Man with rare autoimmune disease says making music lifts his spirit up

A man who was diagnosed with a debilitating condition and lost the ability to use his hands and legs, was back performing music on stage in Edmonton recently.  

"With this condition, I know it's bringing me down, but I'm going to keep pushing and keep trying to get stronger and try to get better," said Nathan Steinhauer, who is from Saddle Lake Cree Nation, about 130 kilometres northeast of Edmonton.

Steinhauer, 46, was diagnosed with a rare disease called chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) In April 2020. It's an autoimmune disease that attacks the myelin sheath of nerves, causing weakness, paralysis and/or impairment in motor function, especially of the arms and legs.

"It's one of those conditions that could literally wipe out a person," he said.

"And when I first got it, I was so frustrated. I was getting mad because I couldn't do the stuff that I used to do."

Steinhauer has been in a wheelchair since and can no longer play the bass, rhythm guitar or drums — talents he picked up at an early age.

"When I listen to music … it gives me energy and gives me the will to keep going," he said.

After he was diagnosed with CIDP, he moved from Saddle Lake to Edmonton so he could do physiotherapy at Glenrose Rehabilitation Centre.

That's where he was introduced to musician Matt Day, the facilitator of the centre's Music Care program, which incorporates music into recreational therapy.

"If somebody was musical, he would come and visit them and even [perform] just a little simple jam with them," said Steinhauer. 

Lifting his spirit

Steinhauer said he bonded with Day through the program and enjoyed jamming with him.

They recorded some songs together in the hospital and Steinhauer gained enough confidence to get back on stage in September for his first live performance since being diagnosed with CIPD, performing in front of friends and family at Julian's Piano Bar in Edmonton.  

"When I sing, it lifts my spirit up. So that's why I keep going with it," said Steinhauer.

"I notice when you have a high spirit, it helps with healing. So that's why I do it."

Day said he noticed Steinhauer's talents as soon as he met him, and backed him up at the live performance. 

"He's got this real musical sense," said Day.

"It's just that he can't hold that instrument. He can't play right now, but he's still got this music inside him."

Day said programs like Music Care can give people a sense of hope while they deal with challenges.  

He was moved by Steinhauer's story and asked his friend Joel Tolhurst, a filmmaker, to document their performance in September.

"I really admire Nathan's tenacity and his outlook," said Tolhurst.

"I just respect his ability and his decision to say, 'I'm not going to let the CIDP dictate how I live my life and I'm not going to let any sort of constraints that have been put on my life actually hold me into a box. I'm going to keep living my life.'"

Moving home

Steinhauer's rehabilitation has seen some improvement. In June, he was able to stand on a treadmill and hopes to start walking again in the future.

"I know I'm not going to be 100 per cent, but I told my grandkids that I'd start walking for them, and start doing stuff with them again," said Steinhauer.

Part of what makes his rehabilitation challenging is that he is diabetic and had half of his foot amputated in 2013. He was also put on the list for a kidney transplant recently.

He said he plans to move back to Saddle Lake with his wife Rhonda Steinhauer, who he said is his biggest supporter.