Leanne Sklavenitis and Matt Stickland with wife Sarah Stickland (behind)
Can Pilates help someone with Motor Neurone Disease?
Let’s go straight to the source and ask two people that are diagnosed with MND.
First – some background information.
Motor Neurone Disease (MND)
Motor Neurone Disease (MND) is a degeneration of the nervous system which disrupts the communication between the brain and the muscles responsible for enabling us to move, speak, swallow, and breathe.
There is no cure and is life-limiting. Although it progresses differently for each person, the average life expectancy is 2 – 3 years. MND goes by a number of names. MND is most common in the UK, Australia, New Zealand and some other countries, however throughout the US, Canada and other parts of the world it is known as ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig’s Disease after the famous baseball player who died of the disease.
Although MND can affect adults of any age, it occurs most often in those over 50 years old. The lifetime risk of developing this disease is 1 in 300 people, and in 90% of diagnoses there is no inherited genetic mutation (i.e sporadic MND).
There are a number of Australian organisations which work tirelessly to raise awareness and fund vital research, so that one day we may live in a world without MND.
This year, global MND awareness day is Tuesday 21st June – you will most likely be reading this article after this day! This day is designed to raise awareness of this disease – wear those MND beanies with pride.
We have a 1 in 300 lifetime risk of developing MND, and every day another 6 people will be diagnosed with this devastating disease and 6 people will die from it.
As a charity, the MND Association is proud to take a leading role in the global fight against MND – by funding research, facilitating collaboration and raising vital awareness. They advocate for all those people with and affected by MND, giving them a voice to push for a continuing and dedicated focus on research.
So – back to the original question – can exercise help? Lets ask the experts.
My great friend Leanne – diagnosed September 2017 – says YES OF COURSE IT CAN and IT DOES. Exercise helps with dignity, it moves her muscles which helps avoid muscle wastage, it alleviates her pain, helps with respiration, circulation and digestion. It also helps with appetite; gets her outdoors often and contributes to the human need of being social – it helps her feel like her normal self again. You see – the thing with MND is that the person is still the same –mostly the same brain, but the body is not working as it used to. Her body is trapped.
Here is a little information on her journey :
It all started with a fall in a restaurant up a couple of stairs. I remember it so vividly, it was April 2016.
I landed hard on my knee and my first thought was “well that was a bit stupid”! It was a strange sensation and I initially thought I’d done some nerve damage. Possibly there may have been some muscle issues, but it didn’t slow me down. At that time I was living in Brisbane and regularly flying back and forth to Melbourne for work, plus filling in teaching extra fitness classes as I went.
But, I knew that something still wasn’t right. We started with an MRI and a range of other investigations. I was relieved when I got the all clear. Great, everything is healthy I’d thought. But no….It’d taken 3 neurologists to figure out what was wrong. The first neurologist thought it was definitely muscle related. “I’m a PT, I kind of know my muscles!” I told him. And I knew that wasn’t it. The second, well, I don’t actually think he had the balls to tell me what he thought it was.
Back in Melbourne one week in September 2017, I met with a neurology professor who pretty quickly figured things out! “Thank the lord” I thought! But, he was quick to let me know that I was not going to like what he told me… and there it was.
It hit me. There is no cure.
Looking at the symptoms, I could not believe it! An MND diagnosis is a pretty hard thing to swallow being told on average it’s 2-5 years to live… and I’m only 53. People are affected in different ways and no two Motor Neurone patients are the same. I realise that’s what is really tricky for these neurologists, they don’t really know what to do with you. So began my worldwide search for anything that may help to slow the progression.
What an amazing person – – Matt Stickland. Matt is 52 years old, husband to Sarah and father to 3 kids, living in our local community – he is an incredibly friendly, funny and all round GREAT guy to be around – he is interested in how everyone is going, asks questions and loves a chat – he has a smile that lights up a room and is heart-warming. Matt has been diagnosed over 7 years ago – he is sharp as ever and can recall every detail of the terrible news when it was broken to him and Sarah. Matt played football, and was always active – he would often attend local family classes in the hall with his wife and kids, and everyone knew him.
Matt and Leanne love the way they feel included, and treated with respect when they enter any fitness/wellness facility – they love moving/exercising and being social, and they love the conversations they have with others. Other people who frequent these facilities love being in the presence of these two. It generates a lovely atmosphere that I am proud and privileged to be a part of.
Both Matt and Leanne were avid exercisers before and after their diagnosis – exercise was a daily habit, and they inspired others – Leanne in her role as Personal Trainer and Matt as a great footy player and umpire. They did not give up their exercise after their diagnosis – in fact, their resolve was strengthened.
They would love and give anything for their body to obey their clever, intact and sharp, brains again.
What can we do ?
- Move everyday – because you can. They would.
- Wear your MND beanie and send good vibes to all that have this disease.
- If you are in the presence of someone who has any MND – or any disease/disability – talk to them! Don’t shy away, don’t stare and don’t avert your eyes.
- Ask if/how you can help.
- “See” the person – not the disease.
Thanks for reading this article – stay active, keep moving.
PAA Professional Member, Owner/Principal Emerald Pilates VIC