Creating a Christmas memory for a Huntington’s family

As he slowly succumbs to Huntington’s disease, Dan Boyle of Bakersfield, CA, is building a legacy for his five-year-old at-risk son Colby to remember when the symptoms make impossible his greatest professional love: conducting music.

On the evening of December 19, with his musically inclined wife Audrey and Colby present, Dan, 45, will lead the Poway High School Band in a performance of “Russian Christmas Music,” the piece that inspired him to pursue a musical career when he played trumpet in the band in the mid-1980s.

“Every aspect of music is cool,” Dan said as we sat outside the Poway High band room this morning after he conducted a half-hour rehearsal of the song along with 175 band members. “I just want him to see this particular aspect. He can already pick up my trumpet and make a sound. He’s been to all our performances. The more avenues he can see, the better.”

A tradition more than three decades old, the annual Poway High Winter Band Concert involves band alumni in the performance. This year, because of Dan’s popularity and his struggle against HD, alumni from around the country and as far off as Japan will visit and play their instruments under his direction.

“He’s the last person in the world that deserves this, although we knew there was a possibility,” said Ron Schei, a childhood friend who lives near Toyko, referring to Dan’s diagnosis and his family’s history of HD. “It’s just a horrible, horrible thing.

“It’s a beautiful event. It’ll be important for Dan and for us. And if it leads to more awareness – most people don’t know about Huntington’s – and brings in some donations for the cure, it’ll have a positive effect.”

“They want to share that experience with 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 son and videotape them so that eventually, when the disease gets the best of him, his son will have a record of all these events he’s going to be doing for the next five, ten years.”

Christmas this year has a special meaning for Dan. “Seeing how many friends are coming, it really makes you feel good,” he said.

Ron Schei (left) with friends Colby and Dan Boyle at Poway High School (photo by Gene Veritas)

The first symptoms

Over the years, Dan had garnered recognition for his musical talent and leadership. A native of Rancho Bernardo, CA, he was part of a world champion drum corps team at the University of California, Los Angeles, where he and Audrey met while both receiving degrees in music education. In Bakersfield, CA, where the couple worked as music educators, he was teacher of the year at Highland High School, and in Kern County he was named jazz educator of the year, orchestra educator of the year, and band director of the year.

However, Dan’s fate would include an encounter with HD. His mother, aunt, and grandmother all died of HD. He first noticed symptoms in himself in 2009 and received an official diagnosis in 2010.

After more than a decade of employment, he was no longer able to work. He receives a public school teacher’s pension and Social Security disability, while Audrey, 40, continues to work as a junior high school music instructor and band director.

In a typical progression of HD symptoms, Dan said that he can no longer multi-task, and his short-term memory is bad.

“Packing yesterday, there were three different times when I went to get the same item,” he said with a bit of a chuckle. “In the big realm of things, I would rather have short-term than long-term memory loss. Long-term is your real memories. Short-term is convenience.”

Fear of falling

HD is also affecting him physically. He has a still mild version of the involuntary movements experienced by most HD patients. His eyes move irregularly or sometimes seem to stare into space, and his face freezes up. He also has some difficulty in speaking.

“I used to hike and ski,” Dan said. “I was never very fast, but I hiked the Grand Canyon rim to rim back in 2005.

“I just started to feel weaker. I hadn’t gone skiing since Colby was born, and last winter we went. Before I was diagnosed, I could do the intermediate slopes. (This time) I was on the easiest slope there was, and I fell like ten times.”

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

Falling presents the biggest threat to Dan’s health. He recently needed to receive staples for a gash he suffered on his head. During our conversation, he turned his head to show me a very large, red bump on the back of his head from another fall just yesterday.

He plans to start using a motorized wheelchair soon.

Dan also suffers from diabetes caused by another genetic condition, hemochromatosis.

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

The conductor’s passion

However, HD’s onslaught has not stopped Dan from conducting again for the first time in several years. In today’s rehearsal of “Russian Christmas Music,” he sat in a conductor’s chair and will do so again at the concert.

“I conducted ever day, five hours a day,” Dan recalled. “When you teach music, you stand all day. It would never bother me, even a little bit.

“Over the last six to eight months, I have noticed an extreme shrinking of the time that I can stand without pain.”

Sylvester and band director Mike Cook are “bending over backwards” to make it possible for him to conduct, Dan said. He happily complied with Mike’s request for a taped audition.

Poway High School band director Mike Cook (left) and assistant director Sylvester Sybilski (photo by Gene Veritas)

“You can easily ruin a performance as a conductor, and because the score is an advanced score, he just wanted to make sure I could still do it,” Dan said.

Although Dan experienced some HD movements during the rehearsal, he successfully finished the piece along with the students.

“’Russian Christmas Music’ is a very challenging piece of music,” said Sylvester. “So, even for someone in perfect health, it would be a challenge. I think it went very well.”

“His mind seems pretty clear,” noted Mike, adding that Dan has “an extremely bright wit” and an “obviously still strong” sense of humor.

“It’s a pretty cool feeling to get to control all that sound at once and have it respond to you,” Dan said of the work of conducting. “I couldn’t believe I didn’t really have any good videos of me conducting. I have lots of me playing, but not of my conducting. I’m glad they gave me the opportunity to do this.”

You can watch the rehearsal in the video below.

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

Planning a future for Colby

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

During our interview, Colby sat next to Dan. Engrossed in a hand-held video game, Colby raised five fingers when asked to tell his age.

Like many HD families, the Boyles faced difficult decisions. Colby was born not long before Dan’s symptoms began. Even though the couple knew of Dan’s risk for HD, he had not been tested. Nor did they resort to methods for avoiding the transmission of the mutation. They preferred to let life take its natural course.

“Obviously I worried about passing it on,” said Dan. “I just figure there’s always hope for the cure. He could get hit by a bus tomorrow. I could, too. I got a scholarship to UCLA. I played trumpet in 40 of the 50 states. I’ve travelled. I’ve done a lot of good things. Hopefully he’ll be able to experience those things before whatever.”

However, Dan and Audrey are proactive about his HD. They keep informed about the latest developments in HD research. They attended the annual convention of the Huntington’s Disease Society of America in Jacksonville this year and in Las Vegas in 2012. Dan is also participating in a clinical trial to examine the efficacy of the supplement creatine. He plans to enter any other trial for which he qualifies in the future.

“I just want to make sure, whether Colby has it or not, that I’ve done everything possible to help the cause of research,” Dan said. “That’s one of my big responsibilities. When I was a kid they said, ‘Oh, you don’t really have to worry about it, because by the time you’re old enough, they’ll have it cured.’ I remember hearing that time and time again. But that didn’t happen.”

It’s never too late

For now, Dan is taking advantage of every moment.

He uses music, especially playing the trumpet, to try to stave off the impact of HD on his brain.

“There’s so many decisions every second in music,” he said. “It's unbelievable how active your brain is while you’re playing.”

He, Audrey, and Colby will spend Christmas at home in Bakersfield – preceded, of course, by Dan putting out milk and cookies for Colby and Santa Claus.

Audrey didn’t believe people still did that. “She found out the hard way,” Dan said.

“One of the silver linings of this is, because I am home for Colby, I feed him every day, I give him his bath, I wash his clothes, I do his homework with him, I read to him,” Dan said. “We have a really close relationship.”

Dan has a simple message for the HD community, one he will put into practice on December 19: “It’s easy to withdraw and just go into a shell, but it’s never too late to do some of the things that you’ve always done.”

(The winter concert, which will take place in the Poway High School gymnasium, starts at 7. The event is open to the public. Admission is $5. The band directors recommend arriving early to obtain seating. The school is located at 15500 Espola Road.)

One Man's Story: Entering the Light

(At the invitation of the Huntington’s Disease Society of America [HDSA], I wrote this article for the September 2011 issue of the HDSA support group newsletter We Are HDSA!)

By Gene Veritas, author of At Risk for Huntington’s Disease and recipient of the 2011 HDSA Person of the Year award

As a severely disabling and fatal brain disorder, Huntington’s disease carries a deep stigma that often leads individuals and even entire families to hide the truth about their situation.

In learning of my mother’s diagnosis of HD on the day after Christmas of 1995, I wanted to get tested immediately. However, my mother’s geneticist and the president of the local HDSA chapter warned me against rushing into a test. They pointed out that gene-positive individuals sometimes faced discrimination from employers and insurance companies. So I postponed testing, and I kept my at-risk status private.

I thus entered the “HD closet,” a terrible and lonely place where I struggled with the wrenching fears of HD as I watched my mother decline.

In June 1999, I tested positive for HD. That life-jolting event caused me to retreat even deeper into the closet.

I lived in the grips of a massive contradiction: activism for HDSA and the need to shield myself from discrimination.

Enthusiastically, but anonymously, I served on the board of the San Diego Chapter of HDSA from April 1998 to October 2010.

In 2005 I started the blog At Risk for Huntington’s Disease. To protect my identity, I adopted the pseudonym “Gene Veritas,” the “truth in my genes.” Since then I have written regularly about the many challenges of HD – including the deeply frustrating experience of the HD closet.

But I knew that, if I wanted to truly defeat stigma, I someday would have to exit the closet.

Thanks to a combination of factors, in 2010 I began giving public speeches about my situation, using my real name.

Now in my fifties, I feel I have sufficient gravitas to negotiate the inevitable complications, including discrimination. Crucially, two pieces of federal legislation have given me and other gene-positive people support: the Genetic Information Nondiscrimination Act (GINA) of 2008, which bars certain kinds of discrimination, and the 2010 health-care reform law (the Patient Protection and Affordable Care Act), which, in 2014, will prohibit denial of coverage to people with pre-existing conditions.

Most importantly, HD researchers are making great progress, giving me the confidence that an eventual treatment or cure would end the HD closet forever.

From the scientists, I have begun learning that the closet poses a huge obstacle to their work. Without the active participation of our community in clinical trials and other experiments, the researchers cannot test potential treatments for safety and efficacy.

In my new role as a public advocate and as the 2011 "HDSA Person of the Year," I urge everybody in our community to get involved, summoning up the courage we know we possess to exit the terrible and lonely HD closet.

You can make a difference in many ways: by attending the local HD support group, volunteering for your local chapter or affiliate, and joining in HDSA’s advocacy and fundraising efforts. I also sincerely believe that if you are at risk, you should seriously consider the possibility of genetic testing.

You can also contact your local HDSA chapter or Center of Excellence to learn more about observational and clinical trials.

Above all, as we exit the HD closet hand in hand, it’s time to tell a friend or relative about Huntington’s disease and how it affects your family’s life. Your personal testimony provides the most effective way to fight stigma, inspire others to join the cause, and build awareness about the need to defeat HD.

Enjoying the life we have left

Confronting Huntington’s disease is a full-time job. Families and caregivers must constantly watch over their stricken loved ones. At-risk individuals often struggle for years over the decision to get tested. And asymptomatic gene-positive people like me wonder daily when and how the symptoms will strike.

One big lesson that at-risk and asymptomatic HD-positive people need to learn is that we all need and deserve to take a break from time to time. If not, worrying about the disease can completely consume our energies and leave us frustrated with the fact that we have given our lives over to HD.

Lately I’ve had this feeling myself. I have become overwhelmed with worry about HD and the movement to stop it.

So I decided it was time for my own break.

Preserving the candle

On October 15, I met up with Dr. Martha Nance at a reception for the Huntington Study Group (HSG) scientists participating in a research conference in San Diego. Dr. Nance is a specialist in HD and other brain disorders and regularly reads my blog. We attended Yale together in the late 1970s.

Dr. Nance pulled me aside and offered some friendly advice. “I’m not your physician,” she said with a shy and caring smile. “But your recent blogs have concerned me. Don’t feel that you have to do the blog every week. It’s okay to do less, especially because you’ve done so much. Don’t burn the candle at both ends.”

She had caught me in the midst of yet another streak of HD-related activities: working dinners, meetings, and visits to local drug-discovery companies focusing on treatments for HD. The next morning, a Saturday, I awoke early to return to the conference site to listen to HSG scientists present some of the latest research news. I didn’t get home until late afternoon.

I indeed had done a lot with the HD movement, but the fear of getting symptoms and my commitment to the movement left me feeling as if I had the world on my shoulders. Dr. Nance’s words helped remove a huge part of that burden.

Wisdom about HD and life

They also led me to ponder my next steps in the HD movement and my strategy to stave off symptoms.

I remembered how one at-risk board member of the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego) resigned about the time I became involved with the chapter in the late 1990s. She had given many years to the fight, she said. Now it was time to enjoy her remaining time without symptoms.

We had that conversation before I tested positive in 1999. I remember feeling sad about her departure. We needed people like her in the fight! I couldn’t understand how she could apparently abandon a movement that might save her life.

Whenever one little voice tells me to quit, another quickly pipes up and urges me to keep going.

But now I am beginning to understand the wisdom of that former board member. She needed and deserved a break!

Nights at the computer

These feelings reached a crescendo in the days before HDSA-San Diego’s tenth annual Celebration of Hope Gala, a fundraiser supporting the local HDSA Center of Excellence for Family Services and Research and other HD programs.

I’ve helped with every one of these events, from placing copies of the chapter newsletter I edited onto each chair in the dining room to photographing and writing about the event for the newsletter and our website. One year I even had the winning bid on a great auction item: six tickets to the Macy’s Thanksgiving Day Parade in New York City.

I shared my many cross-cutting feelings about my years in the chapter with my wife, the most intimate witness to my attempts to cope with living positive for HD.

She agreed with the sentiments of Dr. Nance and that former board member.

“How many nights and weekends have you sat at the computer working on HD stuff?” she asked rhetorically. “Those were hours that you could have spent with me and our daughter. You could be exercising instead of sitting in front of the computer. That’s more important for your health.”

I didn’t regret my work, but it suddenly hit me how long I’ve been in this fight. Our daughter – the “miracle baby” who tested negative in the womb for HD – is ten. As she approaches her teens, she will need a strong and healthy father.

If I take good care of myself, I’ll have a better chance of being that father.

My wife was sitting in the bathroom, where she was drying off our dog after a bath with anti-flea shampoo. I sat down next to her to help.

“How rarely I sit down with my family in the evening to relax because of this ‘third job’ with HD!” I wrote later in my blog notes.

The blessed nap

For this year’s gala I came up with the idea to include the international spokesman for the HD cause, Charles Sabine, the Emmy Award-winning former correspondent for NBC television. Charles is HD-positive. I helped organize his part in the October 22 program and also his stimulating visit to our local support group on October 25.

While eating dinner a few nights before the gala, Charles and I exchanged strategies for avoiding symptoms. We’re both 50, so I felt an especially tight bond with him. We talked about supplements, exercise, diet, alcohol consumption, the effects of jet lag on the brain (Charles is English and passed through seven times zones to reach California), and other factors.

Charles tested positive for HD in 2005, and so far he doesn’t show any of the classic symptoms of HD. Over the past several years he has traveled widely to help raise the profile of HD, giving interviews, meeting with HD patients and their families, and speaking at research conferences and other events.

We heartily agreed that ample sleep is probably one of the best strategies for reducing stress and resting the brain. We both try to get a full night’s rest. And we try to nap daily. (By coincidence, I heard a radio report this morning stating that people who get nine hours of sleep per day have better brain performance than those who sleep fewer hours.)

“The blessed nap,” I wrote in my blog notes. “Two 50-year-old at-risk men discussing their naps. Would sound hilarious if it weren’t so dead serious.”

A big night

Speaking to the audience about the distressing experience of living HD-positive, Charles helped set the tone for the evening. One of Charles’ biggest worries is that he won’t be able to share life with his two-year-old daughter Breezy, another “miracle baby” who is negative for HD.

We also received news of great hope: the day before the gala, the California state stem-cell research agency awarded a grant of $3.8 million to Dr. Leslie Thompson of the University of California, Irvine, to investigate potential stem-cell treatments for HD. Along with HD advocates from around the state, HDSA-San Diego spearheaded the effort to make curing HD a priority of the stem-cell agency.

Later in the program I visited the table purchased by Vertex Pharmaceuticals, whose San Diego office has begun seeking possible treatments for HD. Vertex’s commitment to the gala coincided with a presentation about my family’s struggle with HD that I made at the company on September 24.

I thanked Paul Negulescu, the Vertex vice president for research and the head of the San Diego facility, and Beth Hoffman, the vice president of biology, for their commitment to HD, and I greeted all of the eight scientists seated with them. They were the largest delegation of HD scientists in the history of the event.

In addition to Vertex, dozens of other sponsors supported the event, including title sponsor Qualcomm and the presenting sponsor, the Viejas Band of Kumeyaay Indians.


Dr. Leslie M. Thompson of UC Irvine received a $3.8 million grant for HD stem-cell research.


Paul Negulescu and Beth Hoffman at the Vertex San Diego site in La Jolla (photo by Gene Veritas)

Former NFL star quarterback Phil Simms (right) coaches Englishman Charles Sabine (photo by Gene Veritas)

HD is priority: Charles (left) and CBS announcer Jim Nantz helped set the tone for the evening (photo by Gene Veritas)

The evening’s entertainment featured a fun panel discussion with CBS television’s National Football League announcers and producers, including icons Phil Simms and Jim Nantz.

Jim closed the evening with a moving recollection of his own family’s coping with his father’s struggle with Alzheimer’s disease. He reminded the audience that their support of the HD movement was their most important reason for being in the room.

Resigning from the board

As I left the dining room at the end of the evening, I knew I had done my small part to help make it a success. The final tally isn’t in yet, but once again the chapter brought in tens of thousands of dollars for the HD cause and, just as important, increased awareness about the disease.

With a deep sense of accomplishment – but also with the wisdom afforded me by Dr. Nance and that former chapter board member – I decided to resign from the board.

“I’ve put in 12 and a half years working on practically every aspect of our chapter,” I wrote the board. “Lately I have been overwhelmed with HD commitments and need to scale back. As a person who is gene-positive for HD and luckily escaped symptoms so far, I must now concentrate on maintaining my health and spending more time with my family.”

I pledged to continue as a volunteer, concentrating on this blog, articles on HD-affected individuals and families, and reports “about research developments in order to help create hope.”

Feeling more 'normal'

Instead of board meetings, I will once again attend the support group, “my roots in HDSA.” As I’ve written before, HDSA needs to rediscover its initial mission of care. Also, I personally need to care for my own health and family while I can.

I also committed to promoting the chapter “through contacts with local pharmaceutical companies, public talks, assistance to scientists, and my collaboration with CHDI,” the multi-million-dollar “cure Huntington’s disease initiative.”

I’m not abandoning the movement. Far from it.

But I’m going to focus my energies more efficiently, and more towards my family.

And, like that other former board member, on living the life that I have left without symptoms. To live, if at least for just brief moments, as if HD doesn’t exist!

“It’s nice to feel ‘normal’ once in a while!” I wrote in my blog notes a couple days after resigning. “I haven’t felt ‘normal’ for a long time – fears and militancy constantly put me on edge. Need to get off this edge from time to time.”

Progress and optimism

It’s also important for me to take stock of the progress our movement has made – evident in Dr. Thompson’s grant and the many potential treatments being identified by researchers. When my mother was first diagnosed with HD in 1995 (she died in 2006 at age 68), there were no targets!

Today there are more than 700 potential targets! Vertex and other companies and research projects may soon have drugs that reach those targets. (I’ll be blogging soon on Vertex and other research developments.)

That sense of progress gives me hope and confidence that a treatment, and perhaps even a cure, will be found in my lifetime.

“We’re not alone,” I wrote in my blog notes. “The scientific community is out there fighting.”

Of course, nobody can guarantee a treatment or cure. But at least now I can feel optimistic.

Yes, we in the HD community deserve a break, even if only occasionally. And we also need and deserve to fully experience attitudes like optimism. As short as our time may be, we all need to live – and enjoy – the life we have left.