Living With Cerebral Palsy, as an oldie.

The first thing I want to say about living with Cerebral Palsy is that fundamentally, it is a pain in the backside. Now that I am a permanent wheelchair user, one area that I have to be acutely aware of is pressure points on my bottom. This may not be a highly sociable topic, but it is absolutely crucial to a sense of well-being. I have a very good new pressure cushion that, when you undo it, looks like many miniature teabags. But as you move, the pressure points change. You would think that because these teabags are quite hard, it would be extremely uncomfortable, but quite the opposite. It is much better than my originally hard gel cushion.

I digress at this point because I am not talking about Cerebral Palsy in old age. But being comfortable is absolutely essential to well-being.

I was born weighing just 2lb at birth; I could literally lay on the doctor's hand because I was so small. Doctors told my parents that I was dead and that they should come over and say goodbye to me. My mother heard a tiny squeak just like a mouse, and she called the doctors back, and they realized I was barely breathing. All hell broke loose, and I was quickly put in an oxygen tent and rushed to the premature baby unit. Where I stayed for some three months until I weighed 5lbs and was able to go home. I did not have an auspicious start to my life. In fact, when I was 18 months old, my mother was told by a doctor, “take her home, forget about her, she’ll never be any good. You’re wasting my time, your time, and everybody else's. This child is spastic.” How I hate that term of calling someone a spastic; to me, it is as derogatory as it can get. Though sadly, that was the way doctors referred to people with disabilities in the '50s, and I was born in 1950.

Specialists told my parents that I would not live beyond my teens, and it was always said in my presence. So I grew up thinking that I was going to die anytime soon. As the years went on, I realised that I had not met with their conviction. This kid was not going to leave this world too quickly. Indeed, I am now 74 years of age, still working, still writing, and still trying to change the attitudes that have been formulated in people's minds regarding Cerebral Palsy. I still have a great deal of work to do. I will not give up until I take my last breath. But I pray that won’t happen for a while yet.

Mobility as a child was virtually non-existent. My body was just like a rigid board due to Cerebral Palsy spasms. My legs were scissored, one leg over the other, and my mother tells a story of trying to put a nappy on me, which she said was like prizing my legs open as though they were a piece of wood, and to get a nappy on me was almost impossible. Obviously, my mother succeeded, and we were very grateful for cotton nappies because they could be boiled and therefore eliminate some of the risk of infection.

My mother was a great one for massage; she consistently massaged my neck, spine, arms, and legs. Gradually, I began to turn my head and look towards objects.

My mother realised that I had no sight in my left eye due to Retrolentalfibroplasia, which is a burning of the back of the eyes due to oxygen damage. This was discovered by an Australian doctor who took 14 premature babies, bandaged the eyes of 7, and left the others uncovered within the oxygen tanks. The uncovered babies became totally blind, whereas the first 7 had perfect sight—What a discovery. Now there is virtually no specialist education for the blind or indeed specialist schools. I went to one in 1966, and fortunately, due to having a good brain, I was able to learn braille, learn to play the flute, and sing like a bird. Sadly, that is not the case today; I am somewhat rusty with old age. But I still love to sing, even if it is just for me.

My life changed when I went to the Bobath Centre, now known as the National Bobath Cerebral Palsy Centre, with Nancy R. Finnie. She was a wonderful Bobath therapist who started her life in a children’s hospital, having learned about the “Bobath Approach”; she then took me with her to the Bobath Centre where I became her training module. I was fortunate that I had suddenly learned to speak at the age of 4, and mercifully, my speech was perfect. No problems with Cerebral Palsy there! How grateful I am for that. I have watched and listened to many people with Athetoid Cerebral Palsy who struggle to formulate their words, have constant movement of their head and hands, and obviously look as though they are severely affected with Cerebral Palsy. Because I was able to articulate well, doctors at the Bobath Centre wanted to hear what I had to say and see how I responded to certain tasks. I was never able to draw; that was probably due to my sight loss. But I had perfect articulation, and my mother always insisted that I spoke politely and correctly to doctors and therapists. So I was an extremely good role model. The “Bobath Approach” is one of total commitment. Parents had to agree to carry out physiotherapy for two and a half hours a day—every day. Roberta Bobath, the founder, was absolutely rigid on this point. If you were not prepared to make the commitment, then the child with a disability would not be able to stay in the system. Miss Finnie worked me incredibly hard, trying to implant normal patterns of movement. For example, there was one simple task I had to cope with, namely washing my face. This should be a simple task, taking a few seconds, but for me, it was impossible. I would take my face to the face cloth rather than bringing the cloth to my face. To begin with, I couldn’t see what the problem was, so they showed me over and over again until my brain suddenly got the idea, and I was able to perform this task successfully and the right way round. What a victory!

Everything about Cerebral Palsy is small victories, suddenly being able to move or roll onto your side and to crawl on hands and knees, all done with the Bobath planting positions of good movement, again and again. So that my brain got the message, and I was eventually able to crawl. This was my means of mobility until the age of 11 when I had a hamstring transplant on both legs, spending 6 months in plaster from thighs to toes. With a plank of wood, rather like a broom handle, between my knees, keeping my legs apart from one another. For this reason, I had to have my bed put next to my parents, who would alternatively get out of bed and turn me over either from my back or to my stomach. It was in the days of the old heavy plaster; the weight of my legs was extremely heavy. I think this was where I first developed problems with my sacrum and the pain that I have always experienced. After surgery (one year later), I took my first steps with tripod sticks—just four steps. But they were my giant leap for mankind. I could suddenly stand, and more importantly, move on two sticks for the first time in my life—what a victory. I can remember that my parents, brothers, and myself were standing hugging each other with tears streaming down our faces. I had done it. Then two years later, I had a detached retina out of the one eye I could see out of. I became totally blind. I felt terrified to move, yet I had to go up and down the stairs, and I was terrified that I would veer too much to the left and fall down the flight of stairs. But somehow I managed it. Once I started at Dorton House, School for the Blind, my life took off, and I was able to take flute examinations with the Royal Academy of Music and I was to develop my singing doing pieces from Handle Messiah.

When I left Dorton, I trained as a telephone switchboard operator and worked for a bank in the City of London. The Commonwealth Trading Bank of Australia was delighted to help me raise money for tailgates on ambulances to help ferry people around with all kinds of disabilities. We took people out every week to places of interest, restaurants, cinema, and other activities. For the first time, they were not disabled people but people first and people with disabilities second. They learned to have fun for the first time in their lives, and they grasped every minute of it.

So what did this do for me in terms of going out and about, meeting people, and projecting my work to improve the lives of people with disabilities? Due to my blindness, I was always anxious about how I would cope, especially finding my way to the toilet and managing at the food table. But somehow I got through it. Naturally, there were people that were not sympathetic when it came to helping me manage my food in a busy place. But I coped with it because I wanted to get out there and socialise. You don’t realise how hard it is until you are put in a position when you can’t do things or go to places by yourself. It is a terribly frustrating time for a person with a disability, and many of those feelings are still there today because society doesn’t really cope well with people who are different.

In 1985, I met the man who was going to be part of my life for the next 24 and a half years. We married in 1987. We were deeply in love with one another, and he coped with all of my issues superbly until he became profoundly disabled with Parkinson’s disease and subsequently Lewy-body Dementia. Ralph died in 2011.

My life radically changed, and I then had to have 24/7 live-in carers, and the cost has been astronomical.

For those of us who are unable to propel themselves in a wheelchair and have to wait for others to move us, that too is incredibly frustrating. I now have a specialist wheelchair that is molded to my body to help me sit up straighter. That is wonderful, and I am now in less pain due to taking Gabapentin in liquid form (I cannot swallow pills) three times a day. Although Gabapentin is a tremendous help, I am always conscious that it is an addictive drug and would not wish to be on it from choice. Also, I now have to be hoisted from bed to chair or chair to toilet. For that reason, I now have to use incontinence protection because it would take far too long for me to get hoisted and manage the toilet successfully. All of this is enormously frustrating and costly. Government funding only meets about 1/3 of the costs of incontinence such as pads, sheets, etc. Also, while much can be provided by the GP in terms of creams, I prefer to use more natural healing products such as Aloe jelly and Bee Propolis cream, but all of these are expensive and add to my overall care costs as well as coping with my contribution to Adult Social Care Services which now charge me £1337.78 per month. I have already bought my home twice over in care costs. These are the hidden issues that most people have no knowledge of. They will find that out in later life when they too may need care. So my message is to keep as healthy as you can, as mobile as you can, and keep an active mind for as long as you can. For all of these things will help to keep you out of a residential care home. I am not decrying residential care—some people have a great need for it. For those, there is no option. But for those of us that are now in the later stages of our lives, we should be looking at our homes, thinking about adaptations, and whether more thought can be given to such things as wider doorways and ramped access. Those things may keep you out of a care home for now at least. So good luck with all of it because you are going to need it!

To read more about how Cerebral Palsy shaped my life and how I coped with disabilities growing up, then read “Nobody Does It Better Than Me. The Story of Alma. An inside to mine and my families life. Available on all major book retailer websites.

Dr Lin Berwick MBE 

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