Walking the MS journey together

The annual MS Walk + Fun Run was held last Sunday at Melbourne’s Albert Park Lake.

Every year, over 12,000 people participate in the event over 3 cities, to raise awareness for what is commonly known as an ‘invisible disease.’

Multiple Sclerosis affects 23,000 Australians and over 2 million people worldwide.

It is a condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves.

Whilst the disease varies depending on which part of the nervous system is affected, and to what degree, some symptoms include: difficulties with motor control, fatigue, other neurological symptoms, continence problems, and neuropsychological symptoms.

There are three different types of MS, including:
Relapsing-remitting (RRMS) – characterised by partial or total recovery after attacks. It is the most common form of MS. 70 to 75% of people with MS initially begin with a relapsing-remitting course.
Secondary progressive (SPMS) – a relapsing-remitting course which later becomes steadily progressive. Attacks and partial recoveries may continue to occur. Of the 70-75% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years.
Primary progressive (PPMS) – a progressive course from onset. Symptoms generally do not remit. 15% of people with MS are diagnosed with PPMS.

At this stage, there is no cure but there are a number of treatment options to manage symptoms and slow the progression of the disease.

Mother and daughter Raelene and Sheridan Harbour participated in the event this year – both living with the relapsing-remitting form of Multiple Sclerosis.

Mother Raelene (left) was diagnosed 20 years ago in 1997, daughter Sheridan (right) in 2013. Photo source: Harbour Family

“I have ‘lucky MS’ – I don’t know what that means but I have it!” says Raelene Harbour.

In many cases, this form does not have a major impact on the lives of those diagnosed; Raelene hasn’t had a relapse on 20 years.

“The only thing it has stopped me from doing is riding a push bike – I don’t have the balance for that – it’s my right side that is slightly affected,” says the mother.

“The heat is something that I suffer from so as long as I keep my body temperature down, I can pretty much do everything. I just don’t choose to do it all in one day.”

However, for daughter Sheridan, it has proven more difficult to live with the disease at such a young age.

“It’s hard looking around at friends, they can do things that sometimes I can’t. When you’re working full time, owning a home – you don’t really get that social life because your weekend is recovery. It can sometimes get you down a bit.

“I’m pretty positive minded and have a good role model,” says Sheridan as she exchanges a giggle with her mum.

For both women, they described their diagnosis with MS as ‘utter relief.’

Raelene Harbour says initially she had been told she had a stroke, and was being treated for that which made her depressed as it meant she couldn’t drive.

In Sheridan’s case, she says, “I always knew something wasn’t quite right – I’d look at mum and think I’m exactly like her.

“The doctors sort of think you’re crazy when you go in and tell them you think you have something, so it was a pretty long journey to find an answer.

“[When I was diagnosed] I was smiling because I had an answer and then reality hit.”

Raelene describes the moment she found out her daughter was also living with MS as “absolutely devastating.”

“20 years ago they told me that it wasn’t hereditary – and they still say its not – but we obviously carry that gene.”

Raelene hoped that research and development for MS would have vastly improved since she was diagnosed.

“[Researchers] keep saying ‘we’re close to finding a cure’ – I don’t believe them – they still can’t tell us why we have it – they cannot tell us how were going to fair,” says Raelene Harbour.

“I don’t know what Sheridan’s future holds as I don’t know what mine is, but as I say to her just take every day as it comes and don’t take anything for granted,” says Raelene.

The women reflected on their knowledge of the disease prior to diagnosis. Raelene says, “Naively, all I knew was Betty Cuthbert in a wheelchair – I didn’t know anything about it!”

The mother says the event helps to raise awareness.

“I still run into people now at work and they don’t know what MS is. I was like that 20 years ago – that sort of shocked me a bit!”

For Sheridan’s generation, many people were exposed to the MS Readathon at school. “So most people were bought up with awareness.“

Upon reflecting on the walk, Raelene says, “I probably wont do it again – and this may sound really silly – but for me this is the realisation that I really do have MS – I don’t walk 5km on a daily basis and so this was a bit of a slap in the face for me today.

“It was a tick off my bucket list, it was very hard to do, but for [people without MS], the equation would be them running around [the lake] twice, at full speed.”

Sheridan says, “I like coming every year to support everybody else – it is an achievement for myself to see if I can better each year – how I feel towards the end.

“The first time I could hardly walk and I was in tears and I can get through it now okay.”

Both women agree that the hardest part of living with the disease is that it is invisible.

“Most people look at you and think you’re young, you’re fine you’ll be right!” says Sheridan.

Raelene recounts, “I said to Sheridan today, I wonder how many of those [at the event] have MS and are like us – because for those people, they need a gold medal – it’s like an Olympics.

“You are struggling to walk, your brain is telling you one thing and your body is telling you another.”

Donations for the cause are still welcome online at https://www.mswalk.org.au/index.cfm?fuseaction=donorDrive.donate.

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