LIVING WITH MS FOR 12 YEARS
This year, we have been faced with unique and unpresented challenges, yet amongst this uncertainty, the 30 for 30 Challenge has created a special opportunity for one of our MS community members - Tim Leary.
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.
This year, with the introduction of the 30 for 30 Challenge, Tim will be getting involved in the participation side. He has set his own distance goal and will be using his recumbent bike at home to clock up his km’s.
LIVING WITH MS FOR 5 YEARS
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.
This year, with the virtual 30 for 30 Challenge, Penelope won’t be spectating – she’ll now suit up in her Team Jenny jersey alongside her husband Andrew (pictured), their daughter Jordan and a group of friends that have become family.
LIVING WITH MS FOR 27 YEARS
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 10 years. Going virtual has opened up a great opportunity to Mark as we will be using his wheelchair bike to ride for the first time. Together they hope to raise $2,500 to help provide services and support to people, like Mark, living with MS.
LIVING WITH MS FOR 47 YEARS
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 35 years ago and still their friendship and love is evident.
The year, with the introduction of the 30 for 30 Challenge, 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.
LIVING WITH MS FOR 8 YEARS
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.”
The 30 for 30 Challenge, is set to be the biggest year 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.”
This June, Geoff is aiming to head out for at least two rides each weekend and has set his individual fundraising goal for $7,500. Absolutely incredible!
LIVING WITH MS FOR 2 YEARS
Meg, now mother of two, was diagnosed with MS when she was 32 years old. Despite being diagnosed in late 2018, Meg says her symptoms started three years and included numbness to her shoulders, arms and feet.
“I had a tingling sensation to various parts of my body lasting for months at a time, as well as vertigo, fatigue, loss of memory and blurred vision.”
After Meg received her diagnosis of relapsing remitting MS, she says was relieved to be able to now give her symptoms a name and understand what was going on.
“After experiencing a myriad of symptoms and having no clue why, I was beginning to question my own sanity!”
After her diagnosis, Meg turned to MS Queensland as her first point of contact.
“When calling the NeuroAssist line, they 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 Physiotherapy.”
After Meg’s diagnosis, her husband Andy registered for the MS Brissie to the Bay bike ride in 2019 for the first time.
“Andy was very keen to participate in the ride and I was very impressed with the response we had from family and friends to get involved. I’m so proud of Andy’s fundraising efforts and I’m excited to see what we can do this year!”
Andy said when Meg was first diagnosed with MS, they didn’t know much about the disease, except that there was no cure.
“Meg has been fortunate in the fact that her symptoms are many, though are not significantly debilitating. Having said that, she has many lesions and there has been progression with each MRI she has had. We have the constant fear that the next lesion that manifests may introduce a symptom that will the heavily impact her quality of life.”
“Meg is brave and stoic and I am so proud of her. She is more concerned that she will become a burden on her family than for her own health which is ridiculous and breaks my heart.”
Since Meg’s diagnoses, Andy said he was eager to be involved in the MS Brissie to the Bay as a way to help raise funds and awareness to support other people going through this.
Last year Andy was the Team Captain of ‘Team Megatron’ with nine team members and he raised over $18,000 alone! This year Andy has plans to double the team size AND raise $30,000.
LIVING WITH MS FOR 13 YEARS
Hi, my name is Rachel and this is my personal story of living with multiple sclerosis.
I see myself as a loving mother to my bubbly son and a devoted wife….except, I have MS. I was in the middle of completing my high school exams, when I noticed that something wasn’t right. I started experiencing issues with my mobility and eyesight. At first I didn’t think too much of it, so I continued to carry on with my daily life. And then my eyesight started getting worse…I couldn’t even recognise people who were standing right in front of me. That was scary!
Living in Rockhampton didn’t help as there weren’t many resources here, and so I was flown to Brisbane for test after test. I was diagnosed with MS at just 17 years of age.
It was a frightening time for me.
MS is a constant struggle between what I would like to do and what I am able to do and it presents new challenges every day.
People kept telling me that there would be things I wouldn’t be able to do anymore. Through my most difficult stages, MS Queensland has helped me see the light at the end of the tunnel. They were a wealth of knowledge and have helped me overcome some of my hurdles.
I have my whole life ahead of me, and I am not going to let MS take control!
I didn’t choose to have MS, but I can choose how I live with it. I am excited that resources in Rockhampton have come along in leaps and bounds with 2014 seeing the opening of an MS Queensland office in Rockhampton as well as the appointment of a Regional Service Co-Ordinator dedicated to the Central Queensland area.
Since being diagnosed, I have become an MS ambassador and an active member of the Rockhampton community. To me, being an MS ambassador is very important as I feel our local area needs to be aware of what MS is and the effects of MS.
Thank you to all the fundraisers for the support you show by raising much needed funds for people living with MS like me.
LIVING WITH MS FOR 24 YEARS
Gail was 41, managing a business and raising her two young children, when she was diagnosed with secondary progressive MS in 1996.
“My life changed when I started getting pins and needles in parts of my body and losing my balance, my vision and the sensation in my feet.”
At the time of Gail’s diagnosis, she didn’t know anyone else living with this disease. Her MS progressed quickly, to the point where she required a wheelchair permanently by 2001.
“I had no idea what was happening. When my neurologist told me ‘you have multiple sclerosis’ I didn’t know what that meant. He explained that it is a nerve disease, but at that time I couldn’t absorb or understand what was happening to me.”
“Not one of us knows. We could go to bed one day and wake up the next and have lost our vision, lost our mobility, or have an incurable disease.”
Gail’s symptoms, such as fatigue, can be so debilitating some days that she simply can’t get out of bed. And on the mornings that she pushes past that intense feeling in her limbs, as well as the mental struggle, she’s usually exhausted by the afternoon.
“The hardest thing of all is losing your independence. After my diagnosis, my daughter at the age of 12 had to be a mother and sister to my son. My son at the age of 10 had to cook dinner because I couldn’t get out of bed.”
Two decades on from Gail’s diagnosis, she lives on the Gold Coast with her son’s family and her service dog, Coda.
“I would love to be independent, be able to maintain my home, work full time and dance again.”
Despite not being able to have full independence, Gail feels privileged to have Coda, who has enabled her to do the things she loves. Coda can help open doors, take her shoes off and put laundry in the washing machine (he even separates whites from colours!). Gail has had to rely on MS Queensland in times of need, and says she shudders to think where she
would be without MS Queensland.
“MS Queensland have been amazing help and support for me both mentally and physically. They’ve provided me with amazing physiotherapy support, and having access to a Service Coordinator has been a lifeline! I’ve met some lovely people and made lifelong friends.”