World MS Day celebrated through music and virtual connection

Heather James, a fieldworker for the MS Wanganui Society, wants to educate the wider community on the debilitating chronic condition and its effects. Photo / Bevan Conley

Whanganui multiple sclerosis sufferers will join millions of others with the condition this weekend to celebrate global solidarity.

Multiple Sclerosis New Zealand has partnered with the MS International Federation to raise awareness and bring hope for the future by hosting the annual World MS Day on May 30.

MS Wanganui Society fieldworker Heather James said with events cancelled due to Covid-19, the theme will be building community connection, self-connection and connections to quality care.

Performances and messages by the MS community will be broadcast through the World MS Facebook page and YouTube.

There will also be a performance of Lean On Me by the global MS choir directed by Mark De-Lisser.

James is one of many people worldwide who suffer from the debilitating chronic condition that affects adults, mostly women, aged 20 to 60.

Diagnosed about 35 years ago, she said she is "one of the lucky ones". She has not had too much trouble and her MS has not progressed.

"I know one lady who was diagnosed probably three to four years ago and she is now so bad she can't walk and is confined to a wheelchair and she is beginning to have difficulty in swallowing and she's only in her 50s," James said.

Along with tiredness, another symptom can be brain fog.

"People have told me they've been out somewhere and got really unwell and people have thought they've been drunk whereas it's actually the MS."

James' wish is to educate the wider community that MS affects many people, but it may not be obvious because the symptoms may not be visible.

This is all too familiar for Whanganui Gatshack owner Craig Cawley who has suffered from MS for more than a decade.

One night 10 years ago Cawley went to bed with a sore back and found he could only feel the temperature of the electric blanket on one side of his body.

That began his MS journey and Cawley has had to use a walking stick to get around.

Although it has got better over the years and he can still play in bands, he said he cannot carry his own amplifiers and when he picks things up from the ground his legs stop working.

Recently Cawley suffered a stroke, causing him to lose movement in his left leg and partially in his left arm. Most of the feeling in his arm has returned but he is still working on his leg.

"I've battled through MS for 10 years, this is just another kick in the arse really but you've got to keep going - no point in stopping really."

Gatshack owner Craig Cawley has battled MS for more than 10 years. Photo / Paul Brooks

Cawley has donated a guitar to the Whanganui Hospital stroke ward that helped him to recover. "I donated the guitar to the stroke ward physio because they got me to get a guitar up there because it keeps your hand moving and keeps your brain moving."

Cawley had asked staff if they had musical instruments because he didn't think he could be the first guitarist in the stroke ward.

"They said they had shakers and things like that and I said no, you need a guitar."

Cawley said he is fortunate to receive Pharmac funding for pills that would cost more than $25,000 a year.

But he knows of others who cannot afford or are not eligible for the medication and he said they have really suffered.

"I think you have to be positive about it and I have been for years, you just have to get on with life. We just keep battling on. I go to work every day, I own my own business, I like being there."

He said there is always someone worse off.

"There's people out there that can't walk, they can't speak. I think I'm pretty lucky. Yeah, I've had some crap happen to me over the years but I like going to my business and I like what I do."

You can donate to the Whanganui MS society at http://www.mswanganui.org.nz/