Creating A Christmas Retention For A Huntington’S Family

As he piece of cake succumbs to Huntington’s disease, Dan Boyle of Bakersfield, CA, is edifice a legacy for his five-year-old at-risk boy Colby to hollo back when the symptoms brand impossible his greatest professional person love: conducting music.

On the eve of Dec 19, amongst his musically inclined married adult woman Audrey as well as Colby present, Dan, 45, volition Pb the Poway High School Band inward a functioning of “Russian Christmas Music,” the slice that inspired him to pursue a musical career when he played trumpet inward the band inward the mid-1980s.

“Every facial expression of music is cool,” Dan said every bit nosotros sat exterior the Poway High band room this forenoon afterwards he conducted a half-hour rehearsal of the vocal along amongst 175 band members. “I simply desire him to reckon this detail aspect. He tin already selection upward my trumpet as well as brand a sound. He’s been to all our performances. The to a greater extent than avenues he tin see, the better.”

Influenza A virus subtype H5N1 tradition to a greater extent than than 3 decades old, the annual Poway High Winter Band Concert involves band alumni inward the performance. This year, because of Dan’s popularity as well as his handle against HD, alumni from to a greater extent than or less the Earth as well as every bit far off every bit Nihon volition see as well as play their instruments nether his direction.

“He’s the final individual inward the Earth that deserves this, although nosotros knew in that location was a possibility,” said Ron Schei, a childhood friend who lives close Toyko, referring to Dan’s diagnosis as well as his family’s history of HD. “It’s simply a horrible, horrible thing.

“It’s a beautiful event. It’ll live of import for Dan as well as for us. And if it leads to to a greater extent than awareness – most people don’t know most Huntington’s – as well as brings inward some donations for the cure, it’ll possess got a positive effect.”

“They desire to portion that experience amongst him,” Sylvester Sybilski, the assistant band director, said of Dan’s friends. “That’s what I think is touching everyone’s heart: how he’s trying to create these moments for his boy as well as videotape them then that eventually, when the affliction gets the best of him, his boy volition possess got a tape of all these events he’s going to live doing for the adjacent five, 10 years.”

Christmas this twelvemonth has a special important for Dan. “Seeing how many friends are coming, it actually makes you lot experience good,” he said.

Ron Schei (left) amongst friends Colby as well as Dan Boyle at Poway High School (photo past times Gene Veritas)

The offset symptoms

Over the years, Dan had garnered recognition for his musical talent as well as leadership. Influenza A virus subtype H5N1 native of Rancho Bernardo, CA, he was utilisation of a Earth champion drum corps squad at the University of California, Los Angeles, where he as well as Audrey met piece both receiving degrees inward music education. In Bakersfield, CA, where the distich worked every bit music educators, he was instructor of the twelvemonth at Highland High School, as well as inward Kern County he was named jazz educator of the year, orchestra educator of the year, as well as band managing director of the year.

However, Dan’s fate would include an run into amongst HD. His mother, aunt, as well as grandmother all died of HD. He offset noticed symptoms inward himself inward 2009 as well as received an official diagnosis inward 2010.

After to a greater extent than than a decade of employment, he was no longer able to work. He receives a world schoolhouse teacher’s pension as well as Social Security disability, piece Audrey, 40, continues to go every bit a junior high schoolhouse music instructor as well as band director.

In a typical progression of hard disk symptoms, Dan said that he tin no longer multi-task, as well as his short-term retentivity is bad.

“Packing yesterday, in that location were 3 dissimilar times when I went to larn the same item,” he said amongst a chip of a chuckle. “In the large realm of things, I would rather possess got short-term than long-term retentivity loss. Long-term is your existent memories. Short-term is convenience.”

Fear of falling

hard disk is also affecting him physically. He has a all the same mild version of the involuntary movements experienced past times most hard disk patients. His eyes displace irregularly or sometimes appear to stare into space, as well as his human face upward freezes up. He also has some difficulty inward speaking.

“I used to hike as well as ski,” Dan said. “I was never rattling fast, but I hiked the Grand Canyon rim to rim dorsum inward 2005.

“I simply started to experience weaker. I hadn’t gone skiing since Colby was born, as well as final wintertime nosotros went. Before I was diagnosed, I could do the intermediate slopes. (This time) I was on the easiest gradient in that location was, as well as I savage similar 10 times.”

He adds, chuckling, “I possess got no sense of balance! I think I know when to say when.”

Falling presents the biggest threat to Dan’s health. He lately needed to have staples for a gash he suffered on his head. During our conversation, he turned his caput to exhibit me a rattling large, cerise bump on the dorsum of his caput from some other autumn simply yesterday.

He plans to start using a motorized wheelchair soon.

Dan also suffers from diabetes caused past times some other genetic condition, hemochromatosis.

“I won the lottery, I guess,” he said amongst a laugh.

The conductor’s passion

However, HD’s onset has non stopped Dan from conducting 1 time to a greater extent than for the offset fourth dimension inward several years. In today’s rehearsal of “Russian Christmas Music,” he sat inward a conductor’s chair as well as volition do then 1 time to a greater extent than at the concert.

“I conducted ever day, v hours a day,” Dan recalled. “When you lot learn music, you lot stand upward all day. It would never bother me, fifty-fifty a piffling bit.

“Over the final half-dozen to 8 months, I possess got noticed an extreme shrinking of the fourth dimension that I tin stand upward without pain.”

Sylvester as well as band managing director Mike Cook are “bending over backwards” to larn inward possible for him to conduct, Dan said. He happily complied amongst Mike’s asking for a taped audition.

Poway High School band managing director Mike Cook (left) as well as assistant managing director Sylvester Sybilski (photo past times Gene Veritas)

“You tin easily ruin a functioning every bit a conductor, as well as because the marking is an advanced score, he simply wanted to brand certain I could all the same do it,” Dan said.

Although Dan experienced some hard disk movements during the rehearsal, he successfully finished the slice along amongst the students.

“’Russian Christmas Music’ is a rattling challenging slice of music,” said Sylvester. “So, fifty-fifty for someone inward perfect health, it would live a challenge. I think it went rattling well.”

“His hear seems pretty clear,” noted Mike, adding that Dan has “an extremely brilliant wit” as well as an “obviously all the same strong” sense of humor.

“It’s a pretty cool feeling to larn to command all that audio at 1 time as well as possess got it response to you,” Dan said of the go of conducting. “I couldn’t believe I didn’t actually possess got whatsoever skillful videos of me conducting. I possess got lots of me playing, but non of my conducting. I’m glad they gave me the chance to do this.”

You tin spotter the rehearsal inward the video below.

'Russian Christmas Music' Conducted past times Huntington's Disease Patient Dan Boyd from Gene Veritas on Vimeo.

Planning a time to come for Colby

Dan is also writing an autobiography he wants Colby to read someday. It volition include fatherly advice for a immature man. It volition also address the family’s experience amongst HD.

During our interview, Colby sat adjacent to Dan. Engrossed inward a hand-held video game, Colby raised v fingers when asked to tell his age.

Like many hard disk families, the Boyles faced hard decisions. Colby was born non long earlier Dan’s symptoms began. Even though the distich knew of Dan’s risk for HD, he had non been tested. Nor did they resort to methods for avoiding the transmission of the mutation. They preferred to permit life possess got its natural course.

“Obviously I worried most passing it on,” said Dan. “I simply figure there’s ever promise for the cure. He could larn striking past times a double-decker tomorrow. I could, too. I got a scholarship to UCLA. I played trumpet inward xl of the 50 states. I’ve travelled. I’ve done a lot of skillful things. Hopefully he’ll live able to experience those things earlier whatever.”

However, Dan as well as Audrey are proactive most his HD. They maintain informed most the latest developments inward hard disk research. They attended the annual convention of the Huntington’s Disease Society of America inward Jacksonville this twelvemonth as well as inward Las Vegas inward 2012. Dan is also participating inward a clinical trial to examine the efficacy of the supplement creatine. He plans to go inward whatsoever other trial for which he qualifies inward the future.

“I simply desire to brand sure, whether Colby has it or not, that I’ve done everything possible to assist the drive of research,” Dan said. “That’s 1 of my large responsibilities. When I was a kid they said, ‘Oh, you lot don’t actually possess got to worry most it, because past times the fourth dimension you’re sometime enough, they’ll possess got it cured.’ I hollo back hearing that fourth dimension as well as fourth dimension again. But that didn’t happen.”

It’s never besides late

For now, Dan is taking wages of every moment.

He uses music, peculiarly playing the trumpet, to endeavor to stave off the impact of hard disk on his brain.

“There’s then many decisions every 2d inward music,” he said. “It's unbelievable how active your encephalon is piece you’re playing.”

He, Audrey, as well as Colby volition pass Christmas at domicile inward Bakersfield – preceded, of course, past times Dan putting out milk as well as cookies for Colby as well as Santa Claus.

Audrey didn’t believe people all the same did that. “She flora out the hard way,” Dan said.

“One of the silverish linings of this is, because I am domicile for Colby, I feed him every day, I give him his bath, I launder his clothes, I do his homework amongst him, I read to him,” Dan said. “We possess got a actually unopen relationship.”

Dan has a uncomplicated message for the hard disk community, 1 he volition set into exercise on Dec 19: “It’s piece of cake to take away as well as simply larn into a shell, but it’s never besides belatedly to do some of the things that you’ve ever done.”

(The wintertime concert, which volition possess got identify inward the Poway High School gymnasium, starts at 7. The lawsuit is opened upward to the public. Admission is $5. The band directors recommend arriving early on to obtain seating. The schoolhouse is located at 15500 Espola Road.)

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