When Reg first experienced a sudden loss of feeling from his waist down in 1997, he had no idea it would mark the beginning of a decades-long journey with multiple sclerosis (MS).
At the time, doctors diagnosed Reg with myelitis, around the 11th vertebra of his spine. Doctors had reassured him it would likely resolve and while most of the sensation did return, he never fully restored full sensation throughout this body.
“After two or three months, most of the feeling returned to my legs, but I never regained full sensation,”
Reg recalls, “Even now, I only have about 80% feeling.”
Nearly 20 years later, in 2016, Reg noticed a significant loss of sensation on the left-hand side of his face and body, particularly in his arm and leg. A scan revealed lesions on his brain and spine, precisely where the original myelitis had been detected.
It was during this scan that he was diagnosed with MS.
“At the time of my diagnosis, I was uncertain about my symptoms and what the future was going to be,” Reg says.
“The symptoms were inconsistent, sometimes getting worse, sometimes improving.”
Looking for answers, Reg reached out to the MS Society while living in Goolwa. “They provided me with information and ongoing support,” he says. “Eventually, I moved to Adelaide to be closer to medical facilities and continued my relationship with the MS Society.”
Now 77, Reg has learned to live with fluctuating symptoms, including numbness, weakness, and ongoing spinal issues. With support, he has found ways to manage his health and maintain his independence.
“I attended one of their physical fitness groups, which was a wonderful experience,” he explains.
“It was run by a woman named Leoni, and through that group I met Evan, a physiotherapist at the MS Society in Adelaide.”
“Several months later, Evan offered me advice regarding my persistent headaches, suggesting physiotherapy focused on my neck.
“I followed through, went on a care plan through my GP, and started treatment. Since then, I’ve experienced significantly fewer headaches thanks to that advice.”
Just as important as professional guidance has been, the support of peers has helped Reg to feel empowered even during the darkest days. “I’ve developed strong friendships through a monthly support group,” Reg says.
“Many of them are now close friends, and I highly recommend this kind of support network.”
“Connecting with others and receiving good, informed advice has been invaluable.”
About 15 months ago, Reg made the difficult decision to stop driving after a frightening episode at home.
“I was in the kitchen holding two cups of coffee when I suddenly lost focus.”
“Although I didn’t black out, I completely lost concentration. That incident really worried me.”
“I realised how dangerous it could have been if I’d been behind the wheel. From that moment on, I decided not to drive again.”
Sharing this decision with his MS group helped him process the change and highlighted the importance of open conversations.
Reg says being honest about his condition has made a big difference. “The more open I am, the more support I receive.
“Opening up allows others into your life, not only to give advice and friendship, but also to receive the same from you.”
When asked about what advice he would offer to others newly diagnosed, he highlighted that everyone’s journey is different, but to constantly reflect on that journey and what has taken place.
“But I do believe the first step is to reflect on what has happened and take time to understand your situation.”
“Yes, it may change your life, but it may also open doors you never expected.
“If I can share my experiences and learn from others, then I believe my life will be richer for it.”
Reg’s story is a strong reminder of the diverse journeys people living with MS undertake. From decades of misdiagnosis to embracing the challenges of this condition, Reg has found a community that he knows and trusts and will continue to look forward and not let MS define him.