Regular therapy can help you avoid the need for surgery
“I was blessed with incredible parents. They found creative ways to help me become independent.”
I am 44 years old and was born with cerebral palsy due to a lack of oxygen during birth. The damage caused to my brain is on the right hand side, which means that I have paralysis and restricted movement on my left side, it is known as left hemiplegia. I regard myself as being extremely lucky in that I can walk, talk, communicate and understand the environment I'm in.
When I was born there was very limited information and support in relation to CP, I can only imagine how upsetting it must have been for my parents. They were very much alone and didn't know how active or mobile I would be. I attended Yorkhill hospital during my childhood. The visits and treatment offered clinical diagnosis but no practical living skills, and when I no longer qualified to attend Yorkhill the help ended.
I have been blessed with the most incredible parents. They have done an outstanding job in supporting me to lead a full and fun life. From an early age they were creative and innovative in helping me to become as independent as possible. Even before exercise bicycles were created my dad had jammed the wheels on my bike to enable me to use my bike in the house to build strength in my leg. He adapted the lyrics in the Searchers song ‘Don't throw your love away’ to ‘Don't throw your leg away’ to encourage me to walk in a way that stopped me from tripping. I could go on, my parents’ influence has been paramount to my current lifestyle.
I attended a village primary school; I very much enjoyed my time there and was supported by friends especially when I required extra help after surgeries.
When I moved on to high school life wasn't so easy. The building was large and I found it quite difficult to get around. The pupils weren't all as friendly either and I experienced a lot of name calling, but my village friends stood by me. When it came to considering what to do after leaving school I was advised by teachers and guidance staff that working part time in a shop would be a good option. I felt disappointed as I thought I had more to offer.
Choosing a career
I had a lucky break, my parents had a small family business and their accountant came to visit. I was interested in what she was doing and also liked her fancy sports car, her high heels and her pinstriped suit and thought I might like all of that too. I told my parents of my intention and they supported me all the way, arranging for extra tuition, and I left school with 5 Highers. Just before leaving school I learned to drive, again with my dad's help and creativity in adapting the car. This is by far the most useful exam I have passed as it gave me my independence.
Life after school
Leaving school was daunting as I was unsure how I would get around in an unfamiliar environment without the support of my friends. Attending university full time concerned me, I was fortunate to be offered a trainee accountants post in Milngavie. One of my colleagues helped me learn to swim and another introduced me to Glasgow Riding for the Disabled association where I have been riding for the last 25 years. I worked there for 7 years and became part qualified before moving on to work for the NHS.
Starting a family
During this time I met and married my husband Tom. He has also been an amazing support to me, helps me when he can, but also tries to put things in place that allow me to do what I can for myself.
The year after we were married I became pregnant; we were absolutely delighted as we had been unsure if my condition and the drugs I had taken would have an impact on my ability to conceive.
Jenna isn't just my daughter, she is my friend too, her encouragement, support and love are indescribable and I am very proud to be her mum. When Jenna was young I struggled to cope with lifting and caring for a new baby, I will never forget the help and support I got from family and friends especially my mum at this time. During my maternity leave I decided to complete my accountancy exams and became a fully qualified chartered certified accountant. This was a major achievement for me and although I have the pinstriped suits, the sports car and high heels haven’t worked out. Sports cars are over rated anyway in our West of Scotland climate!
I now work for Audit Scotland and have responsibility for a combined revenue budget of £500m.
Therapy v surgery
I became aware of the adult services offered by Bobath and went for an assessment - excited but apprehensive. At 43 years of age I hadn't had any specialist input on CP until that day. I was struggling at the time with stiff and painful joints and muscle contractions in my left arm, and thought the only way forward was painful surgery with a long recovery period.
During the assessment I learned lots about my CP and why things didn’t work the way they should.
I discussed my goals with Kirsteen the therapist and put my posture top of the list. Learning that my left leg is longer than my right leg was news to me too - I had been wearing the heel block in the wrong shoe! I remember the day clearly as it was the day that my lonely journey with cerebral palsy ended; I had a lifeline and support network in helping me to manage my condition.
During my first block of therapy Kirsteen developed a programme that improved my muscle tone and tightness, which has significantly reduced the need for surgical intervention. A fantastic result as I would much rather avoid surgery.
My next block of therapy was based more on practical life skills. Coping with stairs and busy places especially on uneven surfaces is particularly challenging for me. Kirsteen has given me solutions so I can feel more in control facing these situations. She also arranged for me to see an orthotist to provide a splint for my elbow as the contractions and painful spasms could result in loss of use over an extended period. The splint provided was less than suitable, it was heavy, cumbersome and required assistance from two people to fit it.
When I showed it to Kirsteen her frustration was clear. She asked Sandra the occupational therapist to get her electric frying pan out. I was a bit worried as I had no idea what she was going to do with it! Sandra melted a piece of plastic, which she moulded into the shape of my elbow and created a splint that is both practical and comfortable. It will also help to avoid the need for future surgery.
Therapy packages are creative, fulfilling, fun and very satisfying. The focus is on ability and not disability; it’s what you can do that matters.
My advice to anyone with Cerebral Palsy is to quote my favourite proverb:
“Don’t be pushed by your problems, be led by your dreams.”