At the young age of 26 years old, I was diagnosed in MS.
In hindsight, there were signs of MS long before my diagnosis was confirmed. For 8 years I had severe fatigue, that was at times debilitating.
In 2014, I suddenly started experiencing cognitive issues and struggled with my balance, which progressed to complete numbness across the entire left side of my body over a period of for three weeks.
When it was confirmed that I had MS, I was fairly positive about it and felt a sense of relief that I knew why these symptoms were occurring.
The hardest part was having to stay in hospital for a few more days to receive treatment, when I was desperate to go home, and be with my family.
Fortunately, my neurologist was wonderful throughout my time in hospital – very caring, and willing to answer all my questions, in what was quite a scary time.
I was put in touch with MS Queensland, who have been an incredible help, right from the beginning.
Without MS Queensland, I honestly would be lost and confused. The information I have received has been invaluable.
After my initial diagnosis, I met with the MS Nurse, who assisted me in choosing the best treatment for me, which can be a difficult decision.
I have also used the webinars and other information sessions, to help me and my family better understand MS, and how MS Queensland can best support me.
It's so comforting to know the team at MS Queensland are right there, when we need you.
Years on from my diagnosis, and I am very fortunate that my MS has not changed my life too much. With the incredible treatments and support available now, I can live a great life. I am even starting my PhD this year, which is something I would have never imagined I would or could do.
While my MS can flair up, I take each day as it comes and don’t punish myself if I don’t achieve everything that I wanted to – there is always tomorrow.
My journey with MS Queensland and the MS Brissie to the Bay bike ride started after my daughter, Laura, was diagnosed with MS at the young age of 26 years old, just short of her 27th birthday.
Laura met with a Neurologist after she had been experiencing tingling down one of her arms. A few days and a number of scans later we were given the diagnosis. In that initial meeting, I had no idea what they were talking about. It was surreal. In that moment, Laura was stoic. I was a mess, and her mother was somewhere between.
When hearing the news of her diagnosis, I was devastated. I couldn’t actually talk with anyone about the diagnosis for a long time, I got too upset whenever anyone asked me how Laura was.
In the early days of trialing various medications, the support from the MS nurses was really helpful and important for us. They helped greatly in getting scans and appointments with the neurologists organised and this took away a lot of the stress and uncertainty.
After Laura’s MS diagnosis, I started riding in the MS Brissie to the Bay the following year, for the 25th year. I have since participated in seven rides and have been an MS Legend each year. I am quite proud of this, and they are the only jerseys I use when riding.
Taking part in the ride felt like it was a really good way of showing my support for Laura. As a parent you always feel responsible for your children and they are always your children no matter what age they are.
As a parent, you are used to being able to fix things for your children, but when something like MS, you actually feel quite useless.
The ride gave me a tangible and worthwhile way of showing my support and love – although I know that Laura has never really doubted those things.
At just 27 years old, Brooklyn was happily planning what she calls her “really grandiose, big, over-the-top” wedding. Brooklyn is a young, energetic go-getter, who was ecstatic about her next big step and embarking on the next chapter in her life.
You can understand how terrifying it must have been for Brooklyn, to all of a sudden be stopped in her tracks.
It was in May 2021, that Brooklyn’s vision suddenly doubled. She went to her optometrist, who confirmed her eyes were perfectly healthy. After spending a nervous weekend worrying about what was wrong, Brooklyn took herself to the hospital. Next thing she knew, Brooklyn was in the neurology ward facing test after urgent test. She was there for five more days, terrified and confused.
“I was in a ward with people who had all sorts of neurological problems. People who’d had strokes. Most of the people in there weren’t verbal. I had no idea why I was in the same ward as them.”
After days of testing, the doctors were sure. Brooklyn had MS. Sadly, MS is a condition that so often overwhelmingly affects young women around Brooklyn’s age.
“I didn’t know anything about MS. I was just really overwhelmed. I really didn't know what to think.”
By the time Brooklyn was ready to be discharged from hospital, she’d had the worst week of her life. She was overwhelmed, and still had no idea what MS meant for her and her future.
It was when MS Queensland's specialist nurse visited Brooklyn before she was discharged, that she received the comfort and care she needed.
At just 24 years old, Lana was studying a Master of Teaching and Learning, with her dream of becoming a Japanese teacher.
In July 2020, Lana started to experience nerve pain in her lower back and numbness that spread down her right leg, up her torso and half her face. Just weeks later, she started to have brain fog, memory problems and trouble concentrating.
“I was supposed to become a teacher, but at that point I could hardly concentrate enough to write an email to my university lecturers to withdraw from my course.
My body felt so weak. I was terrified of waking up the next day and not being able to walk anymore.”
Lana was admitted to hospital and was given treatment for her brain and spinal lesions. It was only after the hospital treatment, her attack peaked. Both her legs started going numb and Lana had a lot of trouble walking.
Lana started a month-long rehab program, but as it came to an end and she was starting to feel better. She suddenly got worse again, she experienced another attack. After undergoing more MRI’s, Lana was diagnosed with Relapsing Remitting Multiple Sclerosis.
She was devastated. For months after her diagnosis, Lana kept it a secret from as many people as she could. She was scared it would cause people to look at her differently.
“I was so scared about my future. I had lots of nightmares. I felt like I had no control of my body or my life anymore.”
Since receiving her diagnosis, Lana has learned to stop, rest and make time for self-care. She has has to learn to accept help from others without feeling guilty.
While navigating her new diagnosis, Lana connected with her local MS Support group and received support from the MS Queensland service coordinator, Angie.
“I have so much help managing my new condition and also within the home. It has really helped take the strain off my partner who had to step up so much early on - before all the support.”
It was actually through her MS support group, that Lana first became involved with the MS Queensland’s events.
“I felt so much love and support and so accepted by everyone there. It meant the world to me.”
After experiencing symptoms for over a year, Nicole was diagnosed with relapsing remitting MS in September of 2011, at just 28 years old.
“The first episode caused the entire right side of my body to go numb, and I was put in hospital for tests. My neurologists only did a scan of my spine, and not of my brain. It wasn’t until a year later that I went back, after the numbness-like pattern had returned once again. That’s when they did a scan of my brain, confirming I had MS.”
Now 10 years on from Nicole’s MS diagnosis, she reflects on what it has been like living with the disease.
“I believe MS has made me a stronger person, to fight for what I believe in and appreciate my family, friends, life and health much more than what I did prior. My family and friends have been such an amazing support system and I will be forever in their debt.”
It was Nicole’s boss, Peter, who had been involved with MS Queensland’s Brissie to the Bay bike ride for the past few years, participating and fundraising as part of the 100km ride.
When he learnt of Nicole’s MS diagnosis, he approached her to create a Shaw & Partners Corporate Team. Nicole says she jumped at the chance!
“It fills all of us in the Shaw & Partners team with immense pride to see our brand and advisers amongst the wonderful volunteers, supporters and participants in this great event. It is a phenomenal opportunity to raise awareness of MS, and to raise funds for support services and research, along with just being an overall fun day! We look forward to many more years being able to participate in the Brissie to the Bay ride.”
Shaw & Partners have cracked the $100,000 fundraising milestone, an outstanding feat. But they aren’t stopping there, as they continue to climb, with a new team goal in sight. The impacts and difference made possible for Nicole, and many other people living with MS, from the success of Shaw & Partners fundraising success is of incredible magnitude.
Nicole says: “I really want to find a cure because I don’t want to wake up one day and find myself permanently in a wheelchair.”
My name is Alyssa, and I have been part of the MS Queensland events community for a number of years.
I am proud to have jumped on my bike and cycled in the MS Brissie to the Bay and in the last couple of years, I traded my bike helmet for a swimming cap to take part in the MS Swimathon.
I was diagnosed with relapsing-remitting MS in 2009, when I was just 23 years old.
I look back now and think I had symptoms since I was about eighteen. I used to experience ongoing fatigue and muscle weakness. I had optic neuritis for a month before I was diagnosed with MS.
I have experienced symptoms including loss of balance, muscle weakness, vertigo, and even, loss of sensation in one of my legs.
I remember when I was first told I had MS, I just cried and felt so overwhelmed. MS Queensland has been there to help since 2009. When I was first diagnosed, I had an initial visit and was provided with information packs.
Since then, I have been able to access physiotherapy, consultations with the MS nurse and service referrals.
I’d feel pretty lost without MS Queensland. Dr Google can’t give you anything compared to the wealth of knowledge, professionalism and support that MSQ have given me.
13 years on from my diagnosis, I am a mother of two, and my MS hasn’t stopped me from doing anything, but it has forced me to adjust. My MS has taught me about strength, resilience and being your own best advocate as no one else knows what you are going through but you. Everyone’s journey is so different.
I was diagnosed with MS in 2018 when I was 32 years old, however my symptoms started years earlier. Among many other varying symptoms, I had experienced a tingling sensation to various parts of my body lasting for months at a time, as well as vertigo, extreme fatigue, loss of memory and blurred vision.
Once my diagnosis was confirmed as relapsing remitting MS, I was somewhat relieved to be able to give the symptoms I had been experiencing for years a name and understand what was going on - for a while there I was starting to question my own sanity!
After my neurologist told me I had MS, I gave MS Queensland a call as my first point of contact.
The NeuroAssist team were able to outline my options and the many support networks provided by MS Queensland. My husband and I have found the webinars to be very informative and helpful. I’ve also utilised the MS Nurse and psychologist. This year I’m hoping to utilise an MS Physiotherapist.
Since my diagnosis, MS has taught me to better understand my limits - as difficult as it is to admit - but to also take each day as it comes. We are also very fortunate to have a strong support network of family and friends.
Raising money and awareness for MS is important to me, having joined this Community I felt it important to support a community that has supported me.
So, after my diagnosis, my husband Andy was very keen to participate in the MS Brissie to the Bay bike ride and I was very impressed with the response we had from our family and friends to get involved. He will be riding again this year in the 100km ride.
Vanessa, age 35, was diagnosed with MS in 2018, two years after she first started experiencing symptoms.
"After relapsing within 9 months of diagnosis, I was told to switch therapy and proceeded with a treatment that aims to rebuild the immune system. It’s supposed to be highly effective but is also considered high risk. I was due to have my second infusion and then had two bad MS attacks just as COVID pandemic was hitting.
I had blurred vision, my hand went numb and there was a lot of damage seen in an MRI scan. When many people were getting their treatments delayed my neurologist moved my infusion forward. So, I was killing off all my Lymphocytes (white blood cells) in the middle of a pandemic. It was really scary.”
I love giving back and raising awareness for MS. We took part in MS Queensland’s Moonlight Walk in 2018 & Brissie to Bay 2019 with great fundraising success. Morgans have been so supportive of me and have also donated funds via our Foundation several times over the years. Many of my family, friends, colleagues and clients have got involved and it’s really heart-warming. So far our team have raised $…… and hopefully we can keep increasing our target!
Last year my sister and I took part in MS Queensland’s virtual ride in June and we got really involved in mountain bike riding! We’d plan days with our friends and do different trails across Brisbane and on the Coast to get out in nature.
I like the 30 day challenge as road biking isn’t for everyone. You can participate on the mountain bike or a stationary bike in the gym and it still counts. The more people who are involved the more awareness is raised about MS.”
Ashley is a young, energetic go-getter, who loves to travel, socialise with friends and was a regular at her Pilates classes. Her life was extremely busy juggling university, an internship and full-time work.
After a Pilates class one day, Ashley started to get soreness in her legs, that transitioned to numbness from her feet to her waist. Being so young and busy, Ashley didn’t think much of it and put off going to the doctor for months.
Almost a year later, Ashley was seeing her physiotherapist about the numbness and was referred for an MRI. The MRI showed lesions on her brain and after undergoing further testing, she found herself in her Neurologists office. She was told she had MS.
“I remember looking out the window, and it was a hot sunny day. I was looking at my doctor, listening to her and I couldn’t remember anything she said.”
You can understand how terrifying it must have been for Ashley, to all of a sudden be stopped in her tracks. MS is a condition that so often overwhelmingly affects young women. 3 in 4 people diagnosed are women and the average age of diagnosis is just 30 years of age.
“When you’re young, you don’t think it’s going to be something as detrimental as MS.”
Since her diagnosis in 2021, Ashley’s symptoms have been mild and she is able to continue with her life, with just some adjustments.
She experiences constant tingling in her legs and can often get aches in her joints. One of the biggest struggles she has is fatigue and the uncertainty of how long it can last.Even though Ashley feels very lucky to be able to live her life, her MS has taught her the importance of taking care of herself.
She has an incredible support system through her friends, family, partner and more recently, a great support group, who helped her navigate through her new diagnosis.
Holly was diagnosed with MS in October 2019, when she was just 21 years old.
However, she had started experiencing symptoms as early as two years prior, in 2017 just a week before her 20th birthday. She started experiencing mild eye pain the night before, but figured it was just a headache and didn’t think much of it.
When she woke the following morning, 90% of her vision was complete gone in her right eye.
In the first conversations about the possibility of an MS diagnosis, Holly described the feelings of complete fear.
“I was frightened, extremely scared and overall confused as to why this was happening to me all before my 20th birthday.”
However, Holly says that when her neurologist said: ‘you tick the boxes for a MS diagnosis’ years later – it was actually a relief.
“It was a relief because there was finally a conclusive reason and answer to why I was feeling the way I was, and why my body was behaving the way it was.
I would be lying if I didn’t say I wasn’t still upset and frightened about the unknown with my diagnosis. It was the first thing I thought about when I opened my eyes and the last thing I thought about when I closed my eyes.”
However, Holly explains that once she describes herself having hit rock bottom, she knew the only way was up, and that now with her diagnosis confirmed, she would have the opportunity to get the treatment needed to continue enjoying her life.
“My biggest fear is the unknown - the unknown of what I will be like in 10, 20 30+ years’ time, what will my symptoms be like then – will I have new ones – how fast with the disease progress?
I try not to let these thoughts cloud my head as it’s something I cannot control. What I can control is how I choose to spend the years ahead.”
In addition to the vision-based issues and occasional muscle weakness Holly experiences, she also deals with pins and needles in her left leg, that has become a part of her daily life, and something she’s learnt to live with.
“MS Queensland really helped me in the beginning of my MS journey when I was seeking out information and resources that I knew were reliable. I found the resources online amazing and really helped me understand the disease in terms that I could easily digest, rather than scientific and hard to read reports and studies online.
MS Queensland also helped me realise that there are so many other people out there affected by this disease and that there are many communities and groups that specifically created for people with MS. It made me feel less alone knowing that MS Queensland was a central hub where I could connect with others as well as access a variety of resources.”
Mark was diagnosed with MS in 1993, at just 20 years old. Mark’s symptoms began a few years prior. He felt scared and frustrated when he came home from soccer practice with numbness in his feet. Each time, the numbness would only get worse for days after, rising to his knees.
When he received his diagnosis, Mark felt some relief; finally hearing what was causing the symptoms.
Mark’s diagnosis was secondary progressive MS. This meant that over the years, the symptoms got worse, having a major impact on his life. He lost the ability to use his arm and legs.
Imagine not being able to walk anymore.
Despite his daily struggles and the challenges of not being able to do what he used to, or help where he wants to, Mark believes his MS has taught him patience.
“You need good support and available resources to help cope with the challenges involved.”
Whilst his life is still impacted by MS, Mark is thriving in life – with his beautiful wife and two wonderful sons. He also recently published his own autobiography to share his incredible life achievements.
Mark and his family have been involved in the MS Brissie to the Bay ride for over 10 years. When the MS Brissie to the Bay went virtual in 2020, this opened up a great opportunity to Mark as we will be using his wheelchair bike to ride for the first time.
Penelope was diagnosed with relapsing remitting MS in 2015. She was 41 years old and in the middle of her teaching degree. During this time, Penelope struggled with many symptoms including headaches, loss of balance and issues processing information. At the time she compared her symptoms to having ‘someone unplug her brain.’
After receiving her diagnosis, Penelope felt an immediate sense of relief - she had a cause to explain her symptoms. Yet, she was quickly overwhelmed by how this diagnosis would impact her life.
“I remember thinking what is MS and how was I going to cope with this as my new normal.”
Throughout her journey with MS, Penelope has engaged with MS Queensland services, including support coordination and physiotherapy. Penelope believes that without the support of MS Queensland, she would not be living as well as she is today.
“MS awareness and fundraising is important because whilst we’ve come a long way with treatments, people are still hearing those words “I’m sorry, but you have MS.” We need to put that sentence into the history books, so nobody hears those words again.”
Penelope is a wife, mother to two amazing teenagers, a recent new business owner and for several years has been a spectator at the MS Brissie to the Bay ride.
In 2020 when the MS Brissie to the Bay pivoted to a virtual ride, rather then spectating with the Cheer Club, Penelope suited up in her Team Jenny jersey alongside her husband Andrew (pictured), their daughter Jordan and a group of friends that have become family.
Tim is a software engineer, a member of our Cheer Club and this year, he will have the opportunity to participate in our ride to fight MS.
In April of 2008, Tim was a young, active 24-year-old, who had just received his MS diagnosis. After experiencing symptoms of balance and strength issues, slurred speech and extreme fatigue, Tim underwent extensive testing before being diagnosed with MS.
This diagnosis was very hard for Tim, his twin brother Dan and their entire family - who at the time, knew little about MS and what this meant for Tim.
A few years after his diagnosis, Tim engaged the services with MS Queensland, that he found to have a fantastic impact on his life.
Together, Tim and Dan have been involved in many MS Queensland events over the years. In 2013, Dan (pictured) signed up to ride in the MS Brissie to the Bay, to show his support for Tim and others living with MS, and raise much needed money for support services. Tim joined the MS Cheer Club a few years later.
"We are a team."
Each year, together Tim and Dan make an incredible impact through not only their involvement and participation, but through their fundraising. Tim is always surprised by the kindness and generosity of people showing their support.
In 2020, we have were faced with unique and unpresented challenges, yet amongst this uncertainty, the MS Brissie to the Bay bike ride pivoted to a virtual ride. This new format of the ride created a special opportunity for one of our MS community members - one being Tim Leary.
Tim will be getting involved once again tis year, to participant using his recumbent bike at home to clock up his km’s.
You may recognise Jenny’s face from past years as you’ve cycled over the finish line and are greeted by the crowd of clapping Cheer Club supporters in their red and white shirts, welcoming you back from your ride and thanking you for showing your commitment to fight MS.
Jenny was diagnosed with MS in 1973, when she was in Year 10 and just 15 years old. The muscle spasms, lack of balance and numbness made it hard to live the active life of a regular teenager. Jenny’s mum, who was a nurse herself, insisted that Jenny see her GP, where she was immediately referred to a Neurologist.
Yet, before she could see the specialist, Jenny had a severe episode- experiencing complete paralysis and blindness in both eyes. For Jenny, the next three months were spent in hospital enduring countless tests to determine the cause of her symptoms. At this time, MRI’s were not available, and Jenny had to endure three lumbar punctures before receiving her MS diagnosis. She was confused, scared and could not fathom what effect that would have on the rest of her life.
Soon after her diagnosis, Jenny began working and was employed with the same company for eleven years. She fondly refers to the business as family, rather than an employer. In 2013, Jenny’s ongoing symptoms forced her to stop working.
Today, Jenny spends most days with her wonderful husband and full-time carer; Charlie. When asked what her motivation is to keep fighting, she states:
“My husband….my husband is my motivation.”
The two were married over 35 years ago and still their friendship and love is evident.
In 2020 with the introduction of the virtual ride, Jenny has the opportunity to join Team Jenny and take part in the ride to fight MS. Charlie and Jenny can support each other throughout June and together, make the biggest impact they can for people living with MS.
The MS Brissie to the Bay began in 1990, with just 80 riders and a desire to make an impact for people facing the daily battle of living with MS. Today, the MS Brissie to the Bay is so much more than the ride, it is an incredible community of inspiring individuals, showing their support in the fight against MS.
We wanted to introduce you to Geoff: a fellow rider, the team captain of the wonderful Greensteam and one of the many individuals living with MS who needs your support, now more than ever.
Geoff was diagnosed with MS in 2012 and shortly after his diagnosis, his brother encouraged him to get involved in a MS charity cycle. This was the very beginning of the Greensteam, with just three members and a goal to make an impact. As he struggled through his first ride, each turn of the pedal was a fight for Geoff.
Geoff first joined the MS Brissie to the Bay in 2014 and has been a participant in the 100km ride every year since. For Geoff, the ride is an escape, an opportunity to focus on something positive and keeps his mind off other things going on.
“The reason I do this ride and have raised money for this ride over the years is to help others as much as I can, as one day I may also need this help.”
2020 marked the biggest year yet for the Greensteam, with 35 people joining the team!
“It means a lot to me to have this support and friendship of people who are taking time out of their lives to ride alongside and help support Greensteam and people living with MS.”