A DRUMQUIN woman who has spent the past 13 years supporting Motor Neurone Disease (MND) sufferers in the North West has urged others to undertake a similar volunteering journey.
MND is an uncommon condition that affects the brain and nerves, according to the NHS. It causes weakness and gets worse over time. There is currently no cure for the disease but treatments that make living with the condition easier are available.
Some people with MND live with it for many years but it can significantly shorten life expectancy and sadly leads to death. It usually affects people in their 60s and 70s but can affect adults of all ages.
At a recent conference in Derry to mark MND awareness day, Patrick Malone, policy officer with Motor Neurone Disease NI (MNDNI) revealed that Nortthern Ireland as ‘virtually no resources’ for MND sufferers and has an acute lack of assistance, from the diagnosis stage to help with managing the affliction.
At present, the only neurological doctor in the North capable of diagnosing cases MND is Professor Karen Morrison, on the verge of retirement.
Eleanor Smyth is one of the few ‘associated volunteers’ that help people with MND in the north-west.
The Drumquin woman became involved with MND sufferers through her work as an occupational therapist (OT) in the Omagh district.
Speaking to the UH, she said, “While working as an OT, I became very acutely aware that people with Motor Neurone Disease were very much in isolation.
“Illnesses such as Multiple Sclerosis or cancer are much more visible and you’re more likely to know someone with those diseases, whereas MND sufferers aren’t as ‘visible’ or numerous. I wanted to offer my services as a volunteer to help people who are suffering from a lack of provision and visibility in society.”
Eleanor began helping MNDNI as an ‘associative volunteer’ which meant that she’s tasked with supporting MND sufferers in the north-west, dispensing advice on how and where they were able to access the scant resources available, or something as simple as offering a friendly or sympathetic ear.
When she first started, Eleanor asked to be put in touch with people within a 20-mile radius of her Drumquin base, but soon found herself overwhelmed, dealing with people in Tyrone, Fermanagh and Derry.
This is a major reason she backs the call for more volunteers.
Eleanor continues, “MND can affect those diagnosed with it very quickly; physically, mentally and certainly emotionally.
“The health service isn’t often able to make the necessary provision for them; I’ve heard of people waiting for up to three months for a diagnosis. Also there have been times where support aids are required which, thankfully, MNDNI has been able to provide with no expense to the patient.
“It’s an issue which needs to be rectified and soon.”
Asked about her routine as an associated volunteer, Eleanor commented, “I have a roster of people within the area with whom I would deal, ranging from two or three or sometimes as many as six or seven; it changes quite rapidly.
“I like to get in there while the patient is still able to speak; it helps to build up a rapport, and would ring them every three weeks or so, to see how they’re getting on and to offer advice for any potential issues.
“On occasion, I may visit the person, depending on where they are but this step is very much dictated by them; my visiting someone is solely at their discretion.
“If they don’t want to see me then that’s their prerogative.”
Dealing with anyone with a debilitating disease is challenging, and while Eleanor admits she isn’t immune to that, her work is something she enjoys.
“It is emotionally challenging, and also very humbling, that they’ve let a complete stranger into their lives at this moment.
“It says so much about the character of the person.
“I find that most MND patients like people who treat them as individuals and I would hope they see me as a friend and confidante.”
Loss and death are unfortunate by-products of dealing with MND sufferers.
Eleanor says that she has dealt with losing people throughout the years, admitting “it doesn’t get any easier.”
“Of course, this takes a toll on us as well and there are services available for both the families and support workers following a death.
“MNDNI offers help to families up to a year after the patient has passed away; some take them up on the offer and some choose not to, which is OK. No-one knows the journey better than those who have gone through it but the services are there if needed.”
Eleanor admits her journey as an MND support volunteer may be coming to an end, which is why she is appealing for people to follow in her footsteps.
“Honestly, I feel like it’s nearing the end of my time in the role and I would love people to row in behind me; the need for more volunteers is so obvious.
“However, I’ll keep going, helping where I can.”
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