Living a complete life

To mark Cerebral Palsy week, we spoke Ian Kern-Martin, who has been living with cerebral palsy (CP) since he was diagnosed at the age of 18 months. He believes that being in a wheelchair shouldn’t stop you from having a complete life.

Ian had a good head start in life with a supportive family who raised him as if there was nothing wrong with him.

“I was blessed to have parents who would not let my CP make any difference to my academic or social progress. I was raised as a normal little boy and was encouraged to socialise normally.”

Although he initially went to a specialised school for CP children during his primary school years, from standard eight onwards he went to mainstream schools.

“The reaction of my classmates and teachers was generally very good, but I think this had a lot to do with my attitude - I was determined not to let my disability hinder me. I actually don’t have any disabled friends, by choice, as I decided that I wanted to function in a ‘normal’, able- bodied world from the start,” he says.

Kern-Martin has spastic cerebral palsy, the most common type which occurs in about 70-80 percent of CP cases. He describes it as “a non-progressive, non-genetic condition that is usually caused by a lack of oxygen, which causes brain damage of varying severity.

“It has affected me in that the part of the brain which controls my legs. I was born six weeks prematurely and did not breathe right after I was born. In my case, it has not affected my intellectual capacities. There are various forms of the condition and the one I have means that my muscles are chronically tight.”

'CP can be frustrating'
However, he hasn’t let this hold him back and is now pursuing a career in journalism, which pushes him both physically and mentally.

“Having CP has definitely affected my life, mostly in the sense that I have had to make major adjustments in terms of daily activities - such as showering and dressing. There are certain things that I am not able to do, such as drive or go running around the block. Also, a lot of physical activities require a lot of effort, which can be highly frustrating.”

He works out several times a week to ensure that his muscles remain flexible.

“The conventional way to treat the condition is physiotherapy, but I gave that up when I was 24 years old and now go to a personal trainer four times a week. We focus a lot on stretching of hamstrings since they are compromised as a result of the CP,” says Kern-Martin.

“I do a lot of walking in leg braces to stretch the muscles, knee and ankle joints. I also do functional training. It is absolutely vital to maintain muscle length and flexibility. If I didn’t, the muscles would be so tight that they would not be functional at all.”

His philosophy to exercise is clear and simple: “There are certain things you have to just accept and get on with.”

‘Focus on your strengths’
He adds that it has had some impact on him emotionally too: “I think having a normal brain and knowing exactly what situation I am in has sometimes been difficult. It has frustrated me in the past, but I have learnt to focus on my strengths and worked on them and my mission to achieve in all aspects of life has helped me to over come all sorts of stuff.”

One such goal was realised last week for Kern-Martin when he reached a goal he had been working on studiously for the past eight months: to walk one kilometre around Zoo Lake in Joburg. He describes this as his “own personal Comrades.”

He says he regards a positive attitude as the most vital part of his success. “I think the most important thing for me is that I can get people to see that having CP is actually an opportunity - rather than a death sentence.”

It is this positive thinking which has seen him flourish in his professional life, as he has refused to let his condition hamper his ambitions. “I was so determined to be a journalist that nothing was going to get in the way. Obviously there are physical hassles such as stairs, but I just get on with that and climb them!”

‘I’m not dependent anymore’
Another issue with which people with physical disabilities have to deal with is the reaction of other people. But again, this has not worried Kern-Martin too much. He says, “I think most people can see that I am very comfortable with myself and my circumstances and this seems to put them at ease. The majority don’t even ask why I am in a chair. It also helps that my speech is normal, so academically I can relate on a totally normal level.”

He claims that his newly found independence is also proving difficult for his mother to accept. “I think it was almost expected that I would be dependent forever and now that I am not, it has been difficult for her to adapt.”

Having had CP all his life, Kern-Martin has some advice for others with the condition, and for their families: “Use your talents, focus on what you are good at and appreciate the gifts you have. Do as much for yourself as you can – but most importantly, learn to laugh at yourself and keep your sense of humour alive.

“The rules of life are exactly the same for everyone and nobody should be expected to treat you any differently, simply because you are disabled.”

Some facts on CP

• Cerebral palsy is an umbrella-like term used to describe a group of chronic disorders which all entail impairing control of movement.
• These disorders appear in the first few years of life and generally do not worsen over time.
• Several of the causes of cerebral palsy that have been identified through research are preventable or treatable.
• Research suggests that cerebral palsy results from incorrect cell development early in pregnancy.
• CP usually appears in the first few years of life.
• CP cannot be cured, but due to medical research, many people with CP can enjoy near-normal lives if their neurological problems are properly managed.

What causes CP?

• Faulty development or damage to motor areas in the brain that disrupts the brain's ability to control movement and posture may cause these disorders.
• Cerebral palsy may be congenital or acquired after birth.
• Several of the causes of cerebral palsy that have been identified through research are preventable or treatable e.g. head injury, jaundice, Rh incompatibility and rubella (German measles).

Symptoms

• Difficulty with fine motor tasks (such as writing or using scissors).
• Difficulty maintaining balance or walking and involuntary movements. The symptoms differ from person to person and may change over time.
• Some people with cerebral palsy are also affected by other medical disorders, including seizures or mental impairment, but cerebral palsy does not always cause profound handicap.
• Early signs of cerebral palsy usually appear before three years of age. Infants with cerebral palsy are frequently slow to reach developmental milestones such as learning to roll over, sit, crawl, smile or walk.

Diagnosis
Doctors diagnose cerebral palsy by testing motor skills and reflexes, looking into medical history and employing a variety of specialised tests.

Although its symptoms may change over time, cerebral palsy by definition is not progressive. Thus, if a patient shows increased impairment, the problem may be something other than cerebral palsy.

Treatment
There is no standard therapy that works for all patients. Medication can be used to control seizures and muscle spasms, while special braces can compensate for muscle imbalance.

Surgery and mechanical aids to help overcome impairments may be employed.

Counselling for emotional and psychological needs and physical, occupational, speech and behavioural therapy are often needed.

(Amy Henderson, Health24.com, updated 2008)

Read more:
Cerebral palsy: Guide for parents
New clues to cerebral palsy