World Multiple Sclerosis (MS) Day, held over the weekend on 30 May, spotlighted the importance of connections for people living with MS, with the theme ‘Connections’.
As the world continues to face the impacts of COVID-19, the theme couldn’t be more relevant and in current times these connections are more important than ever.
MS is a chronic disease that attacks the central nervous system, disrupting communication between the brain and the rest of the body.
With, on average, more than 10 Australians diagnosed every week with MS, there are currently over 25,600 people living with MS in Australia.
Chief Executive Officer of MS Australia, Deidre Mackechnie, says that the theme for the next three years is really important.
“For the first time ever [the MS International Federation] decided to roll out a three year theme which is around connections.
“What we wanted to do was go with a different take on connections for each year so that there wasn’t the same thing three times over.
“So we decided that in the first year we decided to go with ‘connecting to yourself’. We wanted to really talk to people living with MS and talk to them about self-care and connecting to themselves and actually thinking about how they [can] be the best ‘them’ they can be in a world where they are living with MS.
“One of the things that has been identified by people living with MS is that they can experience, like many people living with disability, a higher level of social isolation and loneliness and that can manifest because they are more likely to lose their employment then a person who doesn’t have MS and sometimes it can impact relationships particularly relationships with friends.”
The organisation developed a Connections Hub as a part of World MS Day, as a way for people to share photos of themselves and tips for self-care.
MS Australia also hosted a number of other virtual events including live streams and pre recorded videos.
Next year the focus will be on connecting with family and friends and highlighting the ways that people can connect, whether it be for coffee or brunch Ms Mackechnie saying it’s about breaking down the social isolation experienced by people with MS.
A lived experience of MS
Sharing his journey with MS and the impact that it has had on him, National Advocacy Coordinator for MS Australia Andrew Potter, was diagnosed nearly 31 years ago and lives with the challenges of MS along with his wife and family.
“I started with having a numb finger and thumb and a little blurred vision. Thinking I needed new glasses or maybe I had pulled a tendon in the thumb or finger. During the next 12 months after a series of tests, including an MRI, I was diagnosed with relapsing-remitting MS.
“For me, that has meant over the years over a relatively frequent basis, once or twice a year, I’ve had exacerbations of symptoms whether it be visual disturbance or sensation loss or episodes of cognitive challenge of memory loss and other things…a couple of times, when I’ve not been very well [I have lost] the function of my legs.
“Now after 30 odd years undoubtedly I’m in what’s known as the secondary progressive stage of MS where some of the symptoms that I have don’t retract or recover as well as they have, so I am left with a few residual things that remind me every day that I am still living the challenge of cohabitating with MS. For me, it has meant things like fatigue levels are quite a challenge.
Despite the journey that Mr Potter faces he says that he is incredibly lucky and that it is “terrific” he has the right medications to manage his symptoms to keep him on the “up and up”.
“I have to make the point I am also very lucky when I think about myself in that I know a lot of other people with MS who have been diagnosed at the same time, or fewer years then I have, and I am fortunate that I am doing so well.”
Mr Potter says the theme of World MS Day highlights the issues people living with MS face.
“The theme of World MS day…highlights some of the issues we face in relation to being a little disenfranchised through the general community. When you are diagnosed it is sometimes challenging to socially interact or stay at work or to do the usual things that you used to do before you were diagnosed.
“Over time, you feel like you become isolated, and it can be quite lonely sometimes. So highlighting that to the general community for us and promoting the fact that today particularly it is easier to access community using technology it is a great opportunity.”
COVID-19 highlights the importance of connections
Social isolation remains a challenge for many, including those living with MS, as the world continues to feel the impact of COVID-19.
For people living with MS, a number of services are likely to have been impacted, and face to face communications is limited, says Mr Potter.
“A lot of us actively participate in peer support groups where other folks with MS and ourselves get together on a regular basis. We provide psychosocial supports to each other and information sharing about our journeys and the different treatments that we’ve had and during the pandemic, all that came to an absolute halt…
“It was not just with peer support groups but with things like our health professional team, including doctors, neurologists, pharmacies, Allied Health professionals we might use, you name it.”
Ms Mackechnie from MS Australia agrees adding, “I think [COVID-19] has highlighted the importance of connections for people with MS, but I think it also has highlighted how easy it can be to become socially isolated people who are not living with MS. I think it has been a bit of a reality check for many people in terms of remembering the importance of social connections. We sort of take it for granted.
“I think it’s made people not living with MS or not living with disability actually remember to make that bit more effort to actually connect with other people.
“I would be encouraging everyone to remember that being at home doesn’t mean you need to be isolated.”
Mr Potter says that MS can be isolating and now more then ever technology can be used to bridge the gap of isolation.
He adds, “You can be managing very well something like MS, but it can be exceptionally isolating and a lonely journey sometimes, and that’s certainly been the sense the last few months for men and [others] that I’ve been in contact with.
“Whether it is with partners, with family, with work, with your health professionals, we all need those solid relationships to keep ourselves on the up and up, motivated and healthy not only physically, neurologically but also psychologically.”
For the latest updates on how COVID-19 is impacting the disability sector visit our dedicated COVID-19 information page.
What are your tips for staying connected with those around you? Tell us in the comments below or send an email to [email protected].