
7 minute read
Jonathan's MND journey - From Canada to Australia
Jonathan McCowen (or Johnny) is 41 years old and was diagnosed with MND in September 2021 at the age of 40. He has two daughters Darcy (almost three) and Riley (10 months old). He’s been married to Sherie since August 2018. We recently spoke with Sherie about Johnny’s MND diagnosis and the impact it’s had on their family.
Johnny’s an electrical engineer and he accepted a big promotion as a regional director which saw them move to Canada. They’d been living in Vancouver for three years prior to his diagnosis.
He noticed a change in his speech in July 2021. His role saw him having many meetings and he was having trouble pronouncing certain words and had to slow down for people to understand him. People were even asking “Is everything alright Johnny, because the way you’re talking is a bit different?” He’d also been seeing a chiropractor and they noticed that his dominant right arm was weaker than his left arm. He saw a GP and they recommended that he go to hospital for tests. Within days of the hospital tests the diagnosis came back as MND.
Sherie was six months pregnant with Riley at the time of diagnosis. She described how the news was delivered, ‘They asked me to sit down. We had Darcy, a very energetic little girl. I remember Johnny sitting in the bed and that look in his eyes that I’ll never forget. They told us they had bad news for us. They tested everything and there were a few test results they were waiting on, but they didn’t think they would change the diagnosis. They told us they think it is ALS… I thought “I’m getting sick” and I ran into the bathroom and I threw up and Johnny ran after me. Darcy’s screaming and crying. And Johnny’s like “Don’t worry. We are going to find a way. This is not the end. I’m sure that there’s something we can do” and we came out and Darcy came to me and we were all crying. It was a very tough moment for all of us.’
They had hope and thought that they would try everything available, and sometimes this meant spending many thousands of dollars. They tried alternative treatments. Johnny flew to LA to see a doctor who was doing stem cell treatments. They tried Chinese medicine. They tried homeopathy with a doctor in New York. Nothing worked and Johnny reacted poorly to Riluzole.
MND doesn’t only impact on the person diagnosed, it also affects family and friends. Sherie told us that one of Darcy’s first sentences when she started talking was “Is Daddy OK?”
Johnny and Sherie have a loving relationship, they’ve never even had a fight. Sherie told us that they ‘had lots of plans for our future. For our little family… and when this happened I started having grief for the life I had, for the life I was going to have. I went through a lot emotionally. I’m looking at my person, my rock, my best friend gradually deteriorating and moving forward to the end of his life and it’s just so heartbreaking. Also, I’ve got two little girls and I feel the weight on my shoulders that I’ll have to look after them by myself. I’ve been single-mumming basically since we got to Australia. Johnny hasn’t been able to do anything. Obviously, if I have to make any decisions, he’s still there, his mind is working 100%, he’s an intelligent person who always gives me the best advice. He’s the person who’s got my back if I need anything. He’s so kind, he’s so caring.’ She added ‘It’s the toughest thing I’ve ever been through.’
Having a new born baby and toddler along with Johnny’s diagnosis wasn’t easy. Sherie told us that they ‘have an army of supporters’ helping out in many ways. While they were in Canada they even had people flying internationally to help out.
They had been planning to move back to Australia at the end of his contract, but Johnny’s diagnosis hastened that process.
Prior to moving back to Australia, one of their friends, Brian was in touch with MND Queensland to start lining up the supports that the family would require.
Sadly, Johnny’s symptoms have progressed quickly. Initially he was told he might be using a cane in six months, but he was in a wheelchair in that time. Johnny can’t speak or move anymore. He communicates with eye-gaze technology from MND Queensland’s Equipment Hire Service.
Along with equipment, MND Queensland has supported Johnny with NDIS pre-planning, Support Coordination, Occupational Therapy, Speech Therapy and more. When asked about our support Sherie said ‘First of all, I have to thank Jason. He is so amazing! He is very knowledgeable. He’s very experienced. He’s very caring and he’s been looking after us. We couldn’t ask for more. The whole team are brilliant! There is nothing we’ve asked for that hasn’t been delivered to us in a good manner of time and also the best solution they could provide for us is always there for us. We are living as close as we can to normal life and we couldn’t do it without MND Queensland, for sure. All of the staff, they are very experienced and very knowledgeable… It’s important to them to be able to deliver the best they can because they always ask questions, they want to make commitments. Even the solutions they delivered to us last month, they might not work anymore, so they always reach out. We have amazing support from MND Queensland!’
When asked what she’d say to our supporters that make our work possible Sherie said, ‘I’m just so thankful! While we have the NDIS, the funds are limited, there’s just so much we can spend, if we didn’t have the chance to hire equipment we’d be in trouble. If we didn’t have the equipment that helps Johnny... he couldn’t communicate with us at all if he didn’t have that eyegaze equipment which costs over $20,000, so we wouldn’t have access to that. If Johnny couldn’t communicate, how could he let us know how he’s feeling? He can’t even scratch his face. If he’s in pain, he couldn’t let us know. Johnny used a board before he had access to the eye-gaze and he told us that he’s “feeling trapped”. All of this equipment is helping someone like Johnny to feel more comfortable in the last months, weeks or years of his life and it’s made everything easier for our whole family as we want the best for him and we don’t want to watch him suffer or be uncomfortable.'
With two young daughters, Johnny’s concerned about his family and who is going to provide for them. Their ‘army of supporters’ have been raising funds to help with family’s future with over $700,000 raised so far. He’s creating a memory box filled with letters for each of the girls for special occasions such as birthdays, graduations, weddings… Sherie said ‘at nights he sometimes doesn’t want to take his sleeping pills as he wants to write letters for the girls.’
A change that’s come from the diagnosis is Sherie’s outlook on life sharing ‘I try to live in the moment, not to think about the future, only plan for the things I have control over. Don’t think about the things I have no control over, because, what’s the point? I’m going to lose this moment for the future I have no control over?! Time is just so precious for us at this stage.’