Reaching new heights
“I think I did more as a result of getting MS, than I would have if I hadn’t.”
Reaching new heights
For Horst Bemmerl, there is always another mountain to climb.
Standing at the summit of Mount Kinabalu, an overwhelming 4095 metres above sea level, Horst reflected on the grueling two-day trek that led him to this new peak, conceding the climb was so much harder than he imagined.
With his wife Helen by his side, the pair were amongst the oldest in the group to tackle the gargantuan challenge of which a third failed to achieve due to exhaustion and altitude sickness.
“I don’t easily give up but I told our guide I didn’t think we could make it,” Horst said, “he helped us break through the exhaustion and pain.”
Despite having feet full of blisters following the enormous challenge, Horst was already thinking ahead to his next adventure; a 150km pilgrimage of the Camino de Santiago.
But there was a time when attempting these extreme challenges of physical and mental toughness seemed like an impossible dream.
In August 2007, a fit and active Horst was training for the City to Surf running event when something didn’t feel right.
“I was jogging, and I was getting numbness in my neck and left hand, and I thought maybe I had pinched a nerve,” Horst said.
After a third visit to a physiotherapist without any improvement, Horst was referred to a GP and soon found himself at Royal Perth Hospital.
“I went in and out for the next two or three days, not knowing what was going on,” he said.
After arranging an MRI privately, Horst picked up his own results while on his lunch break from work.
“At the end of the report it said ‘MS’,” he said. “At first you are a little bit numb, wondering ‘what does that mean?’.”
“Being diagnosed with MS leaves you with the uncertainty of how it will progress.”
“All the questions you ask are ‘will this happen, will that happen?’ and the answers are ‘I don’t know’.”
Horst didn’t take much time off work to process the diagnosis and kept it a well-guarded secret outside his family circle.
“I think my wife would say that I was in denial. But I just thought, well life goes on,” Horst said.
“But as the years went on, I became more comfortable with the fact that I am living with MS and I am not afraid to share that information.”
Horst’s journey with MSWA started soon after his diagnosis, seeing a counsellor, Bev, who he credits for his tenure as one of the longest serving board members with MSWA.
“Our discussions gave me the motivation to apply to join the board when a position became vacant,” he said.
“I was very fortunate in how I was progressing with the illness, and I thought I might be able to add value to the organisation that helps others with MS.”
“For me, it is about contributing by creating a system that supports others who haven’t been as fortunate as me.”
After serving 12 years on the MSWA board, Horst was sworn in as the MSWA Board President in late 2022.
With Horst also holding a director position with Multiple Sclerosis Australia, a key focus is to work more closely with our state and national peers to achieve better outcomes for the people we support.
“It’s the final piece of the puzzle,” Horst said.
“Having been in executive positions most of my life, the one thing that was still lacking was coordination around the national body and the state bodies.”
“The work we do is about helping people living with neurological conditions, but it is also about the research.”
“A big part of what the national body does is research and advocacy, so it is making sure this gets done in a manner that is efficient and produces the best outcomes for people with MS.”
For Horst, his MS diagnosis gave him the gift of perspective.
“I just wanted to get on with life and didn’t want to let it stop me from doing things,” he said.
“I think I did more as a result of getting MS, than I would have if I hadn’t.”
“There are many overseas trips I took that I said yes to because I didn’t know how long I would be able too.”
Exercise has continued to be a big part of Horst’s life and has helped him along his MS journey.
“I always think keeping active – and I am very diligent about it – would help me,” he said.
“So, I have done quite a lot of things in my time, like climbing Bluff Knoll, Cradle Mountain in Tasmania last year, and now Mt Kinabaloo.”
“We even climbed Mount Wellington in the snow – we just had sneakers on too. We weren’t expecting to walk it, but the roads were closed because of all the snow, so we thought ‘why not?’.”
“I caught up with the chair of the MS Australia board, who lives in Tasmania, and I mentioned we had climbed it on the zig zag trial. He said that trial is considered very difficult and mainly used by professionals and he was amazed we had managed to do it in one day!”
“I think each climb is an opportunity to squeeze the most out of life.”
Looking ahead to the future, Horst said his ultimate hope was for people with MS and other neurological conditions to no longer need support due to a cure or even better treatments.
Until that time, his focus for MSWA is that the organisation provides the best support for people with neurological conditions, to live their lives the way they choose, in the best way possible.
“My perspective has always been about providing tools, resources and treatments so you can live as much a normal life as possible,” he said.
“For me as a person, being able to be independent and living life to its fullest is so important.”
When it comes to advice, Horst’s is quite simple: focus on the positives.
“Of course there are negatives, but what is the point of dwelling on them – you can’t do anything about it, so focus on the positives,” he said.
“That’s what everybody needs: hope. Without hope you don’t have anything.”
