MS: Busting the Myths
My darling mum, Nicky, has MS and has had it for over ten years. She is one of the strongest people that I know, I mean she successfully raised two girls (myself and my sister) and I can 100% say that we were little terrors. She has been running her own business with my father, Kevin, for the past three years. The business has given her many challenges and really tested her on a personal level while dealing with progressive MS. She also runs the social media side of the New Zealand Disability Support Network and somehow still finds the time to be a supermum.
My mum never gives up and doesn’t let anything keep her down for long, not even Covid. I think she would be an incredible person to help spread awareness for MS because she is so positive and inspiring. She has a feisty personality and makes the whole room light up with her wisecracks and sharp sense of humour. Her MS journey has not been an easy one by any means but she always finds a way to come out on top.
Before her diagnosis, my sister and I travelled around the world with my amazing parents to so many different places. By the time I turned 18, I had been to over 15 countries and experienced every adventure you could imagine. We have always been an active family and use our holiday time to exhaust ourselves with new experiences rather than relax on the beach. Mum’s diagnosis came as a big shock and a whole lot of uncertainty as none of us really had any idea of what it involved. Mum and dad were amazing at explaining everything to us and answering any questions we raised – no sugarcoating! While the was a scary new reality not only for mum, but for us as a family, we didn’t let it slow us down for long. We still travelled to new and exotic places right up until Covid hit. We had to adjust how we travelled and the way we did things because with progressive MS, symptoms slowly get worse over time. Some parts were particularly difficult to adapt, like beach holidays or going on hikes. Sand is not your friend when you are struggling to walk but we took it upon ourselves to drag mum along with us, sometimes quite literally, and continue to experience new adventures with a more creative outlook.
Living in a rental house comes with challenges that non-disabled people might overlook. One such issue that has been a big concern is stairs. Mum gets exhausted by the end of the day due to her MS and sometimes climbing 16 stairs to get to bed can be overwhelming. As her favourite daughter (this is highly contested by my sister), I took this personally because if I can help make her day easier then I will do anything possible to make it happen. So over the 2019 lockdown, I decided to take up weightlifting to build up some serious strength. This would allow me to help mum out even more on the bad days where her MS was flaring up. I am so glad that I did! Mum’s MS progressed quickly during lockdown and the next 6 months that followed, almost to the point where stairs were impossible for her to tackle daily. One night, I decided that I would take the stairs out completely for her and just piggyback her to the top. We laughed the whole time and almost fell over once or twice but it worked. With MS, every little bit of energy helps and helping her with the stairs meant that she could save her energy for other things that she wanted to do instead. This is just one of the ways my family have adapted to help make mum’s life easier and definitely a lot more entertaining.
My mum has the best advice and she can always find a solution to any problem that I bring her. As her daughter, I know that I have a good chance of developing MS during my life and this is something I have had long conversations about with her. She tells me every time that it’s not a disadvantage unless you let it be.
She has some advice for anyone living with MS too,
“ I was never easy to live with, now I’m just worse! I have most of the symptoms but some of them, like brain fog and selective hearing, could well be attributed to old age or just sanity saving! It is difficult to get around but fortunately the girls are now adults and able to do everything for themselves. They are a great help, we have even figured out how to get a manual, non foldable chair into their cars. I can do pretty much anything, it just takes me longer and I have to plan better. It’s exhausting fighting the MS so don’t. Acknowledge the symptoms, work around them, and never apologize. Fall over, have a bad day, hate the heat and the wheelchair, but always get up and show up.”
Shannon