Stepping out to fight disability

With all eyes on her, she is the one setting the pace. Her every move will be copied by the class, so each step has to be perfect, her poise, balance and timing crucial – or the session would simply go to pieces.

For an hour at a time for up to ten sessions a week, the mum of one from Musselburgh encourages her Zumba fitness classes to push themselves to the limit.

But if it’s tough going for the class, it’s even harder for Julie.

While they are sweating it out trying to get fitter, instructor Julie is gritting her teeth and just trying to keep her balance, quietly battling a debilitating condition which is threatening to waste away her leg muscles and which could ultimately leave her facing A life of pain, stuck in a wheelchair.

“I remember going to the gym a while back and thinking I was struggling to do what I used to do, my legs weren’t right,” recalls Julie, 37. “I went to the doctor, he said it was CMT, eventually I’d be wheelchair bound and there was nothing I could do about it.

“It was quite blunt and shocking.”

For most of us, CMT would mean very little. But Julie was acutely aware of the misery the neurological disorder can bring – for it already affected several members of her own family.

Although little heard of, CMT – short for Charcot-Marie-Tooth and named after the scientists who discovered it – is one of the most common inherited conditions of its kind in the world. Currently incurable and steadily progressive, it affects around 23,000 people in the UK, causing muscle weakness in the lower legs and hands, leading to chronic pain and disability.

Julie’s grandmother, mother, uncle and her brother all had the condition. But as a young, fit and active woman, Julie grew up thinking she was the lucky one in the family not to be affected.

“All through my youth I was engaged in athletics and I was fine throughout university,” she recalls. “I left university, took a desk job to pay off my student debts and became less active, so I decided to go to the gym.

“It was then I realised that my legs had started to change, and something wasn’t right.”

In fact they had taken on a classic CMT shape. “It’s called ‘inverted champagne bottle’,” she explains, “It looks like an upside down champagne bottle, the ankle is very, very thin, the lower calf is thin to the knee and then the quadriceps – the muscles at the front of the thigh – are normal, so it looks quite awkward.

“I was unable to stand up on my toes and my balance wasn’t right.

“Things most people take for granted, like getting up from a chair, was difficult and walking around a corner made me unsteady.”

Julie was living in her native Chicago at the time. And the news left her reeling, for she had seen the terrible upset and pain the condition, which damages the nerves outside the brain and the spine, had caused to her uncle and her brother in particular.

“My brother has chronic pain as a result, and my uncle, who has five children, had to use ugly splints on his legs to help him walk.

“It’s progressive, it gets worse as time goes on. Recently it’s affected my mother in a different way, her hands aND forearms are starting to be affected.

“There’s muscle waste in her  fingers. She’ll be carrying something and suddenly it’ll fall. She’s in constant pain and cold because her circulation isn’t good either.

“I wanted to do everything I could to try to avoid all of that.”

She carried on exercising in a bid to build up the already wasting leg muscles. Then, while still coming to terms with her condition, Julie’s life took a curious twist. Searching through MySpace one day, she spotted an Edinburgh band. Quickly hooked on their music, she got in touch and had soon embarked on an internet romance with one of its members, Chris Glover.

In 2008, she left Chicago to come to Scotland to marry and set up home with him.

As she settled into her new life, Julie turned to the then growing craze of Zumba in the hope of making her legs as strong as possible.

“It wasn’t easy though. For example, if I stand with my feet hip distance apart and try to turn to one side, is impossible. I told myself it was a challenge. I know I can’t change CMT, but I wanted to see what I could do,” she says.

Just as she felt she was making progress building up leg muscle, she discovered she was pregnant. But that news brought fresh concern, as pregnancy can worsen CMT and because it is a neurological disease, special care is required in the use of anaesthetics during the birth.

“I was terrified,” she admits. “I was doing Zumba classes six times a week and I really wanted to keep exercising. I was really scared that I’d end up in a wheelchair.

“Thankfully the anaesthetist at Edinburgh Royal Infirmary knew all about CMT,” recalls Julie. “And my GP was happy for me to continue exercising, so I was able to keep working to try to prevent any further muscle wastage.”

Son Caeleb was born without any problems in September 2010. Just a month later, Julie, who lives in Musselburgh’s Haddington Road, qualified as a Zumba instructor.

She believes the classes have helped her preserve what mobility she has left. And a chance encounter with a treatment normally given as a health spa beauty therapy has also, she believes, helped her battle the condition and aided her brother in America too.

“I had a treatment called Ionithermie at a local gym spa which involved the beautician putting little electrodes on the skin which is to help toxins work their way out of your system.

“I went back for about six treatments and felt my balance was improving. I wasn’t sure if it was down to that or not, so I thought I’d look into it.”

She contacted physiotherapist Graham Curlewis, of Physis, in the Capital’s Craighall Road, to see if he shared her theory.

“He’s changed my life,” she says. “He found out all he could about CMT and said that electrical stimulus to the lower legs – using a portable machine similar to a Tens machine – might be worth trying.”

Now she uses the machine on both legs for three hours at a time, but says the results have been incredible. “I don’t know if it’s a combination of exercise and the machine, or what, but I have put muscle on my legs and my balance has recovered.

“I mentioned it to my brother in America, and now he’s using a similar machine which seems to be helping alleviate some of his pain.

“It might not work for everyone, but for me it’s been amazing.”

It’s inspired her to take the first steps in training for a career in physiotherapy for herself.

“All these things happened because I came to Scotland,” she grins. “I have a lovely husband, a wonderful son, I’m looking at a new career and while I can’t stop CMT, I’m doing lots to slow it down. I’m more happy now than ever.”

• For details of Julie Glover’s Zumba classes, go to www.zumba-toning.co.uk

Little things can affect in big way

Charcot-Marie-Tooth (CMT) is an incurable and steadily progressive inherited neurological disorder.

It affects around 23,000 people in the UK, causing muscle weakness in the lower legs and hands. Most people are diagnosed in adolescence or early adulthood. But many people struggle undiagnosed with feelings of fatigue, painful limbs, twisted ankles and balance problems.

CMT has many different characteristics, but commonly there is a loss of muscle and touch sensation, predominantly in the feet and legs but also in the hands and arms in the advanced stages of the disease. Scoliosis – curvature of the spine – is common and there are other orthopaedic complications, leading to a variety of mobility and dexterity problems.

Trustee at charity CMT UK, Karen Butcher explains: “CMT affects some 23,000 people in the UK and yet not many people have heard of it or know its symptoms because it is rarely spoken about.

“It is the seemingly little things that can really affect those with CMT in a big way; hammer toes can make wearing shoes painful and most people find it difficult to find suitable shoes, let alone fashionable ones. Later in the disease there is difficulty with carrying out tasks requiring fine motor skills so it can be hard to do buttons up.

“Once people are diagnosed with CMT, they often only know others in their family who also have the condition and feel very isolated.

“It is important that we reach these people, arm them with information and let them know that they can have a reasonable quality of life with normal life expectancy.”

September is Charcot-Marie-Tooth awareness month and Friday 28th September is global awareness day. To find out more visit www.cmt.org.uk.