7 minute read
Living with MND - Kelvin's Story
Kelvin loves nature, motorbikes, travelling as well as a good laugh. He’s ridden around Australia twice on his motorbike and before his MND diagnosis he was a National Parks Ranger for almost 35 years.
In 1987 Kelvin and Libby married and a few years later they started their family with the birth of their daughter Erin and then came their son Seth. They’re now also grandparents to lively young Landon.
Libby describes Kelvin as “honest, charitable and very safety conscious.” She went on to add “He’s never a whinger. What he’s going through, you know, I could say ‘poor me’, but I look at what he’s going through and not complaining and making jokes about it, and making other people feel more comfortable about it.”
When Kelvin started having trouble with fasciculations in his arms and legs he saw his GP and was sent for tests. Kelvin is a childhood cancer survivor and his cancer treatments left him with some ongoing health issues which he’s had to deal with over the years, so they initially thought that the tremors may be caused by some of the medications he was taking. He mentioned to his doctor that his father passed from MND and that’s when they focussed their diagnostics on eliminating everything else before coming to the conclusion in July 2019 that Kelvin too had developed Motor Neurone Disease.
Along with his father, Kelvin has also lost two cousins to MND. Having familial MND in their family is now a concern for Kelvin’s children who are investigating genetic counselling to see if they carry the faulty gene that could lead to them developing MND too.
When asked how living with MND has impacted him, Kelvin said it’s like “taking a little bit of your life every day.” He gets fatigued very easily nowadays and has some swallowing issues. He has one good knuckle which he uses to unlock and operate his mobile phone, but this is becoming increasingly difficult for him too. He misses doing things he used to such as bushwalking, riding his motorbike, servicing cars, household repairs and the things most of us take for granted. Plus the little things like being able to brush and floss his own teeth, putting on his shoes and scratching his own ear that Kelvin misses. ‘Scratching anything or just putting my shoes on. I don’t wear a lot of shoes these days, slip-ons are the only ones I wear.’
Sadly Kelvin’s MND diagnosis means that he had to give up his job and that he’s no longer able to ride his beloved Harley Davidson which sits in the garage, something he’s reluctant to give up. Camping was a passion that Kelvin and Libby shared, but this is something else that he’s had to give up due to his decreasing mobility. Libby was a schoolteacher and had to retire early to become Kelvin’s full-time carer.
They miss camping under the stars, but they have enjoyed a couple of getaways in motels, which has presented it’s own difficulties. Despite all of their checks and assurances that venues are disabled/ wheelchair-friendly they’ve come across issues that have made holidaying tricky too. Kelvin still enjoys getting out of the house though, but as trips away become more difficult, he’s enjoying small things like scooting to the park down the road to enjoy nature.
Kelvin and Libby connected with MND Queensland very early on in their MND journey and told us about how they valued the support of our team. “In the early days, it was help filling out a lot of forms and things. The big one was the NDIS application, so that was a bit of a nightmare for us. I found it really frustrating to be filling out all these forms. So it was much-appreciated, filling out or helping us fill out all these things and give us examples of goals to fill out for the NDIS applications, etc. In later times, helping us understand the process through NDIS. We got plan management stuff as well.” Kelvin said.
Jason Russell is Kelvin’s Support Coordinator at MND Queensland. We asked Kelvin how Jason works with him and he told us “Jason helps in all sorts of ways. If we’re having difficulties with some things or need something arranged, he’s more than happy to step in and keeps consistently on it.” Libby added “Jason is good, though. He’s often saying, ‘Just let me know what you need and I’m there to help. That’s my job.’ So he’s really good that way.”
They’ve also accessed our Occupational Therapy Service and Kelvin told us that our OTs have helped with “Things like various large modifications to the home, things like that ramp out the back. OT help with sorting out the quotes etc. Then bathroom modifications was another large one. A couple of OTs involved in that… vehicle modifications in between. There were a lot of the littler things too, a lot of wheelchair help.” Kelvin went on further to add that the OTs “Pointed us in direction of some things like modified cutlery, what’s available, what might help, what seems to be a waste of time.”
Kelvin has also accessed our Equipment Service telling us “Equipment hire, quite a lot of it. The Merits (folding wheelchair) originally, then later a power wheelchair. A whole range things … A cough assist machine.”
Voice Banking is another service that Kelvin has accessed and he’s relieved to know his banked voice is there if he needs it.
We asked what they thought about MND Queensland being the only State Association in Australia not to receive any State Government funding and Kelvin said “I think it stinks!” to which Libby agreed. Kelvin added “I think they should be receiving funding, within reason. Any of those bodies that help people with some form of disability, if they’re not-for-profit charities, which you guys are, I’ve got no problem with it.”
Libby also added “They provide a good service, don’t they? Without Jason on our side, we’d be flailing. He does all the groundwork and it’s wonderful.”
They are very aware that MND Queensland is a charity that relies on community support to provide many of our services and their son-in-law Liam (who you’ll read about in this issue) recently did his second online streaming fundraiser for MND Queensland. When asked what they’d say to our supporters Kelvin responded “Thank you very much. There’s the monetary side of things, but it’s also the awareness as well. I know a lot of people, like just an extended group of friends I know who ride bikes. I mean, there’s got to be well over 100 of them through different areas. I guarantee 95% of them didn’t know anything about MND. Now, a lot of them, they know it now from me. But some others have learned more through people like Liam, too. He explained it on his stream very well.”
When closing the interview, we asked if there was anything else they’d like to add and Kelvin told us “There’s one other thing. Something I believe in is that, unfortunately, I’m going to be remembered by some as the bloke who died of MND. And I just think people put too much weight in how someone went out of the world and not how they lived within it. I’ve never been one to believe in making the great retirement speech because you’ve already been there for umpteen years and if you haven’t said the right things or lived the right things… It’s not about what’s written on your tombstone, it’s about the friends and loved ones you leave behind and hopefully I’ll be remembered as the funny one or the witty one or whatever. The one that bought a smile or whatever. I mean, in there it’ll be ‘he died of MND’, but that’ll just be part of it.”
