[Originally published in the Latrobe Valley Express September 7]
Stefan Bradley
THREE years ago, Morwell local Debbie Wells enjoyed playing hockey.
Now, barely able to walk, she requires full-time care as she lives with motor neurone disease (MND).
Debbie, who has raised four kids and is now a grandmother, is trying to raise money and awareness about MND by taking part in the Latrobe Valley Walk to D’Feet MND 2022 next month.
For a number of years, Debbie felt that there was something wrong with her, and her doctor had difficulty figuring out what it was.
“(MND) is really complicated for a GP to diagnose because there’s such random stuff that happens to your body,” Debbie said.
“It’s itching, cramping, muscle loss and all sorts of different things that could have been MS (multiple sclerosis) or fibromyalgia. They usually go to those things first, then it’s not until you get to the neurologist that they go, yep, you got MND.
“We found out on July 15, 2021. The neurologist asked if we had any questions and we said ‘no’, because we didn’t know anything about it.”
Debbie’s husband Robin said the real shock came later on.
“It wasn’t a shock on the day, until we started Googling it and finding out this is not a good thing,” he said.
Debbie said they were also relieved, because they finally knew what was going on. Previously, the only knowledge they had about MND was from former footballer Neale Daniher’s campaigns to find a cure. Mr Daniher was diagnosed with MND in 2014 and is a co-founder of FightMND.
“Neale Daniher is our inspiration,” Debbie said.
“We bought his (fundraising) beanies long before I had MND. Lots of people buy them now.
“There’s about 470 people in Victoria with MND, and over 2000 in Australia. Everyday it’s 2000, because two people die everyday and two are diagnosed.”
Debbie said the disease has affected her lower-body.
“With MND there’s about four different ways you get it. Mine has progressed from my feet and is moving up my body. I can only just walk a little bit, I have no strength in my legs so I can’t push myself up. The last couple of weeks my hands have started to not cooperate,” she says.
“I say it’s like I’m a two-year-old as I’m very clumsy with everything I do. My grandson sits next to me and we’re both at the same stage at getting that spoon into our mouths. He’s doing a better job than I am now.
“Your fine motor skills just drop off. I only walk in my house and to the toilet and back, but someone has to be behind me because I have no balance.
“Somebody is always with me, if it’s not my husband, it’s (my carer) and my kids. They all share it around, so I’m lucky.”
Debbie always has a smile on her face and has tried to avoid letting the disease ruin her high spirits. Her family and friends deal with it differently.
“They have their sad moments, but we work each day as it comes,” she said.
“If I can’t do something, we make an adjustment so I can still fit in with what we’re doing. I’m a pretty happy person so it hasn’t made me too sad, other than the fact that I can’t do certain things.
“Once the MND gets up to your (heart and lungs), you’re not going to do too good. I’m feeling pretty confident at the moment, so I can look to the future a couple of months ahead. We’ll see how we go this Christmas.”
Robin says he has good and bad days.
“But Debbie is mostly cheerful about it so it keeps us all happy,” he said.
Debbie and her expanding team of 24 is excited to participate in the Latrobe Valley Walk to D’Feet MND 2022.
“We set a goal for $500, but it’s climbing up so we may have to update it,” Robin said.
“I’ll be walking with the puppies.”
Debbie is insistent on taking part.
“I’m going to be driving my electric chair,” Debbie said.
“We need more exposure, because people don’t know anything about MND. All my friends are on board and willing to help, but people don’t know about it. We need to get it out there.
“I’ve put my name down for a lot of study groups. We gotta do our part as we’re never going to find a cure if we don’t all pitch in.
“If I can help, even add a bit of time to someone’s life, I think it’s an important thing to do.
“Please support and donate, because the funding allows us to access equipment. My electric scooter, toilet aids. If my OT (occupational therapist) feels I need something, within two days it gets here. It’s really fast.”
Ms Wells described the health professionals dealing with her as “very nurturing”.
“They support you the whole time. When I have an appointment, I may see four doctors at once, because they know it’s hard on your body, so they line all the doctors one after the other,” Debbie said.
“Anything you need, they try to get to you. It’s very supportive.”
Latrobe Valley Walk to D’Feet MND 2022 is taking place at Victory Park, Argyle Street, Traralgon on Sunday October 2.
Registrations open at 10.30 am for a 12pm start.
To donate, take part or find out more, go to mnd.org.au/events/61/latrobe-valley-walk-2022
