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Meet Karryn

As Karryn Pascoe prepares to mark 10 years since her first episode of Multiple Sclerosis (MS), this year’s MS Moonlight Walk isn’t just an opportunity to connect and give back, but a statement of intent.    

“One of my favourite quotes I try to live by is, ‘sometimes you have to let go of the picture of what you thought life would be like and learn to find joy in the story you are actually living’,” Karryn said.  

 “Day-to-day I try to be positive about my diagnosis, but I believe putting my own story out there and being raw and authentic with my experience is important to raise awareness and fundraise for support, research and hope!  

“By sharing my journey, I hope others learn more about this often invisible but debilitating neurological condition but also see how the donations raised through the MS Moonlight Walk helps to support people living with MS.” 

While MS has impacted on almost all areas of Karryn’s life, it’s not just the physical limitations that have taken their toll, but the knock-on consequences for her mental health. 

“It’s challenging to come to terms with the loss of functioning. The uncertainty around the future is overwhelming some days but, with the support of family, friends and the MS community, I have learnt ways to adapt my lifestyle and shift my mindset,” Karryn said.  

 “The thing I have learnt most importantly is to rest when I need to before my body gets to the stage of exhaustion and find gratitude daily in the small things.”  

Although now 10 years into her MS journey, Karryn’s connection with MS Queensland actually spans more than three decades. 
“When I was 8 years old, I was excited to win a competition through MS Queensland and receive a beautiful silver necklace with a key pendant - the ‘Key of Hope’. I wore this necklace everywhere for years but never understood the meaning behind it or the significance this charity would have in my life, 21 years later.  

“Today, this key (which I still have) really does symbolise hope for me. Hope that the medication will work to slow the progression, hope that my symptoms don’t worsen, and hope that one day the cause will be known so that it can be prevented and cured.” 

It was just three days after Karryn’s 29th birthday that she first became aware that something wasn’t right. 
“It was an ordinary Thursday at work when I noticed my vision suddenly went blurry. It started out being intermittent but by the weekend the blurriness had worsened and was consistent. After ruling out sight issues at an optometrist, I was advised to present to hospital late on a Saturday night. Within an hour of arriving at Holy Spirit at Chermside, I had undergone an MRI which identified a lesion on my optic nerve and was admitted to hospital,” Karryn said. 
 
“What followed was days of testing and ruling out possible life-threatening causes of the lesion.  It was a scary and confusing time. I was given IV steroids to assist with the inflammation of my optic nerve and sent home to ‘wait and see’ what might come of this. What came of it was, three years later, an official diagnosis of Relapsing-Remitting Multiple Sclerosis (RRMS).” This is the most common form of MS, characterised by periods of relapses (also known as attacks or exacerbations) where symptoms worsen, followed by periods of remission where symptoms improve or disappear.   
Stable for a few years, Karryn’s condition progressed significantly during 2019/2020, at which point she opted for a more aggressive form of treatment - Ocrevus infusions, which lower specific immune cells to reduce inflammation and slow progression. 
 
While the road to her initial diagnosis was slow, the changes to Karryn’s life were immediate. 

“I was told I could not put any stress on my body so was disappointed that I could no longer participate in a planned 60km walking fundraiser the following month. However, that same weekend happened to be the MS Moonlight Walk. Taking part in this first MS Moonlight Walk, I pledged to myself that night to participate in this event every year I was physically able.”  

Since 2015, Karryn has either walked in or volunteered at every MS Moonlight Walk. “During the early days of my diagnosis I knew about MS Queensland as I had participated in the walks each year but didn’t start to access their services until 2019. When challenged with the daunting task of deciding on medication, MS Queensland provided a one-on-one consultation with an MS nurse who had a wealth of knowledge about the options presented to me by my neurologist. I was able ask questions without being rushed or having any concerns about prescribing bias driven by incentives. I have also accessed the Neuro Assist line and had excellent support provided by Alfia and the team.  

“The walks I have fundraised for since this direct support from MS Queensland have had a significant emotional response as I know first-hand how valuable those funds raised are for myself and other people living with MS.” 
 
Even so, Karryn says, building awareness within the wider community remains a work in progress. 
 
“Often, when I catch up with someone I haven’t seen for a while and they ask how the MS is, they look at me and say, ‘but you look so well!’ I reply, ‘100% of the times you see me, I ‘look’ well. When I’m not well, I can’t leave the house – some days with the fatigue I can’t even make it out of bed’,” Karryn said.  
 

“That’s the hard part, that it is not visible or obvious to others to see what I am having difficulty with at the time. 

“Even my close friends sometimes are surprised to learn how the MS affects me because it’s really inconsistent. Things change from one day to the next and even from one hour to the next- I can go from feeling fine to having brain fog, speech issues, and problems walking within a matter of 10-15 minutes.  
 
“This can happen due to temperature change or sometimes there seems to be no obvious reason why I have a flare of symptoms. My balance is terrible, my walking can be very unsteady at times, heat intolerance due to issues with temperature regulation is hard to manage but the worst part for me is the debilitating fatigue. When my body has reached its limit, I fall asleep almost straight away, no matter where I am – this has even been on shopping centre floors.  
 
“Sometimes it’s only a short 5–10-minute nap or other times it takes my body over an hour to reset. After a heat or fatigue episode I usually then have fatigue for the next few days and can’t do anything.” 
 
Building that understanding by sharing her reality, Karryn says, is key to her fundraising success. 

“Over the years of fundraising for MS Queensland, people have been really generous and I’ve raised $1,395. Aside from friends and family there is often donations from people who know someone close to them with MS and feel personally connected, or people I used to know or work with who had no idea my condition has progressed. It is really heartwarming to receive that support. 

 “Often, it’s the support that pulls you through; the support from the people you love and of MS Queensland. Support and hope – hope for new, better treatments and for a cure.”

In the meantime, Karryn will keep walking, raising awareness and fundraising, this year her team Special K aims to raise $1000 – adding the 2025 MS Moonlight Walk to a 10-year streak of commitment to shining a light on neurological conditions.  

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