Speech therapist offers unique insight into MND

Ruth Porter is determined to continue riding horses as long as she can. Picture: Alistair Linford
Ruth Porter is determined to continue riding horses as long as she can. Picture: Alistair Linford
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It was when she began to notice her speech slowing with tiredness that Ruth Porter first knew something was wrong.

A language therapist, she had also become aware of her gait and the difficulty she had walking in a straight line or running for a bus.

After returning from a 2013 holiday in New Zealand where she had struggled to mount her bicycle, Porter, 67, visited a neurologist who initially suspected she had a brain lesion.

But Porter knew better. Her training as a speech therapist and her knowledge of neurological conditions led her to her own conclusion: motor neurone disease.

MND, a rapidly progressing illness which stops signals from the brain reaching the muscles, is a hugely feared but also widely misunderstood condition which is diagnosed in 200 people each year in Scotland. More than half die within 12 months.

Porter, who was diagnosed in 2014 shortly after moving to Edinburgh, is determined to raise awareness of her condition before it’s too late.

Born and raised in Northern Ireland, she spent her life working with others across the world to improve their speech and language skills, including most recently as an English teacher at the Berlitz Language School in Edinburgh.

It is a cruel irony that her greatest fear about living with MND is losing the ability to communicate verbally.

“I so enjoyed my work as a speech and language therapist providing intervention to children and adults with speech, language and communication needs,” she said.

“There are a number of challenging symptoms with the onset of MND, however, right now, the most challenging symptoms for me are losing independence due to my difficulty in walking, and losing my speech.

“Verbal communication becomes increasingly difficult as symptoms progress with MND, due to increasing weakness in the tongue, lips and vocal cords, in addition to breathing difficulties.”

Tomorrow sees the start of MND Awareness Week, which hopes to challenge some of the misconceptions about the disease.

Despite being badly understood, MND has received increasing levels of media coverage in recent years due in large part to the campaigner Gordon Aikman, who died of the condition aged just 31 after raising more than £500,000 to help fund research into a cure.

Others to have been diagnosed with the illness include former rugby international Doddie Weir and ex-Rangers player Fernando Ricksen.

Porter, one of more than 450 people living with MND in Scotland, said the illness is routinely confused with either Myalgic encephalomyelitis (ME) or Multiple sclerosis (MS).

She is unsure of her life expectancy, but said her symptoms have continued to “march on relentlessly” since her diagnosis.

“Talking is now very effortful and on occasions, some find my speech difficult to understand,” she said. “I can no longer walk on my own, so I rely on friends to get out regularly.”

But despite the disease’s progression, she is determined not to give in, continuing with her passions, including horse riding.

“I ride with Ravelrig Riding for the Disabled Association in Balerno and continue to go on riding holidays,” she said. “I’ve just returned from a week’s horse riding in the Azores.”

She hopes to be able to drive a carriage when riding a horse is no longer possible.

Craig Stockton, chief executive of MND Scotland, said: “This MND Awareness Week we launched a new campaign to tackle the misconceptions and stigmas around MND and I would like to thank Ruth for bravely sharing her story.

“People affected by MND across the country have been speaking out about their experiences and we hope this will help more people understand the disease, its emotional and physical impact and how we, as a society, can treat people with MND, with the dignity and respect they deserve.”

For now, Porter’s training as a language therapist has helped her develop compensatory speech strategies, such as speaking slower or stressing the ends of words.

MND may eventually rob her of her voice, but she will remain determined to be heard.

Visit mndscotland.org.uk/MNDAware for more information.