Just living life: a focus on what matters most in coping with the risk of Huntington’s disease

As a carrier of the Huntington’s disease gene who’s reached the age of 56 without apparent HD symptoms, I believe that the emotional release associated with this blog – sharing my fears, hopes, and advocacy – has helped me stave off the inevitable onset of the disorder.

Ideally, I’d like to write in this blog weekly.

However, I don’t always have time, as evidenced by my taking nearly a month to post an update.

I regret the delay, because I have a growing list of critical developments in advocacy and research to report on, for example, the results of the 11th Annual HD Therapeutics Conference, held in February.

However, like so many people in this harried world, I juggle multiple demands involving family, career, and community.

Beyond that, those of us in the HD movement (and in other disease communities) have the added responsibility of caregiving, multiple forms of advocacy, and/or living with the disease or its threat.

Ever more conscious of life's brevity and my good fortune in remaining asymptomatic, I’ve been focusing on what matters most.

Being there for the family

One of my deepest fears about HD concerns losing the ability to support my family. Having seen my mother decline terribly because of HD, I long worried that I would become a financial and medical burden for my wife Regina and daughter Bianca, or, worse, that I might not see Bianca graduate from high school.

In my current stable health, I devote time and energy to helping Bianca transition from teenager to young adult.

A few weeks ago, I acquired a third family car so Bianca can drive my “old” Nissan Altima when she gets her license. While we’re fortunate to afford an extra car, it’s no luxury; it will allow her to drive to school, freeing Regina and me each from several hours of driving weekly. We also recognize that having a car is a rite of passage in America, especially in the auto-oriented culture of Southern California.

Once again, HD factored into our family decision-making: seeking to economize and plan prudently, we bought a used 2013 Honda Accord in good enough condition that, as Regina put it, could last me until retirement.

As my trusted mechanic put it, the four-cylinder Accord’s engine is “God’s gift to humanity” because of its reliability. As a teenager, I had always admired the Accord and daydreamed about owning one. Lately, I’ve come to detest driving because of the crazy Southern California traffic – I long for a mass-transit system like those in European cities – but the Accord has brought back some of the enjoyment.

Priority over the blog

I had planned on buying a car only when Bianca received her license later in the year, but a major connection in my HD journey saved me the headache of shopping for one by alerting me to the availability of the low-mileage Accord.

Rob Millum, a friend whom I met while serving on the board of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA) and also a former member of the HDSA national board, works as a consultant for Affinity Development Group and administers the Costco Auto Program.

Rob’s a natural leader who cares about serving humanity. With his auto dealer’s license he helps people save money on nearly new cars and recreational vehicles. He doesn’t need to work full-time but does so to help support the HD community and other causes.

Rob and I have had deep conversations about HD, this blog, and life in general. When I couldn’t attend the 2011 HDSA convention to receive the HDSA Person of the Year Award, Rob accepted the honor in my name.

And Rob’s a darn good car guy, too!

At 2011 HDSA national convention, HDSA Chairman of the Board Don Barr (left), Rob Millum, and HDSA CEO Louise Vetter as Rob accepts HDSA Person of the Year Award for Kenneth P. Serbin (aka Gene Veritas) (photo by Ashley Miller).

In 2010, Rob helped me purchase my 2011 Altima through Costco’s no-hassle program; his nephew was the salesman. I then parted with my 1999 Corolla, my so-called “DNA car,” which had those highly symbolic letters on the license plate and which had carried me through many miles of HD advocacy (click here to read more).

We had upgraded to the bigger, sturdier Altima for safety reasons. Now it will become Bianca’s car.

Dealing with my credit union’s loan department, figuring out the high-tech gadgetry of the Accord (the owner’s manual is 595 pages long!), and other details of the purchase took priority over this blog.

Other aspects of my HD advocacy have also reduced the time for the blog, for example, raising funds for the 2016 HDSA-San Diego Hope Walk, set for April 10 (click here to donate to our team). Support for HDSA is essential in the quest for treatments.

Just living life

Despite the new financial load of car payments along with our mortgage and other payments, I felt grateful about handling the details of the Accord purchase for my family.

It’s reminded me how quickly our “miracle baby” – who tested negative for HD in the womb in 2000 – is growing up. The toddler I used to push in a stroller at the zoo now practices driving the Altima on the freeway. We’re starting the search for colleges.

I also remind myself to focus on the basics to help avoid HD onset: a healthy diet, good sleep habits, and regular, vigorous exercise. I can get lackadaisical about all three!

Spending more time on the essentials, as well as enjoying life more fully, takes time away from HD advocacy and blogging.

I feel that I need a break from the din of the Internet, the 2016 presidential campaign, the TV commercials, the political crisis in Brazil (the country I research), the e-mails and Facebook postings concerning HD, and all the other things that diminish my peace of mind.

The Easter Vigil Mass I attended on March 26 provided a respite, with two hours of chanting and scriptural readings, a stark contrast with our daily lives outside the sanctuary.

Knowing how many of my symptomatic "HD brothers and sisters" valiantly cope with the disease, I’m thankful for the chance to just live life.

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.