the opportunity I have had throughout my life. So that I gained the skill of walking and had access to a manual wheelchair so I could access the world.

Exploring the connection between cerebral palsy and anxiety – Guinni Baker

As part of Cerebral Palsy Awareness Month, Guinni shares her story of being an adult with cerebral palsy and experiencing anxiety. 

So I’m an adult now and cerebral palsy hits differently than it did when I was a kid. There are no regular doctors’ visits or physio sessions – no one worries about growth-spurts and leg lengths any more. I don’t get called names in the playground, (not that I’m aware of anyhow.. though I did recently find a note in a social area that read ‘Ms Baker leans and walks.’ I’m a depute head teacher in a secondary school and you bet I do, wee yin! Thanks for noticing!), I’m pretty aware of what I can and can’t do and moderate as needs be. The children in school almost instinctively swirl round me on stairwells, ensuring I always have my trusty bannister to my right and family, friends and colleagues are amazingly supportive and understanding. What I find difficult can mean that someone else takes on a little bit more and its so appreciated. So many little points of assistance in familiar spaces with familiar faces which make you feel comfortable and – I don’t know how else to say it – normal.

I wanted to talk about anxiety in this blog. It’s been a huge and, at times, pretty crippling part of my life. I had a complete breakdown around twenty years ago and had two awful years recovering from it. I didn’t even know what anxiety was at the time but I could barely function and genuinely felt I was losing my grip on life completely. Looking back now I can see that what happened then wasn’t isolated. But I had no knowledge or understanding – just fear.

I couldn’t do my hair as a teenager. It drove me crazy. I was 16 before I successful managed a ponytail and that’s still about the most I can do with it. The frustration and upset of that was out of all proportion to what I was trying to do but hours in front of the mirror and a hairbrush that got chucked across the room was not unusual.  (Shout out to my two sisters who were always happy to save the day, the mirror and my sanity lol)

I recently had an adult assessment at Cerebral Palsy Scotland and asked them about the link between cp and anxiety. Was there one? The physiotherapist said that I have to work harder to get to the baseline of daily activities and over time that can cause stresses and anxiety. This really hit home for me. I don’t like change – never have but I started to wonder if this could go some way to explaining that? Staying in familiar circumstances means I don’t need to rev so hard to get by – in familiar places and surroundings I know what to do. I don’t need to wonder if I’m going to hit a wall; get stuck; can’t do it; need help in an unfamiliar place with unfamiliar people. That’s no way to go through life though and I do fight it as much as I can. I especially hate travel – that just seems to click all my cp buttons. I like being places though so every holiday planned is a love/hate/fear three act play. Never regretted going anywhere though!

I went through the worst of it before having my children – and I’m so glad I did. Having children is such a physical endeavour – in every way – and I found a lot of it painstaking! 52 poppers to change nappy / vest / baby grow. I wouldn’t bathe either of them as babies- my husband did it until they could sit up and don’t even start me on car seats and buggies!! My son, as a baby, would instinctively roll towards my dominant hand when I went to lift him from his cot. That always made me smile.

They are both now teenagers and help me in so many ways daily. My daughter stopped me from referring to my ‘bad hand’. She said I shouldn’t talk about it that way.

So now as an adult the challenges are different. I don’t want to restrict myself because I’m scared I can’t do something immediately and comfortably. No one ever said no when I asked for help and no one should ever feel too proud to ask for help when they need it – whether it’s carrying drinks back from the bar or talking about mental health – there’s always someone who will listen and move you on a little.

In the last year I’ve tried to take far more pride in what I can do rather than focus on what I can’t. I feel more connected to my body and I try to develop that connection in the gym and on walks so I can take pride in the progress I make (feeling wee, hard muscles on my cp side following my shaky efforts in the gym gives me total joy!). So for my final blog of CP Awareness Month I’m going to leave you with my top tips:

  • Develop what you can – maintain what you can. Move as much as you can.
  • Take help when you need it – don’t avoid experience and never make a decision based on fear
  • Talk about mental health. Saying you’re feeling anxious today should be as natural as saying ‘ you’re getting cold’.
  • Get in touch with CP Scotland. Their support, warmth, knowledge and kindness is amazing
  • And finally, always carry hand gel if bannisters are a necessity for you lol