Meeting Motor Neurone Disease

by Christina Sexton Motor Neurone Disease, or MND, is a rapidly progressing terminal neurological disease. There is still no known cause and no cure for MND. In Australia, about 1,400 people suffer from the devastating effects of MND. And each week sees 10 people die from MND and another 10 receive a diagnosis. Motor neurons are the nerve cells that control bodily movement of our voluntary muscles, the muscles we move consciously. These include our arm and leg muscles, and those that enable speech, swallowing and breathing. When the disease damages these neurons, the muscles gradually weaken and deteriorate. What sets MND apart from other degenerative diseases is that, in most cases, the senses and memory are unaffected. Tragically, MND sufferers witness their bodies becoming more and more paralysed as their minds remain intact.

To raise awareness, MND Australia runs MND Week in the first full week of May each year, plus a Global Day of Awareness on 21 June. Walk to D’Feet MND events happen in most states across Australia. You can create your own fundraising web page for your sponsors or even join a team of volunteers to help run an event. For more information about what your state has planned, go to mndaust.asn.au.

Meet Two Amazing Women Affected by Motor Neurone Disease

Liz Sandwith

Liz Sandwith, 48, knows only too well the devastating effect that MND can have on a family. In 2006, after a four-and-a-half-year battle, Liz lost her husband Nigel to the disease. He was only 47 years old. Liz remembers Nigel as fit, strong and handsome. Before his diagnosis, he was a passionate windsurfer who loved being out and about on the water. MND is known for its rapid progression, and Nigel was no exception. His speech was affected early on, but, according to Liz, he didn’t take his diagnosis lying down. He was always thinking ahead, anticipating what his needs would be as the disease progressed. As a partner in an electronics company, Nigel managed to source a special computer and attached it to his wheelchair. By moving his leg on certain trigger points, he was able to guide his computer’s mouse. This meant Nigel could continue to work, and it also helped him communicate with his family. Despite Nigel’s courage and resourcefulness, his illness placed a huge strain on Liz and her family. “Watching someone you love—someone who is fit, healthy and strong—begin to deteriorate and progressively weaken with this tragic disease is torturous. I think I cried almost every day, from his diagnosis in 2001 until his death in 2006. And, of course, since then.” After Nigel passed away, Liz, along with her two children Emma and Alex, got involved with the NSW MND Association. The family has not only participated in the Sydney City to Surf (for which they were sponsored to raise funds for MND research) and the Walk to D’Feet MND but also volunteered on Cornflower Blue Day selling MND merchandise. “MND will always be close to our hearts. To all those living with MND today, I know how extremely challenging it is, and I really hope there will be a cure in the not-so-distant future. We still miss Nigel, but through adversity some good can come, and I certainly aim to live in the moment and appreciate the simple things in life.”

Sue Colyer

With a degree in physical education, 20 years of teaching leisure and sport management, a Master of Science and a PhD under her belt, Dr Sue Colyer, 66, certainly appreciates the value of health and fitness. Sadly, MND has been a presence in Sue’s life for many years. In 2002, her partner Dr Heather MacGowan OAM was diagnosed with MND, as were a former teaching colleague and a past mentor. Sue stresses that, like most MND sufferers, Heather never lost herself. She describes her former partner as incredibly courageous: although Heather’s body deteriorated, her mind did not—her intellect and personality remained whole, right up until the end. When Heather received her diagnosis, she and Sue joined the Stadium Snappers, a masters swimming club in Western Australia, so they could focus on their health and wellbeing. And when another member of the swimming club was diagnosed with MND, the Snappers founded an annual fundraising swimathon. Nine years later, club members have swum more than 400 km and raised over $43,000 for MND. Heather has since passed away, and this year, Sue plans on splashing out an impressive 60 laps (3 km) in her memory. For Sue, maintaining an active lifestyle has been difficult at times. Like many carers, she found it very hard to keep up her exercise routine during Heather’s illness. This was due partly to Heather’s rapid decline and her sudden need for more comprehensive care. (Tragically, such a decline is typical of MND’s progression.) And with all her energy focused on her growing role as carer, Sue dived into the pool whenever she could—swimming became a vital form of stress release. Heather, too, looked to exercise to help her through each day. A passionate bushwalker, she managed to walk a gruelling 490 km of the WA Bibbulmun Track after her diagnosis. Sue’s fitness has been an important factor in another critical way. When she developed endometrial cancer, her excellent fitness level helped her body heal after major abdominal surgery. She was back in the water just three weeks later, and she hasn’t stopped since. It’s now been three years since the operation, and she’s in the clear. After being a board member of the MND Association of WA for seven years, Sue is now putting her energies into running the association, and she continues to train with the Snappers four times a week. All donations to the Snappers Swimathon can be made through the MND Association of WA. Visit mndawa.asn.au.