A Man On The Right Track
When Chris admits to having been a self-confessed car enthusiast from childhood you could be forgiven for thinking that the person we are talking about is a petrol head with a need for speed. “I knew all the makes and models from an early age and soon began tinkering with my father’s vehicles and I suppose it just grew from there” reflects Chris. Indeed the passion soon developed into a career and his own business in vehicle mechanics and restoration which he ran successfully alongside his older brother.
It is this inquisitive mind and attention to detail that has served Chris well throughout his life. Some twenty four years ago, aged 37, Chris began suffering from an enduring headache which just wouldn’t go away. “At the time, I feared the worst and hoped for the best outcome” Chris vividly recalls. “Being diagnosed with multiple sclerosis was actually a relief at first” he continues.
That said, Chris was unprepared for what was to follow. “All down my right side there was the constant sensation of pins and needles. This would often result in my right leg collapsing from under me. From diagnosis the progression of the disease was gradual and I battled with fatigue and the increasing need for mobility aids. In time I had deteriorated and went from using a walking stick to needing crutches and then finally needing to use a wheelchair. There is no doubt, it wore me down and bouts of depression followed. I had been such an active person and suddenly found I was unable to carry on as before. It was a difficult time to say the least.”
For many years Chris struggled to find alternative ways to carry on in his business as well as coping with a debilitating and chronic illness until finally he had to relent and give his share of the business he loved to his brother. “For a workaholic this was difficult”, he suggests. “So too was other’s perception of me. For example when I used crutches people naturally assumed that I had broken my leg and then you have to go into the whole ritual of explaining that, it is not the case. However, you do learn to adapt and after I stopped working with my brother I started a part time “Sign making” business to give me a purpose and something to focus on.” But just as Chris had taught himself how to fix cars unknown to him he was one day going to set about learning what actions he could take to make repairs to his own body.
Chris came across the Samson Centre for MS through a chance encounter. Fortunately for him Carol Kitching, a Samson Centre for MS volunteer happened to be organising one of her charity collection days on the high street in Dorking. Upon noticing the wording on the blue collection boxes, Chris immediately made enquiries. A few days later he joined the Samson Centre for MS and immediately grasped what it could offer him with both hands. “From the day I first walked into the building in 2013 three stone heavier than I am now through lack of mobility I might add, I have never looked back”.
It is a bold claim and one that is evident from my own eyes. Chris sits comfortably on the settee beside me. The only outward sign of a mobility aid is a walking stick. He looks younger than his birth certificate would suggest. He appears lean, fit and with a healthy glow about him. “I have had an unbelievable support network behind me here. With physiotherapy and exercise I have come a long way. It hasn’t been like pulling out of the pit stop in pole position at Brand’s Hatch but a slower, more gradual acceleration to where I am today.
I have been able to move forward at my own speed as this was never going to be a race but a test of strength and endurance both mental and physical. Along the way I have been given support and guidance about how to get the best out of my body. But I have also been lucky and my body has responded well. With multiple sclerosis no two people will have the same experience. It is an individual disease and a personal journey and you don’t know how your body will react”.
Part of that support included advice on the wearing and fitting of an FES (functional electrical stimulator) which is a control box no bigger than a pack of cards that Chris wears. This clever, concealed device sends small electrical impulses directly to the nerves in muscles that have been affected by the disruption in the nerve pathway to and from the brain, ultimately caused by the multiple sclerosis. Chris trains three times a week and works in circuit training and indoor rowing alongside his physiotherapy and other exercise programme.
It was during one of his sessions on the rowing machine that Robert Hall a rowing coach noticed his natural stroke and invited him down to the river on a Friday morning to have a go at the real thing in an adaptive rowing boat. “That was it, I was hooked” beams Chris. Now I can immediately see traits of the boy racer. The engine is on and he is about to hit the throttle. “The Friday morning sessions are for people with disabilities and I love every minute of them. I am also keen to encourage others and help out with training some of the junior members. It is a great way for young people to overcome anxiety issues and to gradually build their confidence and realise that there is nothing from preventing them from moving from juniors into seniors and integrating with able bodied adults. I can’t help but ask whether he will ever consider rowing competitively and Chris smiles “I already have!”
We end our conversation there and I look over and his wife Sandra is waiting in the wings. She has been busy helping out by making teas and coffees and herself aptly demonstrating what the Samson Centre for MS is all about – people not only helping themselves but people helping others too.
When Nev Dean looked into the eyes of his wife Claire on their wedding day and sang the words to the song he had written for the occasion, he meant every word. The lyrics to “You Make Me Whole” were both poignant and true because from that day forward two became one to form “Team Dean”. It is difficult to tell Claire’s story without reference to Nev as their lives are inextricably interwoven.
Born in Derby in 1979, Claire moved at the age of four to a small village in South Wales. Claire found her own voice at an early age. With her ultimate goal an audition for the County Schools’ Choir, she had to overcome the hurdle of a nerve-racking first round selection. Like everyone else on that day she duly sang a rendition of “Happy Birthday to You”. With six places on offer Claire was not short listed. With her hopes dashed she was quite simply reduced to tears. However, the disappointment was to be short lived as six places became seven and Claire promptly went through to the auditions where she won a place.
Music has played a fundamental tune in a life that has witnessed Claire sing for Junior School, High School, Youth and University choirs. At the age of fifteen she won the Welsh Singer of the Year competition. She still sings today and writes songs alongside Nev.
Everything sounds amazing but there is more to this story. Claire has multiple sclerosis which is a debilitating disease that attacks the central nervous system and is the most common neurological condition among young adults today. A fact that Nev knew long before he fell in love with the girl he first set eyes upon in the yellow swimming costume at the local pool.
Her diagnosis came while Claire was in her second year at university. “It began with an altogether strange sensation in my left arm. It would suddenly shake and shudder uncontrollably without notice or warning. At the time my friends and I thought it was quite amusing, this arm having a mind all of its own,” she vividly remembers. “This was closely followed by tripping over my own feet as opposed to obstacles or uneven paving,” she continues.
She knew something was wrong and after some swift tests the diagnosis of multiple sclerosis quickly followed.
Having been hit by a thunderbolt, Claire carried on with her studies and duly completed her degree in English & American Studies at Leicester University whilst remaining immersed in her music.
Multiple sclerosis can be a tiring condition and after a short career in offshore and private banking Claire realised that it suited neither her nor her illness. The classically trained young woman, who had always sung and had flirted with the sounds of Bon Jovi in her youth and moved into the meaningful and folksy tunes of Tori Amos and Jewel, soon realised that she belonged with Nev in his studio at the bottom of their garden. “It is so fantastic to be involved in something that both excites and interests me. To cap it all, in the studio the equipment and computer are all within easy reach. There I can do something meaningful. It’s a good feeling. On top of that the studio is warm in the winter and cool in the summer, – what more could I ask for,” she concludes enthusiastically.
With Nev by her side she can concentrate on her lifestyle and make choices that benefit her health. Exercise is particularly important for people living with multiple sclerosis as it assists in keeping muscles moving and Claire exercises on a daily basis combining gym work, physio, stretch classes and rowing in a specially adapted boat all complemented by meditation, swimming and a strict diet. “I’m very lucky. Nev does all the cooking and works wonders with fresh ingredients – mainly vegetables and salad with some fish for good measure – making sure that our diet benefits us both. The balance of exercise and nutrition is working for me and I feel healthier now than I have done in years.”
Motivation plays an important role in this condition and Claire has it in spades. She is an inspiration to be around and was indeed one of the first people with multiple sclerosis that Robert Hall coached on the river Wey in a specially adapted rowing boat. Whether Claire accomplishes her routine alone, or with Nev as the driving force, clearly evident is a very real, honest and healthy “can do” attitude. Claire is a modern day Alice in Wonderland, polite, well-mannered and deeply inquisitive. While Alice takes us “Through the Looking Glass”, Claire gives us “Mirror, Mirror”, a song taken from her “Love and Carrots” album which she has written and recorded. To top it off, Nev has made the video accompaniment and within this production the two worlds of Alice and “Team Dean” also become one.
Part of Claire’s routine is being part of the Samson Centre for multiple sclerosis. The Samson Centre is a totally self-funded charity which provides physiotherapy, exercise classes, gym sessions and oxygen therapy for people living with multiple sclerosis. With running costs of nearly £200k per year it relies on fundraising activities and donations to support its activities. If you would like to help more people like Claire visit our donations page.
A Man In Control
I am sat opposite Martin in his sitting room looking out over a beautifully kept garden. He is quiet, reflective and considered and has for the past six years been Chairman of Trustees for the Samson Centre for multiple sclerosis and so I pose the question, “In three words how would you best describe the qualities you bring to your role as Chair?”
A gentle smile passes across his lips. Intuitively he has the measure of me and knows that I will already have chosen my own three words. Now he contemplates the question and how closely our thoughts will match. He ponders a while, not because it troubles him but simply because he wants to beat me at my own game.
He provides the first two answers ‘balance’ and ‘fairness’ and then there is a pause before he finally delivers his third word ‘cohesion’ and immediately we both know that he has laid the trump card. Sadly, his word and not mine but it absolutely sums up what he brings to the role. Martin is the glue that holds it all together.
Having overseen the building of the new physiotherapy suite and about to embark on the charity’s most ambitious project yet, that of completing a new extension to incorporate counselling quarters as well as increased oxygen therapy capacity, what has brought this man to where he is today.
Perhaps it can be said that ‘control’ has been at the core of his adult life. Whilst never controlling, he is a man who knows his capabilities and how far he should push himself before handing the baton to someone else. Therefore he remains in control.
In his early twenties, having embarked on a Civil Engineering degree at Sheffield University he soon realised that he had embarked on the wrong path. He stayed for two years and made the most of his time by becoming chair of the students’ entertainment committee and arranging weekly discos and bands to entertain some twelve to thirteen hundred students. He learned disciplines that have remained with him for life facilitating: the sharp end of negotiating, motivating, influencing, managing, listening, appreciating when to wade in and knowing when to watch from the side lines. After that second year he took away from the university far more than he gave up. “It was the 70’s,“ recalls Martin. “What wasn’t there to learn! Not only were there the students to entertain (and have escorted off the premises at times!), you also had the bands, security staff, the bar and even drugs to contend with. Anything went or it would have done if you’d let it! You certainly had to have your wits about you.”
Having walked away from his degree, HM Customs and Excise beckoned where he worked as a VAT Inspector until an internal document caught his eye shortly after a posting to Birmingham. “‘Normal rules don’t apply’ it said and immediately I was intrigued since it was providing a double benefit. Firstly the possibility of relocation and then the added bonus of training in a career in IT,” Martin remembers. It was an opportunity he seized with both hands.
Computers suited Martin and in 1984 after five years with HMCE, having become an accomplished programmer, he was ready to move onwards and upwards. Beginning with the Milk Marketing Board he had found a career that would see him move through the ranks to Project Manager and finally to IT Manager for Unigate covering the UK HQ and St Ivel European Foods Division. Extensive travel was required and Martin was flying backwards and forwards to European destinations as well as visiting the many UK offices and depots.
In the meantime Martin was to face a situation of a different kind and something by his own admission that hit him like a bolt from the blue. “I remember the day, the room, the consultant and his exact words all so vividly. But not the day before or the day after,” he tells me. It was 1995 and Martin had just been diagnosed with multiple sclerosis. That such a minor symptom as neck pain could herald the onset of a life-altering condition was indeed a bombshell.
“The pain was eventually eased by the use of steroids and I even remember tiling a bathroom on them,” he smiles, which reveals a very real sense of fortitude even in the most trying of circumstances. “All in all I remained in pretty good shape for the next four years,” he ends.
Everything started to change in 1999 when Martin’s symptoms began to present themselves in earnest. “I’d just returned from working in France and as one flight touched down I boarded another plane the very next day en route to Italy for a family holiday. Unfortunately, I had left France with more than my suitcases, catching campolybacter, a nasty form of food poisoning. Although I rested up in Italy, it had knocked me for six and from that point on I started to rely more and more on the use of a walking stick.”
Within eighteen months, Martin’s mobility had deteriorated further and constant travel and flights were becoming problematic. “I asked to be moved from my position and revert back to project management and therefore have a base in one office.” This was agreed and Martin was supportive of the work of his successor and equally was very much left to operate autonomously. When Dairy Crest bought the section of Unigate he worked in it they were also very helpful and ensured that the facilities he needed to work in his wheelchair were available to him.
In 2007, aged 53, Martin elected to retire due to his ill health. This meant that he remained in control and as ever his decisions were running ahead of his symptoms.
Shortly into his retirement Martin happened across a leaflet about the Samson Centre for multiple sclerosis and his first thoughts were “why didn’t anyone tell me about this before? Living just a mile away and knowing nothing about it!”. Within a week of first seeing the leaflet Martin had joined, soon thereafter became a Trustee and then two years later took on the role of Chairman of the Trustees, a position he still holds today.
“The Samson Centre is such an amazing place for people living with multiple sclerosis. It provides physiotherapy, exercise and oxygen therapy all within a supportive and welcoming environment. It also offers an excellent opportunity to talk to other people who have a real understanding of living with what is essentially a progressive and debilitating condition.”
In Martin we see a life with balance, humour, travel, entertainment, health, charitable commitments and his two grown up children all playing important roles. This year he and his wife Eda are cruising round the Baltic Sea which will see them both onshore and offshore as they take in the coastlines of Norway, Denmark, Sweden, Finland, Estonia and Russia. Previously they have taken a Safari in South Africa, visited Crete and Cyprus as well as spending holidays within the UK. They enjoy the theatre, eating out and quality family time. Eda is calm, sensitive and also has her own part-time career.
I am looking out over to the greenhouse on the left and Martin is sitting in his electric wheelchair. I ask him who looks after their garden. This time I know the answer before he tells me, “it’s Eda.” It doesn’t surprise me in the least as I capture a garden that is their haven and something they can enjoy peacefully together. I just knew a gardener wouldn’t be involved. A lovely private space to look out over and enjoy with no interruptions, suggestions or intrusions from the outside world.
If you would like to help Martin to help even more people who are living with multiple sclerosis visit our donations page or text “SCMS02 £10” to 70070 to donate £10 and help people fight their MS.