Celebration of Life - January 2024 Nigels Story

A LIVING CELEBRATION

Nigel Caswell

“Engineering a way to help others with MS”

Nigel Caswell wasn’t keen on attending his first multiple sclerosis (MS) conference. Diagnosed with progressive MS in 1993, he admitted he was afraid. “I didn’t know what I’d see or what my future held,” recalled Nigel. But going turned out to be a good decision.

While at the conference, he noticed an ambassador’s stall and spoke to the people running it.

“They were recruiting people willing to talk to community groups about MS. I enjoy public speaking, and I’m a blue sky sort of person, so I thought: why not help?”

It changed his life for the better.

Nigel has been a volunteer and advocate in the MS community for over 20 years. For MS Plus, he speaks to groups and schools about living with MS. For MS Australia, Nigel

lobbies politicians about the MS community’s concerns.

In 2022, the 78–year–old Bentleigh resident received MS Australia’s John Studdy Award. The award recognised his service to others living with the condition.

“Volunteering has helped me to live with MS. It’s turned something that might seem like bad luck into an advantage.

I’m sure I get more attention because people don’t expect someone in a wheelchair to make intelligent remarks.”

Nigel doesn’t consider himself an invalid.

“I’m a healthy person who happens to have MS,” he said.

MS likely started in his teens

After emigrating to Australia from England for work in 1972, Nigel fell in love with the country’s outdoor lifestyle. He enjoyed camping, bushwalking and skiing with his wife Stevie and their two sons.

But by the late 1980s, he started to have problems with his legs and had to curb his activities.

Like many with MS, it took years for Nigel to get the correct diagnosis. He underwent unpleasant tests and a complex operation that didn’t help.

It took five more years and an MRI scan before Nigel learned he had MS.

Doctors told Nigel he likely had the disease since the mid–1970s. Nigel thought it might have been earlier.

“MS may have been why I failed my air force physical when I was 19. The doctor said I had trouble coordinating my hands and feet,” he recalled.

He thinks there might be a genetic component: a second cousin also has MS.

Getting his diagnosis was a relief because at least he knew what he was dealing with. He could also access proper treatment and support.

Nigel was lucky in his workplace. Thanks to understanding supervisors and colleagues, he continued working as an engineer.

He later worked as general manager at Parks Victoria for several years. He even had a second career as a marriage and funeral celebrant.

“Unfortunately, many others with MS don’t have support in the workplace,” he said.

He wishes the wider community was more understanding of those living with MS.

“While awareness of the capabilities of people with disabilities has increased a lot, some employers still have a way to go.

Many people with MS become unemployed. It’s an enormous waste of their talent and contributions.”

Now retired, Nigel likes caravan touring with Stevie. He enjoys spending time with his four granddaughters. He’s also taken up watercolour painting as a hobby.

Nowadays, he uses a walker at home and a wheelchair when he goes out. But he said he feels lucky.

And he continues volunteering.

In addition to his work with MS Plus and MS Australia, Nigel is president of People with MS (PwMS) Victoria. He’s also the former chair of MS Plus’s community engagement committee.

He’s chaired the Victorian branch of the Institution of Civil Engineers and the Civil Celebrants Graduate Association. He’s sat on several hospital advisory bodies and Victorian government committees.

Nigel’s also given time as secretary of his local Scout group and organised ANZAC Day and Remembrance Day ceremonies.

“I’m not the sort to let the grass grow under my feet,” he said.

For his many endeavours, Nigel received an OAM (Medal of the Order of Australia) in 2013.

Letting his volunteer work live on

Being an ambassador and donor are two ways Nigel has thanked MS Plus for its support and professionalism.

Now, he’s picked a third way: Nigel’s leaving the charity a generous gift in his Will.

“A bequest is a logical extension of my MS ambassador role. It will help keep my work going after I’m gone.

It’s vital to help fund research that will lead to better treatments. The current drugs have unpleasant side effects. It would be great to have better ones available.”

He encourages others to follow his lead.

“If more of us do this, there will be better treatments to help people with MS lead more fulfilling lives.

It would be marvellous if we could tell people ‘yes, you have MS, but we’ve got treatments to ensure it won’t get worse.’”

But a cure would be even better.

“It might not be there in time to help me, but if my gift can help others receive a cure, that’s a good thing in my book,” said Nigel.

You can help fast–track a cure as well.

You can fund more brilliant research, and make sure services and support continue to give people like Nigel the best possible quality of life — by leaving a gift in your Will. Even 1% or 2% of what is left after gifts to family and friends can make a huge difference. It costs nothing now, but changes so many lives into the future.