Dennis Canavan at the start of the West Highland Way with (from left) his grand-daughter Amy, his daughter Ruth and his son Adam.
Picture: Ian MacNicol

Devastation by degrees
DENNIS CANAVAN

IN March this year, Dennis Canavan's eldest son, Mark, died aged 41 from motor neurone disease. The former MSP's middle son, Dennis John, 35, died from a brain tumour last year and his youngest, Paul, died in 1989 at the age of 16 as a result of a malignant melanoma. Last week his daughter Ruth Lister walked the West Highland Way in their memory, with Dennis walking part of the way with her. Here he recounts the disabling impact that MND had on Mark.

UNTIL three years ago, our Mark never had a serious illness in his life. After leaving school, he did a degree in engineering and then went globetrotting. His successful career took him to responsible positions in places as far afield as the USA and Australia.

When he returned to Scotland a few years ago with his wife, Sandra, they seemed intent on settling here, especially after the birth of their son, Tommy. However, it came as no great surprise when they decided to move to Australia as that was Sandra's home and Mark had obviously enjoyed his time there.

With his CV, he had no problem finding a good job and the future looked bright. In autumn 2004, I was delighted when Mark and his family returned to Scotland for a break. But it turned out to be a heartbreak.

Shortly after their arrival, Mark told me that he had amyotrophic lateral sclerosis. When I confessed that I didn't know what he was talking about, he explained that it was a form of motor neurone disease. I had heard of MND but knew little about it.

At that time the only unusual thing I noticed about Mark was that he was sometimes rather unsteady on his feet. That in itself did not seem too alarming but, the more I learned about MND, the more I realised how serious it was.

The next time I saw Mark was about six months later when I visited him in Australia. I was shocked. He needed crutches to enable him to walk and he had lost a considerable amount of weight. He was still able to communicate, though, and his employers had enough faith in his ability to keep him on the payroll.

When I visited Mark again early this year his condition had greatly deteriorated. He was using a wheelchair and his erstwhile sympathetic employers had dispensed with his services. He was scarcely recognisable. His physique was skeletal. His mobility was virtually zero and his speech was absolutely zero. Nevertheless, he was able to communicate using a tiny device attached to the top of his baseball cap which enabled him to use his neck muscles to operate his computer keyboard. It was a vivid demonstration that his power of intellect was as strong as ever - and that is one of the most important things to realise about MND: the mind is still there, even when the body is wasting away.

In January, I was told that Mark would probably not see the year out. In the event, the end came much sooner. He died on 19 March and is now at peace with his brothers.

Can any good come out of such tragedy? Well, maybe. Mark's courage and faith inspired all around him, particularly his sister, Ruth, who embarked on a challenging project to commemorate her three brothers. Last week she walked the 95 miles of the West Highland Way to raise funds for the Scottish Motor Neurone Disease Association (SMNDA) and for Cancer Research UK. She also aims to raise public awareness. Most people know something about cancer, because we all know someone affected by it. But not so much is known about MND.

In Scotland this year, about 120 people will be diagnosed with MND and a similar number of people who have the condition will die. MND is the term used to describe a group of diseases which damage and destroy the motor nerves in the body. Despite extensive scientific research, there is no known cause and no known cure.

Amyotrophic lateral sclerosis is the most common form of MND. In 10% of cases it is inherited, while the rest are sporadic. As MND is progressively disabling, it causes increasing muscle weakness, leading to loss of function and gradual loss of mobility. Despite that, people with MND are generally in control of their intellectual faculties.

Many of the symptoms can be eased through medical treatment, special equipment and psychological support. Assistance with mobility is vital and, when the power of speech is eventually lost, alternative forms of communication may be possible.

Specialist care advisers can support sufferers and ensure they receive the best possible care. Practical advice is essential on matters such as respite care and state benefits as well as access to physios, speech therapists and dieticians.

The SMNDA is committed to helping people with MND. Fundamental to this commitment is the role of the MND Care Team, consisting of full-time and part-time health professionals who are employed in the NHS but whose existence is dependent on SMNDA funding. Their job is to ensure the right support at the right time, thus allowing people with MND to live as well as possible for as long as possible. Last year, the total contributed by Scottish Health Boards to this £300,000 service was just £9,415.

There is a critical need for more MND Care Team members. The SMNDA is willing to pay half the team costs, but more NHS funding is required. Scientific research will hopefully one day find a cure for MND, but until then every effort must be made to help people who are affected by this devastating disease. We owe it to them and to their families.

• To sponsor Ruth Lister, visit www.justgiving.com/walktheway. Further information on MND can be obtained from Scottish Motor Neurone Disease Association, 76 Firhill Road, Glasgow (0141 956 1077 or e-mail info@scotmnd.co.uk)

http://living.scotsman.com/index.cfm?id=1244682007