Living with MND during the COVID-19 pandemic

Published: April 2020

The COVID-19 pandemic has seen everyone in Australia adapt to a new ‘socially-distanced’ normal. In order to limit the spread of COVID-19, we’ve had to find new ways to keep in contact with family, friends, work colleagues and health professionals.

People living with MND already have extra challenges in their life, and now the pandemic has added another dimension to those challenges. To find out what life is like for someone with MND at this time, Morag Millington, Communications Manager at MND Australia, spoke with Graham Johnson from South Australia, who has been living with MND since 2019.

What does daily life look like for you at the moment, have you chosen to self-isolate at home?

With MND I’m considered a vulnerable person, I’m more at risk of developing serious complications from the coronavirus, so I’ve decided to mainly self-isolate at home to help avoid catching the disease. I live with my wife Barb and our daughter and grandson live next door. They are the only people I really see at the moment. We get our shopping delivered, so we’re not really going out at all, except to exercise.

What kind of exercise do you do outside the house?

I like to keep fit and I want to maintain my strength for as long as possible, so I get outside every morning for a 9km walk. I’ve been walking every single day since my diagnosis – that’s 181 days so far. I used to be a runner, but with MND that’s no longer possible, so now I enjoy a really long walk, there’s some fabulous walking trails near where I live.

I also visit an exercise physiologist once a week, to keep my arm strength up. Fortunately, the place I go to is still able to see patients face-to-face. They’re good at practicing social distancing and have put into place infection control measures so I think it’s worth the risk.

Are all your health appointments still face-to-face?

No. My weekly speech therapy appointment (as part of my NDIS plan) is now done by telehealth – we do it through zoom. I prefer doing the session face-to-face, but telehealth is fine for the time being. I’m looking forward to seeing my speech therapist again in person when all of this is over, but the weekly telehealth appointments are a good way to maintain our relationship and keep my therapy on track.

How do you keep in contact with MND South Australia and your MND advisor?

MND South Australia have been fantastic. My MND advisor calls me every two weeks for a chat, which we do either over the phone or on zoom. MND SA are still delivering equipment as well. I recently needed to get a shower chair, so I called them up and they delivered it in just a few days.

What about staying in contact with friends?

I do really miss seeing my friends and extended family, but we’re all pretty good at keeping in touch through Facebook. I had planned to meet up with some other people in the South Australian MND community as well, but that’s not possible at the moment, so we just phone each other.

Do you still have carers visiting you at home?

I don’t have any carers at the moment, but I do have someone helping us with the house cleaning and the gardening.

As I’m 63 years old, I’m on an NDIS plan, so I can get the help when I need. I feel really sorry for people over 65 with MND, who can’t get the NDIS. I’ve spoken with MNDSA’s CEO, Karen Percival, about this. She’s told me that there are really long waiting lists for Aged Care packages for the over 65s, and that some die before they get to the top of the list. And even if they do get an Aged Care package, it doesn’t really cover all their care needs.

It’s basically just age-discrimination and really unfair. I recently brought up the issue with a South Australian state politician and they didn’t even realise that over 65s can’t get the NDIS!

Apart from spending time with family and exercising, what else do you do to keep busy? 

I really enjoy organising fundraisers and advocating for people with MND! I’m going to organise a big fundraiser for MND South Australia when things get back to normal. I’ve got two South Australian state MPs – Paula Luethen and Tony Piccolo – who have agreed to help me organise it. Paula Luethen actually spoke in the South Australian parliament on 8 April about the lack of state funding for MND South Australia. I was meant to go Parliament to hear her speak, but then COVID-19 got in the way!

At the moment MND South Australia gets zero funding from the state government. We need to change that – I wrote the Prime Minister about it, and he wrote back to me! He said he’d speak to the SA Premier about it – so hopefully we’ll see some action there.

Did you have any major plans that you’ve had to cancel due to the social distancing restrictions?

I had a big family trip to Perth organised in April, so we’ve had to cancel that. It was going to be my last family holiday while I’m still well enough to travel, so that’s a real shame. Hopefully, when the travel ban is lifted I’ll still be able to travel and we can reschedule it.

I’m determined to maintain a positive attitude though and take life day-by-day. We’ll get through this period and there’s still a lot to enjoy in life.

Thank you, Graham! It was wonderful to learn about how you’re managing at the moment and a joy to speak with someone with such energy and love of life.