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Music Teacher With MS Raises Funds for Students in Need

The vocalist and music teacher Josh Killingsworth performs less because of MS but remains committed to mentoring others.

By Stephanie Stephens

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Portland, Oregon, musician Josh Killingsworth performs, teaches, and arranges music.
Portland, Oregon, musician Josh Killingsworth performs, teaches, and arranges music.
Photos courtesy of Josh Killingsworth

He's got the music in him. And he shares it all around, eager to encourage and mentor others who understand music's power and influence.

As a private music teacher, Josh Killingsworth, 42, of Portland, Oregon, teaches singing, delivers singing telegrams, and arranges music for choral groups. He says he used to perform more before his diagnosis of multiple sclerosis (MS) 10 years ago.

"I don't sing as much because I can't stand for very long at a time," he says. In the past, he has sung with prestigious groups such as the Portland Symphonic Choir, Opera Theater Oregon, and onstage with Linda Ronstadt. To get there, he was diligent about training, utilizing classical voice lessons, opera coaching, jazz lessons, choral singing, and voice technique classes, as well as accruing plenty of valuable solo experience.

“Performing these days mostly comes in short snippets when I deliver ‘A Rose and a Song' singing telegrams,” he says.

Since 2011, he's wanted to help anyone who's motivated — the way he's always been — to sing and succeed. "Musicianship, self-awareness, good vocal technique, and fun are emphasized in a supportive, productive environment," he says. His students go on to win regional and state contests, scholarships, and admission to conservatories.

"I love music and I love teaching — I can't imagine doing anything else," says Killingsworth.

First MS Symptoms Felt Like Lightning

Killingsworth vividly recalls feeling his first MS symptoms at age 28, especially the day he went up for a jump during a basketball game.

"It felt like a lightning bolt hit my arm," he says. "It didn't happen consistently, and I was working in a warehouse, so I thought that was the cause. Later, my entire right side went numb, then my stomach area and my face. When that cleared, I would go to the gym but get tired so quickly that my legs would buckle and I would fall off the treadmill."

Even as his symptoms increased, the term "MS" didn’t come up in conversations with his doctor. "Then I began urinating too much, 15 times a day or more, and that changed things," he says. He was rushed to a urologist and a neurologist to find some answers.

An MRI showed lesions characteristic of multiple sclerosis, and he also underwent a lumbar puncture (spinal tap) “seven times before it succeeded," he says.

His neurologists have not always been encouraging. "I've seen six or seven, and liked about half of them," he says with a chuckle.

RELATED: Multiple Sclerosis: Getting Through a Spinal Tap

MS Medication Trials and Tribulations

Killingsworth’s experience with disease-modifying medications and medications to control his symptoms hasn't been easy.

Rebif (interferon beta-1a) caused 24 hours of flu-like symptoms each time he took it. "I'd stare at the needle for up to four hours trying to work up the nerve to poke myself," he says. "It hurt and I had weird welts on my skin."

He also couldn't stay the course with Copaxone (glatiramer), giving up on it after several years. Killingsworth now takes Tecfidera (dimethyl fumarate) and says it causes some flushing symptoms on his face. "I look like a tomato," he says.

For his excessive urination, he was prescribed terazosin but discovered he was in the very low percentage of people who pass out as a side effect. He even fell and cut himself across the chest. After that, he was prescribed Ditropan (oxybutynin), but the side effects became unbearable.

According to Killingsworth, the Ditropan caused him to stop sweating, and his throat was so dry he couldn't sing. "I just couldn't drink enough water," he says.

Now he takes Myrbetriq (mirabegron) for the urination and says he has saliva production again and isn't "smacking" so much.

Spasticity does frustrate him, he says. "My muscles feel like they're squeezing hard, like the worst bear hug." He takes baclofen daily to counter those symptoms.

Fatigue is a scourge, "always there," he says. "Sometimes it's annoying, sometimes crippling." He blames it on his MS and on the side effects of his medications. Even with fatigue, he can't sleep soundly because of "spasticity, pain, leg spasms, and my overactive brain worrying about health or insurance paperwork."

RELATED: Getting a Good Night’s Sleep When You Have MS

Managing MS With Planning, Exercise, and Diet

These days Killingsworth is prepared to manage his MS no matter where he goes. "I always have a fold-up cane with me," he says. And before he goes, he makes a plan. "If I'm going to a show, I leave an hour and a half early to find parking and find a seat close to the bathrooms and away from stairs. I have to be super-organized."

Committed to maintaining strength, he goes to the gym in the mornings, when he's fresh. But he no longer uses the treadmill or the elliptical machine.

"My legs aren't strong enough, but I can do some yoga positions, and some machines work pretty well for me," Killingsworth says. "And I try to keep my legs moving, to retrain the pathways between the brain and my body parts that need it."

He admits to being a bit of a nutritional extremist, "either on a super-strict diet or eating whatever I want." He does try to stick with the Wahls Protocol, an "intense, anti-inflammatory diet," he says.

In the face of his challenges, he enjoys a sense of humor and tries to keep a positive focus on things he can do — "not all the things I can't do. If I can't do something the way I used to, I modify it."

Raising Funds for Talented Kids' Lessons

Killingsworth refuses to let MS get in the way of his creativity or his devotion to his students, many of whom can't afford to take lessons. He's also found he can't afford to give too many lessons away, so one of his friends started a GoFundMe scholarship campaign online in January 2019 to raise money for financially challenged students so they can continue studying with him.

"I teach amazing students — many of them have the talent and love of music to get college scholarships," he wrote online.






Video: Music in a Dark World

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Date: 18.12.2018, 14:47 / Views: 83331