FAMILY LIFE: I don’t feel alone any more

AFTER eight years in total denial of his condition, Multiple Sclerosis sufferer Terry Lanksford is drawing on the unstinting support he’s found at Swindon Therapy Centre for Multiple Sclerosis.

It’s at the state-of-the-art centre, relaunched last autumn, that Terry, 52, has finally come to terms with his illness. He is making the most of the therapeutic treatments on offer and has made lots of friends.

“There are so many people who come to the centre, all at different stages with MS, and it is fantastic to talk to them because we are all in the same boat,” he said.

“I don’t feel alone any more. I am part of the family there and they couldn’t be more welcoming.”

Weekly sessions in the hyperbaric oxygen chamber boost his wellbeing and he describes the latest piece of equipment, a £36,000 treadmill originally designed to simulate walking weightlessly for astronauts, as “brilliant.”

“I’m zipped into special shorts which are inflated with oxygen,” Terry explained. “This has the effect of taking away about 50 per cent of my body weight so I am able to walk normally on the walking machine – it is really wonderful. As I get fitter they will reduce the amount of oxygen, so my body works harder.”

Terry, who is married to hairdresser Helen, 54, lives in Peatmoor, Swindon, and says he strives to stay positive and optimistic that he will get better. Having been initially diagnosed with relapsing-remitting MS, which means people have attacks of symptoms which then fade away either partially or completely, Terry’s illness has now been classified as ‘secondary progressive’ as he has paralysis in his left leg and struggles to walk.

He is pinning his hopes on a pioneering stem cell trial being spearheaded by Professor Neil Scolding at Southmead Hospital in Bristol.

“I was so chuffed that he thinks I might be suitable for the trial,” said Terry. “I am deteriorating and I’ll try anything I can.

“I go back to see Professor Scolding in November when the drugs I had been taking will have been out of my system for 12 months, and then I have to go through loads of testing before things can go any further. I am keeping everything crossed.”

Terry suffered his first MS episode in 2005. He explained: “I went up to my office and noticed some plastic folders had fallen on the floor. I slipped on one of them and it propelled me back on to the corner of the desk, hitting the middle of my spine. It was agony and I realised that my right arm was paralysed.

“I went to see the doctor and he asked whether there were any neurological problems in the family – I told him my mum had MS, and he immediately sent me off for loads of tests. I couldn’t believe it when the neurologist broke the news that I had MS.

“My poor mum was totally devastated. She’s 74 now and has had MS for more than 30 years. We do talk about it, but not all the time – there’s no point dwelling on things, it doesn’t help anyone.”

Terry’s paralysed arm returned to normal and, apart from being put on medication, he carried on with his everyday life.

“I chose to keep it quiet, because I wasn’t showing any symptoms and, to be honest, I was in total denial,” he explained.

“I went on like that for eight years, until I relapsed in 2012. I used to kid myself, is it MS, maybe it isn’t, have the doctors made a mistake?

When Terry was made redundant from his job in motor finance in 2008, he set up his own painting and decorating business, but MS returned.

“I didn’t feel well at all, and then I had a massive relapse. My legs went from under me in the garden and I lay there thinking ‘I’ll get up in a minute’, but I couldn’t. In the end it was a couple of hours before my wife managed to get me back into the house.

“It really hit hard then that this was my life, and I was really scared, but I couldn’t deny it any more, I had to take it on board.”

Born in Carshalton, Surrey, Terry’s family settled in Royal Wootton Bassett when he was 18. He and Helen have been married for 23 years.

“Helen is my rock,” Terry smiled. “I don’t know what I’d do without her, but I do feel guilty about her having to cope with it all.

“We would love to live by the coast – but my wife wouldn’t want to leave her hairdressing business and I rely on the MS centre in Swindon.”

Terry strives to retain his independence and is able to drive an automatic car. He had a walking stick but after some bad falls, including a tumble down the stairs resulting in cracked ribs, he now uses crutches which give him better stability. He also has a mobility scooter.

“One day I went to the outlet village in Swindon with Helen and struggled round on crutches – I thought to myself ‘this isn’t quality of life’ so I got a mobility scooter.

“It’s been a godsend, though I do sometimes go into the garage to get the scooter and see my motorbike leathers hanging up and feel very sad I can’t ride a motorbike any more.”

Terry said he endeavoured to remain positive about his condition.

“Some days I wake up and I feel really good and I get out there and cut the grass, wash the car, go the gym – I used to be so fit. Other days I’m not so good and, even now, I struggle to get my head round it.

“It’s okay if I’m sat down somewhere, because I feel like a normal person. But when we go to the seaside and Helen is on the beach with our dog and I’m on the promenade on my mobility scooter, it is heartbreaking.”

But Terry is thankful for all the help he receives at Swindon Therapy Centre for MS, a charity which is a shining light in its field and relaunched as a Neurology Resource Centre last October to recognise the fact that it not only helps those with MS but people suffering from all kinds of neurological conditions, such as Parkinson’s Disease.

The charity launched in 1983 and, since then has helped hundreds of patients in Swindon and the surrounding area. Last year a £400,000 grant from The Big Lottery enabled them to embark on a big expansion project. The first floor of the centre at Bradbury House, Westmead Drive, has been refurbished and a brand new state-of-the-art gym added so those with MS can stay as fit as possible. Therapy rooms have been created and two new part-time support workers taken on.

There are currently 500 users at the centre, with an estimated 3,500 MS sufferers in the catchment area, and the aim is to reach out to as many of those as possible.

“It’s a brilliant place, and I feel so lucky that we have something like this here in Swindon,” Terry grinned. “I go down there a couple of times a week for my treatments and for a good chat with my friends over tea and biscuits. I would encourage anyone with MS or Parkinson’s to come along — it makes all the difference.”

To get in touch with Swindon Therapy Centre for MS visit www.msswindon.org.uk or call 01793 481700.