‘It is what it is’ – Maxine Johnston’s MS journey
Maxine Johnston joined UNW in 2012, initially working as a consultant for the corporate finance team before joining the firm permanently in 2014. Two years later, she was diagnosed with Multiple Sclerosis (MS). We chat to her about her journey since the diagnosis, her career at UNW and her optimism for the future.
“To be honest, I knew it was coming. In a weird way, to have it confirmed came as a bit of a relief.” It was on Christmas Eve 2015, with families excitedly preparing for their festive celebrations, that Maxine Johnston first learnt that it was likely she had Multiple Sclerosis (MS) at the age of just 37.
“I can’t get too down about it, it is what it is” says Maxine. Despite all she has been through over the past two years, what really shines through and resonates is the determination to not let her diagnosis affect or dictate her life in any way.
“When the doctor rang to say it looked like I had MS, it was the Christmas break from work, so I really didn’t think about it all that much.”
“I’d bought the entire James Bond box set for my partner as a gift, and that’s all we did over the Christmas holidays, sat and watched James Bond. It may seem strange, but that’s always how I’ll remember processing the situation in my mind. Being diagnosed with MS will forever be associated with James Bond for me!” smiles Maxine. On the subject of Bond, Pierce Brosnan gets a big thumbs up, Roger Moore less so.
Multiple sclerosis is a long-term demyelinating condition that damages nerve cells in the brain and spinal cord. Symptoms differ from person to person, but MS commonly causes life-changing issues with vision, balance, muscle control and other basic body functions. It affects around 100,000 people in the UK, with around 5,000 diagnosed every year.
The fact that the early symptoms of multiple sclerosis are often so similar to many other diseases means that it is not unusual for a person to have a prolonged period between the onset and a definitive diagnosis.
This was the case for Maxine, who experienced prolonged double vision in the early part of 2004, the year before the birth of her daughter, Ella. “It was then around the September time (2015) that I lost the feeling in my arms and hands, which I’ve been told will never come back, and had really tight pain right across my chest, which is known as the MS hug. But it still wasn’t until the following April that I got it officially confirmed.”
“Knowing what I know now, I’ve probably had MS since my teens. At University, it was a running joke that I constantly needed afternoon naps. In hindsight, this was probably a major warning sign of what was to come.”
She was prescribed a course of Tecfidera, a course of disease modifying drugs (DMD) to reduce the number and severity of relapses. “The diagnosis meant that whatever was going on with my body had a label and I could start living my life again.”
Then on December 16th, 2017, nearly two years after first being told that it looked like she had MS, Maxine found a letter at the door telling her that her medication was not working.
“That completely and utterly knocked me for six.” she says. “I’d just been to watch Ella play trumpet in the Christmas concert, and had hit my target weight at Slimming World. To go from such a high to that low was devastating. But it is what it is, we went out for a meal and carried on as normal.”
The MS nurse told Maxine that the alternative was Lemtrada, a course of infusions used for relapsing MS. “Reality really hit home when my nurse was laying this all out to me. I was in hospital for a week in January receiving it and then go back in for another 3 days next January. I’ll probably learn then if it has worked, it’s 50/50”
“I went back to work a little too early after the treatment, but UNW was so understanding and there was no shirking around the issue. That’s exactly how I want it to be.”
Maxine initially joined UNW in 2012 on a consultancy basis before becoming a permanent member of the corporate finance team in November 2014, just over a year before her diagnosis. “I truly believe that UNW is an extremely forward-looking firm in terms of disability. The support I’ve received has been phenomenal.”
But that’s not all, Maxine’s role has developed in the time since, and she recently joined UNW’s marketing team to lead the firm’s annual events programme. “This includes internal events we hold either independently or jointly with partners, plus any external events we attend. I’ll be working with colleagues across departments and key partner organisations to ensure they reflect our brand and generate firm-wide opportunities. I’m really excited, and grateful to UNW for trusting me with the responsibility to share my time between two roles.”
There’s a great deal for Maxine to be upbeat about. As ever, she isn’t dwelling on it too much. “I don’t know what the future holds for me, and quite frankly, I don’t care. My life is still amazing. I have an amazing daughter who continues to be such a source of pride to me, a partner I adore and a job I love. Not everyone can say that.”
As part of the UNW’s work within the local community, colleagues are asked to nominate a local, independent organisation as their ‘charity of the year’, with MS Research and Relief Fund (MSRRF) being chosen for 2018/19.
MS Research and Relief Fund (MSRRF) is based in Morpeth and supports those affected by MS and their families through free classes and therapies, as well as grants providing access to specific equipment to limit the impact the condition has on their lives.
Throughout the year, UNW will raise funds for the charity through a wide range of activities, challenges and events, including a 27-mile castle walk from Warkworth to Bamburgh on Saturday, 13th October. To learn more about the challenge, or to kindly sponsor the team, please visit: https://www.justgiving.com/fundraising/unw-llp3
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