I think he was diagnosed when he was 20… 25… and I didn’t meet him till he was 27, so I just knew that his gait was a little bit different, and then we were told when it got serious, he was told what it was. They told us about the diagnosis, but the problem was no one knew what would happen, so I’d ask questions to the doctor and the specialist, what’s going to happen, they could not tell me. So it was just going day to day and it was a slow progression disease, so it’s as the time went on, just little things over the years. He might go four or five years and he’s the same, and then just have a fall and then it’ll set the balance off again, and so he’d get further into his disability, and that went on probably 25 years and then he got into the wheelchair so it was a very long progression of his disability.
Rose is the wife of Gerry, a farmer. In 1975, Gerry was diagnosed with Muscular Dystrophy (MD).
“It has been a long slow progression with Gerry’s disease. Early on before we discovered self-management, we had strangers coming into our home and it felt like a privacy invasion. Gerry was training hundreds of different people and we got sick of it. Then we joined LMW and took the management over ourselves and everything changed. I get support handling the paperwork and payroll which helps a lot.”
“Now Gerry chooses his Support Workers but I’m involved too, and we do the interviews together. Because it always involves people in our home, this is a decision we both make and whoever we choose always needs to align with our values. We build rapport with our Support Workers and get to know them. I don’t hover and let them do their job. If there’s an issue we discuss and work it out together.”
“We have a good system that runs well, and I trust them 100% which is wonderful.”
Advocating for accessibility
“Our persistent efforts led to a victory when our local post office eventually installed a ramp. Gerry also provided valuable insights to our local Council during the building phase of a new public carpark, ensuring it was accessible for everyone.”
“We yearn for better community facilities and more thoughtful planning from developers when building new homes. For example, our friends always have to visit us because there’s no access for Gerry to visit them. Being an ex-pilot, Gerry dreams of spending more time at our local Aero Club, but despite our letters and advocacy, little has changed. Even the new wing at our local hospital has its share of accessibility challenges. With our lived experience we’ve learned that we can’t fight every battle, so we choose the ones that matter most.”
Gerry
Gerry: One thing the other day and it nearly bought tears to eyes. I only done it a couple times, tuned into the radio out here, and blow me down, I didn’t have to ask Kerrie, she came out with the radio. I thought how sweet, how good is that. I didn’t have to ask, it was great, you know.
Kerrie: It’s just the simple things isn’t it, it’s only the little things like, yeah. Just to watch, yeah.
Gerry: She reads me well, and that’s really great, you know. Kerrie’s very good at it. And the clothes you want to wear the next day, or the toothbrush, put the toothpaste on the toothbrush – she’ll do it. And then if I’m struggling, she’ll push the little lever back here, they’re pushing me back in the chair when they go, lifting down, all the little things that I haven’t got to ask for. It really is great, it’s beautiful because it makes my life easier, makes her life easier and you’re not asking them all the time.
Rose and Gerry (video)
We’re both advocates for Gerry’s disease, but I’m more into the literacy side. I do all the paperwork, and we’re trying to get some sort of funding for him. None of the doctors could tell us anything, no one could. But we did hear from someone, that there was some funding available. In those days it was called Attendant Care Program, and we’re talking about 15 years ago. It took 2 years to get, but I had to write to all the members of parliament; state, federal, even the local. And we eventually got it after 2 years, so both of us are persistent. Gerry’s the chatter, he talks on the phone. And I do all the letters, yeah, so that’s how we deal with it and we still do.
Kerrie and Gerry (video)
Hi, my name is Kerrie, and I’ve worked for Gerry around just over 3 and a half years now. I would help Gerry through his daily activities, to having his shower and just even to making sure that all the things that I think he’s going to need throughout the day are within reach and accessible before I leave. Obviously I help Gerry with all the physical parts of his life, and in helping Gerry be able to live his life the way he likes, and to be able to participate in the things that he likes to do. Something as simple as making sure the land, the newspaper is easy in reach. Gerry, you know, loves to land and his nostalgia, and he keeps all these things together. Just making sure, Gerry likes his things done in his own particular way, which is great, we all do. So just making sure that he’s comfortable with the way that we run the day and how it’s done, and that basically he is happy and lives his life when I’m gone.
