Heather was a successful radio producer and communications consultant before she was diagnosed with bulbar MND in 2017. While initially only her speech was impaired, she gradually lost the use of her limbs and fingers and is now using a wheelchair to move, and an eye-gaze tablet to write.
She says the impact of her diagnosis has been ‘devastating’.
“We’re living with grief and uncertainty every day,” she says. “We’re all grieving in our own way. MND is an extremely cruel disease that could strike your family or friends any time. No known cause, no cure yet. And the number of people getting MND is increasing every year.”
However, she says the efforts and support of all those raising much-needed funds and awareness for MND research provides some comfort.
“Having a chronic disease can be a very lonely experience even if you’re surrounded by love and support. It’s less lonely when you know lots of effort is going into finding a cure and Aussies are aware and joining the battle” she adds.
In her own battle with MND, Heather has still found avenues of hope – seeking joy wherever she could find it.
“When she diagnosed MND, my neurologist suggested thinking of it as ‘living with MND’. Emphasis on living. Because my version of MND started with slurred speech rather than weak limbs, I took up ballroom dancing and went travelling with my family,” says Heather.
“For the first two years I could still live independently. When I got the wheelchair, I found a writing coach and delighted in typing stories and poems. When my fingers stopped working last year, fortunately I could borrow an eye gaze tablet. Instead of fingertips tapping on the keyboard, the software tracks my eyes as I look at each letter. I can chat, email, text with an eye gaze tablet. Watch TV, movies, and search the Internet. I relish this freedom even though I’m paralysed.”
Technological advancements may have helped ease some of the challenges that come alongside living with MND, yet it is only through continued investment into clinical trials that effective treatments, and ultimately a cure for MND can be found. It is for Heather, and all others who suffer from MND that we continue our fight, and we thank her for sharing her story with us.
As part of our partnership with Coles, we’ve been speaking with people across Australia who have been personally affected by MND, documenting their stories and experiences to shed a light on just what living with this disease is like. People like Heather McLean.
