MS therapy centre lets Terry 'feel normal again'

Fitness enthusiast Terry Lanksford was diagnosed in 2005 with Multiple Sclerosis (MS). Today, he is on a two-year stem cell trial and a member of an MS therapy centre to keep him physically mobile for as long as possible.

Terry, aged 54, says living with MS leaves him feeling vulnerable and admits he has faced discrimination.

Multiple sclerosis (MS) is a condition that affects the brain and spinal cord. This causes a range of symptoms including blurred vision and problems with mobility and balance.

The MS Society estimates there are approximately 100,000 people with MS in the UK and that each year 5,000 people are newly diagnosed with the condition.

Living with his loving supportive wife, Helen, in Swindon, the couple have just celebrated their 25th wedding anniversary.

Terry told homecare.co.uk: “You feel very vulnerable. I used to be super fit and used to be able to hold my own. Helen could feel safe when we went out. Now I can’t get up or stand up to someone, it’s so frustrating to be in this position.

“I’ve given in to a mobility scooter. We went shopping and all I did was walk around trying to find a seat whilst Helen went into the shops on her own. There are loads of things I can do now, which I couldn’t do before.”

'I get sick of people judging me. They see me and the disabled badge’

Terry also has a wheelchair because it took him so long to get from the car to inside a local restaurant. “They gave our table away because we were late.”

“I get sick and tired of people judging me. They see me and the disabled badge and I get looked at and sneered at by people.”

When Terry and Helen were driving down to Cornwall, they parked in a disabled bay at the service station, when Terry heard two women say: “Isn’t it amazing who can get a blue badge these days. I didn’t bite but I thought you don’t know me, and you don’t know my circumstances.”

For Terry, the physical effects of MS started 14 years ago when he was putting up a curtain pole: “I stepped back and trod on a plastic folder with bare feet and I went like an ice-skating rink. I hit the corner of the desk with my spine and really hurt myself. I woke up the next morning with no feeling in my left arm.”

His doctor sent him to the hospital for tests including a lumbar puncture and MRI scan. The tests came back as positive for MS.

Terry says he inherited MS from his mum. According to the MS Society, there is only about a 1.5 per cent chance of a child developing MS when their mother or father has it.

Terry's mum was diagnosed with MS in 1984: “I said to Helen at the time, I’m going to get that. The neurologists said it was not hereditary, but the people I am meeting with MS, all have relatives with it so it must be gene-related.”

’I am hoping at the end of the trial that I have improved and offer me another stem cell infusion’

Terry is currently on a two-year stem cell trial ending March 2020. The Multiple Sclerosis and stem cell research group is part of the University of Bristol's Institute of Clinical Neuroscience at Southmead Hospital.

Their clinical research focuses on the causes of disability in chronic MS. They collect bone marrow samples from patients for research to investigate ways to manipulate the immune system in the hope that new treatments can be developed.

“I had to go drug-free for one year before they would put me on it.

“I had my first infusion last year [2018]. They take your bone marrow, but they don’t tell you when you are going to get it back. You either get it in your first or your second year and one of those years is a placebo.” The placebo is 750ml of Terry’s own blood.

Three months ago, Terry had his second infusion. He said: “I have noticed a few changes in my right leg, my dexterity in my hands has slightly improved, I’m not waking up so much in pain with my muscles all tensing up.

“I am hoping that they say at the end of the trial that I have improved and offer me another stem cell infusion.”

Terry also uses the MS and Neuro Therapy Centre in Swindon to help with his mobility and wellbeing. Managed by Louise Walker, the centre is dedicated to supporting people with MS, Parkinson's, MND and ME and provides practical support and therapy including an oxygen chamber, exercise classes, crystal therapy and counselling to around 600 members in the local area.

The centre also has a dedicated staff member from the Citizen's Advice Bureau to offer support. Ms Walker said: “The CAB is brilliant, she comes in once a fortnight and will see people from beginning to end. If you have to see the CAB, you have to wait for months and months and months. Caroline helps our users with advice such as not being able to get work and helping them fill out PIP.”

Patients of the centre must have a referral from their doctor or consultant so if a patient has a problem the staff can refer back to them. Carol Walker is a lead physiotherapist and works part-time at the centre said: "We have somebody to go to if there is an issue. If we are listening and thinking this is not following the pattern that the condition should be following, we need you [patient] to go back to your GP and get XY and Z before we are prepared to see you.”

The centre is not funded by the NHS and does not have any government funding. It currently costs over £200,000 a year to run and solely relies on donations by the generosity of its members and other donations throughout the year.

Carol Walker helps Terry to use an Alter G anti-gravity treadmill. Developed with NASA technology, members wear neoprene shorts that zip into a pressurised, airtight compartment. This allows a reduction of the member’s body weight to make walking easier by lowering the impact on joints and muscles.

’When I get on there and I walk, I feel I am normal again'

The physiotherapist said: “People have neurological disorders for many reasons, loss of balance, loss of sensation and pain. What this does is that it tries to de-rate you to allow you to get back to that automatic walking speed because then your brain functions better.

“The brain works on a repetitive pattern. If we all went for a walk together, we would all walk at a different speed and you tend to pair off with people who walk at a similar speed to you.

“When you try and walk with an elderly relative and you’re having to walk really slowly, you find it more tiring than if you are trying to catch up with somebody who walks a lot quicker than you, it is more tiring. If the brain can function more normally, then it has a better chance when you are off it to be reminded that's what it’s meant to be doing."

When homecare.co.uk asked how often should members use this treadmill weekly, Ms Walker said: “This is a very difficult question. Here we try and get it up to a 20-minute walk because that’s probably the longest time someone with a neurological condition will walk without stopping. They may stop after a few minutes to rest or slow down, but we try and keep a consistent pace for the amount of time.”

At the end of his session, Terry said: “When I get on there and I walk, I feel like I am normal again. That 10 or 15 minutes are nice. It’s just getting the brain to work.”

To find out more about the MS and Neuro Therapy Centre or to donate click here