A Huntington’s Thanksgiving message: gratitude for health and the ability to work

Thanksgiving, my favorite holiday, leads me to take stock of the many good things in my life.

First, I am thankful that I have not yet experienced the classic symptoms of Huntington’s disease. At year’s end, I will turn 54 – at least several years beyond the age of onset for my HD-afflicted mother. At my annual HD checkup last month, my neurologist said I was symptom-free.

After testing positive for HD at the age of 39 in 1999, I had expected to be incapacitated by now. Doctors and scientists still don’t know enough about HD to explain why someone like me has remained asymptomatic beyond the parent’s age of onset. As I have written in the past, I keep striving toward a well-informed strategy for avoiding onset.

I am thankful for many of the other reasons people celebrate Thanksgiving, especially family. My HD-free daughter is a thriving eighth grader, and next month my wife and I will commemorate 21 years of marriage.

This year, I am particularly thankful that, without the symptoms that typically disable HD people, I can still perform my job as a university professor.

The financial burdens of HD

This past Monday night, attending our local HD support group’s annual holiday potluck, I saw once again how Huntington’s causes the involuntary movements known as chorea and inexorably robs people of their cognitive abilities, severely hampering their capacity for work.

As a result, HD devastates families financially. When an HD-affected breadwinner loses his or her job, family income falls dramatically.

Other family members often must reduce their own work hours to help care for the sick individual. In some instances, they change occupations to adjust to care needs. They might even quit salaried work altogether.

As the story of caregivers Mike and Raima Fernald illustrates, local and state government assistance in such situations is sorely lacking. The HD community also has fought to improve access to Social Security benefits, denied to many because outdated government guidelines don’t account for HD’s cognitive and behavioral symptoms.

In the case of my parents, HD wiped out their “golden years.” Instead of enjoying retirement, my “HD warrior” dad became my mother’s full-time caregiver from the mid- 1990s until her death in 2006 at the age of 68.

Instead of trips and time with their grandchildren and friends, they struggled together to address my mom’s decreasing ability to walk, talk, and eat. In the last six months of her life, they spent several thousand dollars per month on nursing home care.

“HD is more than a disease,” I wrote as my heartbroken father precipitously lost his own cognitive abilities in the wake of my mother’s death. “It is a destroyer of families.”

One thing I fear most about the inevitable onset of my own HD is that it could put my family into a similar financial bind. Both my wife and I work full-time, and my salary currently accounts for more than half of our income.

“What if I become disabled before my daughter finishes college?” I frequently ask myself. “What if my wife must work many extra years to compensate for my lost income? What if I become a burden to my family?”

Happy to be busy

News reports about the needy at Thanksgiving remind me of the troubling backdrop to the holiday: the anemic state of our economy.

As a local radio report noted yesterday, “food stamp cuts that took effect this month will make Thanksgiving even harder for low-income San Diegans. A typical Thanksgiving meal will cost the average family nearly $50 this year, which is far beyond reach for the nearly half-million people in San Diego County who struggle every day to put food on the table — especially the 270,000 people who depend on food stamps for meals.”

So this Thanksgiving I am grateful that I can work, help support the household (including our daughter’s private school tuition), and save for the future. I’ve also enjoyed the present with family vacations and home improvements such as my just remodeled home office, which replaced a rickety and ugly setup persisting from my days as a frugal graduate student and starting assistant professor.

This year, I’m thankful for the health that has allowed me to have a highly productive year at the University of San Diego, where I am wrapping up my fifth calendar year as department chair. It’s been especially busy as my colleagues and I search to fill an exciting new position in the history of science, technology, and medicine.

With the gift of being asymptomatic, I’ve also maintained the pace of my HD advocacy, with major trips to Iowa in August and to the World Congress on Huntington’s Disease in Rio de Janeiro in September. Until today I’ve written 26 blog articles this year, my second-highest annual output since starting At Risk for Huntington’s Disease in 2005.

This is article No. 27, written with a deep sense of gratitude for the gift of life, family, and health – and the hope of effective treatments and a better future for the entire Huntington’s community.

Going with the flow of time

Like many in our fast-paced era, early in life I developed an acute sense of time. Patience with others, with life, and with myself was not one of my virtues.

After learning in 1995 that my mother had Huntington’s disease and that I had a 50-50 chance of inheriting the devastating mutation, my anxiety about the passage of time multiplied.

On one level, I definitely came to appreciate the preciousness of time – especially after testing positive for HD in 1999 and seeing my mother succumb to the disease in 2006 at the age of 68.

On another level, however, worries about time have continued to gnaw at my mind. I strive to enjoy life, providing for and spending time with my family, but also to create a legacy as a scholar, writer, HD advocate, and citizen. As I once wrote, “I’m squeezing as much as I can into my life before the symptoms start.”

‘Tricking’ time

For a long time I’ve believed that I can somehow trick time, getting more than 24 hours out of a day.

Not long after I had learned of my mother’s HD, one of my students asked me why I walked so quickly around the campus. “I have so much to do!” I replied while pondering my professional ambition and worrying about my vulnerability to the disease.

I frequently recall a radio segment about a former federal cabinet official whose ambition led him to obsess about reducing to the absolute minimum the time spent on each detail in getting ready in the morning.

Identifying with that attitude, I find it simultaneously fascinating and tragic.

Though I know that going to bed at a regular time contributes to good neurological health, I often stay up late, thinking that if I just squeeze in a bit more work or one more TV show, I’ll somehow have gotten more time out of the day.

So much of my life is tied to the mystery of time, including a self-esteem reliant on a sense of accomplishment and recognition. If it weren’t for this damned time, I could do so much more!

Defeating time is the avenue to feeling powerful, and toward the goal of defeating Huntington’s disease.

Ultimately, to defeat time is to defeat death itself. This desire is a not uncommon phenomenon as people age, but the specter of HD makes it unavoidable.

Counteracting anxiety

To counteract the anxiety about time and HD, I have employed some key strategies. I work with a psychotherapist, take medications to stave off anxiety and depression, and subscribe to the philosophy of Don’t Sweat the Small Stuff … and it’s all small stuff. I also try to exercise, live in the moment, and to connect with my spiritual dimension, for example, by attending Mass.

When brushing my teeth seems to take forever because I’m anxious about getting to a seemingly more important upcoming activity, I try to remember the advice of the Vietnamese Buddhist monk Thich Nhat Hanh to savor the simplest of experiences as part of the process of life.

I’ve also sought wisdom about time from the scientific minds of our era.

However, after reading biographies of Stephen Hawking and Albert Einstein, I’ve understood clearly how we are in the infancy of defining and comprehending the dimension called time.

We can’t even perceive time with our five senses – except for the fact that our bodies age and diseases like HD take their inevitable toll.

A terrible delusion

Last month, in a conversation with my psychotherapist, I came to the healthy realization about how I have deluded myself about tricking time.

A few weeks later, I departed with my family for a three-week trip in Europe.

Once again, vacation time provided me with a small but stimulating break from the routine of work and the challenges of living at risk for HD.

Amidst the excitement of visits to cities like Berlin, Prague, and Vienna, I maintained my daily morning meditation.

As we whisked through Europe, the mystery of time once again loomed.

I wanted to stop time so that the great moments with my family would never end.

Kenneth Serbin (left) with daughter Bianca and wife Regina on the Charles Bridge in Prague (family photo)

A revelation

However, during one moment of meditation, I had a mini-revelation about time.

I told myself: “You cannot trick time. You must be with time and part of time. You cannot go against time. You must accept it. You must flow with it.”

In the days since, I have felt a renewed sense of peace.

I don’t believe outcomes are preordained, but I do feel that I must no longer resist the flow of time.

I cannot extend my time. I must live with the amount I have as best I can.

I must approach life, including the threat of Huntington’s disease, with acceptance, even as I strive daily to make a difference.

Although scientists are working feverishly on potential clinical trials, treatments may not appear in time to save me.

I can help, I can hope, and I can wish progress for everyone in the HD community. But I cannot stop time to wait.

Junior Seau, Super Sunday, and our most important natural resource

As America prepares to celebrate the annual ritual of brutal competition known as the Super Bowl, the negative consequences of football on the brain have come under intense scrutiny.

On January 23, the family of Junior Seau – the famed 43-year-old former linebacker who committed suicide last May after 20 seasons of professional play – sued the National Football League (NFL) over the damage to Seau’s brain caused by concussions.

The family’s action came less than two weeks after the news that researchers at the National Institutes of Health (NIH), studying tissue from his donated brain, determined that he had suffered from chronic traumatic encephalopathy (CTE), a degenerative brain disease.

Junior Seau in the uniform of his final team, the New England Patriots 

In recent years, studies of the brains of dozens of other deceased players, including two who killed themselves, have revealed CTE.

Since August 2011, some 190 brain-damage suits have been filed representing more than 4,000 former players alleging negligence by the NFL. A federal court has consolidated those suits. The Seau family has not decided whether it will enter the joint suit.

According to Seau’s son Tyler and Seau’s ex-wife Gina, Seau’s behavior included depression, wild mood swings, forgetfulness, irrationality, and insomnia.

The HD community’s outlook

Like few others, those of us in the Huntington’s disease community comprehend the brain’s vulnerabilities.

In addition to many other problems, all of the symptoms seen in Seau occur with HD.

Suicide is also all too familiar to the HD community: it is the second leading cause of death in HD patients.

Over some 15 years, I watched HD rob my mother’s ability to walk, talk, think, and eat, reducing her to a mere shadow of herself as it killed her brain cells.

Since learning of my own risk for the disease in 1995, and especially after testing positive for the HD gene in 1999, I have strived to prevent the inevitable onset of symptoms by practicing good brain health (click here to read more) and learning how HD harms the brain (as reflected in numerous articles in this blog).

A more critical view of football

I’ve followed football on and off since my childhood in Ohio, where high school, college and professional football are hugely popular. When the San Diego Chargers – where Seau played 13 seasons – began supporting the HD cause in the late 1990s, I renewed my interest in the sport (click here to read about my enthusiasm).

However, as my knowledge of brain degeneration increased, I developed a more critical view of football’s violent nature. Nowadays I wince when I see a player hit hard on the head.

I don’t wish on anybody the ravages of HD – nor the degeneration of the brain that can occur from head injuries, whether from a bomb blast, a hockey punch, or a devastating tackle. President Obama recently said that, “if I had a son, I’d have to think long and hard before I let him play football.” I too am glad my daughter is not at risk to play a violent sport, although I do worry when she competes on the soccer field.

During remarks at the 2011 gala of the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego), NFL Commissioner Roger Goodell recognized the need to make football “safer.”

Needed: a national campaign

It may be impossible for public opinion to remove the fatal violence from a multi-billion-dollar industry that enthralls tens of millions of fans and resonates with our often bellicose culture. In the words of one observer, pro football is “America’s favorite blood sport.”

However, the player lawsuits could affect the owners’ profit margins, harm the league’s prestige, and force some measure of reform.

In response to the burgeoning concern about head injuries, the NFL last September donated $30 million to the NIH for research on the brain and other medical issues. In addition, as required by its collective bargaining agreement with the players’ association, the league has also announced an additional $100 million in planned spending on medical research.

In a commentary on the 2011 HDSA-San Diego gala, I expressed hope that the “NFL will make brain research a national priority at a time when HD, Alzheimer’s, and other brain disorders are beginning to strain our resources with a massive caregiving burden. Goodell, the NFL teams, and the league hold great sway in our society and have the power to mobilize people in a grand cause.”

Indeed, we need much more than $130 million and an NFL commissioner for this effort. We need a national campaign for the brain, including education about brain health and incentives for young people to become brain researchers.

As we cheer on the players on Super Sunday, let’s also remember the devastating impacts of business as usual – and to cheer for the protection of our most important natural resource: our brains.

To strive or to chill? Seeking balance in the fight against Huntington’s disease

In late 1995, after I received the shocking news that my mother had Huntington’s disease, I decided to fight back for her by learning all that I could about this incurable disorder and also advocating for treatments and a cure.

Then, after testing positive for the HD gene in 1999, I sought to save myself by finding ways to stimulate my brain in order to stave off the inevitable neurological symptoms.

As I worked to maintain my health, my HD activism grew into a full, second career parallel to my professional work, and complicating my life as a husband and father.

Two views, two necessities

“Keep striving,” a close friend wrote recently after reading one of the articles in this blog, which, for seven years, has served as a chronicle of both my advocacy and strategies for avoiding HD and, in and of itself, has provided an escape valve for my frequent anxiety about the onset of symptoms (click here to read more).

I am living a very complex paradox. I must strive, but as I do, I also must avoid allowing my activism to exhaust me physically and emotionally.

As I wrote last year, I walk an HD tightrope that requires me to very judiciously balance all aspects of my life. One slip, and I could fall off the wire and plunge to disaster.

The past year has proved exhilarating but also psychologically trying, beginning with a major coming-out speech before world-renowned HD scientists last February and ending with wrenching articles about HD and suicide, abortion, and the deaths of two girls from juvenile HD.

“You need to chill more,” another close friend of 32 years has counseled me repeatedly throughout my journey with HD.

He recommends that I “chill” as an antidote to the striving. He recommends spending less time on work, writing, and the HD movement and more on the simple, relaxing things that I could enjoy: good food and wine, books, movies, conversation with friends, walks with the dog – or just plain doing nothing.

To strive or to chill? That’s the question I face each day.

The rhythm of life

In a memorable sermon during my college years, the pastor of St. Thomas More Chapel at Yale, Father Richard Russell, spoke of the need to “get into the rhythm of life.”

As an HD activist, I especially feel that need. When I achieve that rhythm, my existence feels like the alternating phases of the heart’s cycle – pumping and relaxing over and over again.

Over the past day, that’s exactly how I’ve approached HD and the rest of my life.

This past Saturday afternoon, my wife, our 11-year-old daughter, and I took an hour-long walk in the San Diego beach community of Pacific Beach. Couples and families like us strolled, while more adventurous people on bikes or roller skates weaved in and out. The 70-degree sun bathed us all. We dined on Greek fare at our favorite restaurant, followed by frozen yogurt.

Late at night I worked on this article. This weekend, I had consciously chosen not to write on a difficult topic. I wanted to “chill.”

While I wrote, I couldn’t forget how during the previous night I chatted on Facebook for an hour, trying to help a person recently shocked by the revelation of HD in her large, extended family.

Last night I turned off the computer without finishing the article. I read for a while before turning in.

This morning, I walked door-to-door with my daughter as she sold Girl Scout cookies in the neighborhood.

What a great feeling! Watching her take charge of the sales, I recognized how much more mature and confident she has become.

I forgot not only about HD, but all my other cares.

Now, after lunch, I sit again at the computer, contemplating how I must stay in the rhythm and find the right balance between striving and chilling.

Enjoying the ride

It’s nerve-wracking to wait and wonder when and how the individual symptoms will start, especially because, at 52, I have reached the age at which my mother had already developed symptoms.

I sometimes become impatient about the rate of progress towards treatments and a potential cure.

Sometimes my fear provokes megalomaniacal thoughts about striving against HD, as if I’m a lone knight battling a fire-breathing dragon.

Then I remind myself that I cannot singlehandedly defeat this disease.

We all must get into the rhythm together: patients, asymptomatic gene-positive individuals like me, caregivers, physicians, and researchers.

And we all need to take a break from striving in order to chill.

As one of my California HD Facebook friends likes to say: when matters get rough, “go surfing!”

I don’t surf, but the thought of the power, immensity, and majesty of the ocean brings home the point: I control only a very small part of my destiny, and I might as well enjoy my ride on earth.

An HD Thanksgiving toast

Thanksgiving is my favorite holiday.

Just when the year threatens to become frenetic, Thanksgiving intervenes with a hearty feast and family warmth.

When I was about twelve, I wrote a letter to my aunt Claralou praising her for the peaceful and welcoming atmosphere of her annual Thanksgiving celebration. She displayed my letter on her refrigerator door, and it appeared there again year after year as a remembrance of the true spirit of Thanksgiving.

My mother helped her and the other women with the turkey roasting in the oven for what seemed like forever, while my father, my uncle, and the other men drank beer, talked, and tended to us eight cousins stuffed into the house.

Nobody was a smoker, but on Thanksgiving my dad and my uncle would light up cigars and smell up the den where the football classics were playing on TV and I tried to learn how to use a nutcracker. One year they let us try a few puffs. I felt cool and manly.

Thanksgiving put the brakes on schoolwork, and, in college, when I spent the holiday on the East Coast, it saved me from completely exhausting myself.

I also like Thanksgiving because, of all the holidays, it has resisted commercialization the most. Aside from a trip to the supermarket for dinner items, the urge to buy is absent. (Black Friday is definitely not about Thanksgiving, but Christmas.)

Now in her 80s, Aunt Claralou still celebrates Thanksgiving in the same home, but, living in California with my own family, I haven’t had the chance to spend the holiday there.

My parents are gone – my mother the victim of Huntington’s disease in 2006 at the age of 68, my father, the “HD warrior,” dead at nearly 82 from a broken heart a little more than two years ago.

Ever since we learned of my mother’s diagnosis the day after Christmas in 1995, Thanksgiving has taken on a more profound meaning. For me, it really is a time to take stock of all the good in my life – even though I have lived in wait and dread of HD after testing positive in 1999.

Despite the enormous worries about our future, my family and I are thriving. My wife continues to work full-time as a teacher. Last weekend she ran her sixth half-marathon since taking up running in early 2010. Our “miracle baby,” who tested negative in the womb, is performing well in sixth grade and preparing to take the private-school entrance exam. And, as I look to my 52nd birthday in less than two months, an age at which HD had already stricken my mother, I have displayed none of the classic symptoms of HD.

Along with my wife and daughter, I have experienced the simplest yet profoundest joys of life (click here to read more). Last Saturday our daughter played her last soccer game of the season. As she played one of her best games, I doubled on the sidelines as the assistant coach and team videographer, and my wife cheered them on and made sure the half-time snacks were ready. Later in the afternoon we attended the year-end party, where I was moved by the girls’ unity and laughter and the realization that we parents were a team just as united in our devotion to our daughters.

I feel a special debt of gratitude to the many people engaged in the fight against HD: the members and administrators of the four organizations combating the disease; the HD people and their families fighting the good fight each day; the physicians and caregivers; and the scientists and pharmaceutical companies on a quest for treatments and a cure.

I am continually moved by the circle of close friends who pray for and support for me in numerous ways – especially Norman Oder, the editor of this blog and my “HD alter ego.”

I also want to thank you, my readers, for sharing with me the harrowing odyssey of living gene-positive for a condition described as “the devil of all diseases.” In posted comments, on Facebook, through e-mail, and even in phone calls, you have expressed your unflagging support for me personally and confidence in our collective fight to defeat HD.

Knowing that you are listening, challenging, and cheering me on provides me with an immense emotional strength, and hearing about your valiant efforts against HD inspires me.

As I share both a ham and turkey with our guests on Thursday, I’ll raise a toast of thanks to you.

Huntington’s disease in the news and entertainment media – Part II: A suicide on TV

I’m not going to die a slow death from Huntington’s. I’m not going the way my mother did…. It’s time, Amelia. I mean, I’ve had great food, great sex, great love in my life, and a great friend. I’m happy, and I’m ready. I need you to help me die.

With those words, 30-year-old Michelle, whose HD symptoms had recently started, asks her doctor to assist her in committing suicide.

Michelle and Amelia are fictional characters in the ABC television network’s evening drama Private Practice, but the scenes in which they act (broadcast on October 27, 2011) represent the stark psychological reality of HD patients, untested at-risk individuals, and gene-positive people like me.

According to a 2005 landmark study of HD and the risk of suicide conducted by the international Huntington’s Study Group (HSG), HD patients commit suicide an estimated seven to 200 times more often than the general population, although the data are complex because of the diverse scientific methodologies employed in the research. “Indeed, our current ability to predict actual suicide is poor,” the study states (click here to read more).

A 2010 article by Dutch medical school professor Raymund Roos reported that after pneumonia, the leading cause of death in HD patients is suicide.

Other studies have demonstrated that suicide risk increases around the time of genetic testing for HD (click here to see one example).

In the Private Practice episode, Michelle goes through with her plan, only to change her mind when an injection applied by Amelia leaves her unable to breathe. After her revival in a hospital emergency room, Michelle makes another attempt, this time alone. Amelia discovers her dead body on top of a bed with an open bottle of pills at her side.

Disturbing thoughts

This was an even more painful depiction of HD in the popular media than, as I described in Part I of this two-part series, the Dear Prudence column recounting the story of a young mom who learned just days after the birth of her son that her mother-in-law had HD. That news signified that the father and the baby were also at risk for HD, putting the dad and possibly the son in the difficult situation of requiring a genetic test. In the article I recalled my own anxiety-ridden process of decision-making, which led to my positive test for HD in June 1999 and, six months later, my daughter’s negative test in the womb.

Thinking about the Private Practice episode stirs up disturbing recollections of my suicidal thoughts in the years before and after my genetic test, although not at the moment of the test itself.

My mother had been diagnosed with HD in 1995. Distressed, I watched her revert to a childlike state. I remember vividly how, during one of her visits at our San Diego condo, she ate with her hands. She was also rapidly losing the ability to speak.

“I don’t want to be a gimp,” I remember angrily telling myself, fearing that I might have the HD gene and would become severely disabled.

A farewell ceremony

As a Catholic, I had grown up with the belief that suicide was a sin. As an adult, I still considered it wrong as well as a terrible waste of a human life, no matter what the condition of the person. Life was a gift from God, and only God could take it away.

But HD so relentlessly destroyed my mother’s humanity that I began to think differently about suicide.

On several occasions I declared to my wife that I would rather end my life than face HD symptoms.

I especially feared losing my ability to pursue my greatest passions, reading and writing.

I created a film in my mind in which I invited my closest friends and my wife to a farewell ceremony after which I would, like Socrates, drink a cup of poison.

With a mixture of fear and bravado, I even told my wife about this plan.

Whenever we spoke about HD, she would offer words of hope. However, she kept silent on the topic of suicide. I could tell by the look in her eyes that these declarations scared her.

A devastating option

On the day I received my HD test results in 1999, my wife and I entered a state of emotional shock. As I pulled my new Corolla out of the clinic parking garage, I became distracted and scraped the right fender against a column.

But I did not think of suicide.

I was angry – but also filled with a resolve to fight back. Testing positive for HD changed my life forever. It cast upon me a pall of fear and anxiety, but it also energized me to live life to the fullest.

In the next few years, thoughts of suicide lingered for a while but eventually left my conscious self.

The birth of our HD-negative “miracle baby” in June 2000 – just a few weeks after the first anniversary of my positive test – transformed my thinking about HD and suicide.

First of all, I was so overjoyed at her arrival, and then so busy helping care for her, that I had much less time for dwelling on HD.

Secondly, my fatherly instinct kicked in. With a family to love and support, and who unconditionally lent me their love and support, I began to see the absurdity of committing suicide – at least while I was still free of symptoms.

As I wrote a few years later, “Suicide would spare my family an exhausting, financially ruinous burden. I would not suffer like the HD patients I recently saw at a nursing home, writhing uncontrollably, wearing diapers, belted in a special chair or confined to a padded room. But a suicide would devastate my daughter.”

Dredging up difficult feelings

So I buried thoughts of killing myself. I also channeled much of my anxiety into an increasing level of advocacy work for the Huntington’s Disease Society of America.

After my mother died in February 2006, I became paralyzed by the fear of onset. For nearly nine months, I did not write in this blog.

Yet I had no fantasies of suicide during that long and dark night, although I most certainly thought about death every day.

Since then, I have gained psychological stability and worked hard to avoid symptoms. Surely luck plays a part in the fact that I am approaching my mother’s age of clear onset without any classical signs of HD.

But watching and then reflecting on the Private Practice episode dredged up the difficult recollections I am sharing with you here.

Analyzing Private Practice

I tracked a debate among some members of the HD Facebook community about the pros and cons of the episode, especially regarding whether it accurately portrays the reality of HD people. A number criticized the program for focusing on suicide, while others welcomed the exposure HD received.

Private Practice is actually just the latest in a line of TV productions about HD stretching back to the 1960s. For a detailed explanation of that history, you can click here to watch a video of the keynote speaker at the 2009 HD research conference sponsored by the CHDI Foundation, Inc., the so-called “cure HD initiative,” backed by wealthy, anonymous donors.

The Private Practice episode uses HD as a vehicle to demonstrate the dilemma experienced by physician Amelia in her decision to assist Michelle with suicide.

To the extent that it portrays HD and suicide, I believe the episode is fairly accurate. I very much identified with Michelle’s fears of turning out like her mother. Like her, I frequently thought of planning a suicide for a moment in my life when I could still properly say good-bye.

Suicide as preoccupation

Cleary, as the HSG and Roos articles point out, thoughts of suicide preoccupy many HD people in the at-risk, gene-positive, and affected categories.

Based on a study of “suicidal ideation” in 4,171 individuals in the HSG database, the HSG study determined several critical periods for suicide in HD: the time leading up to diagnosis, onset and the start of early “soft” symptoms (when people can still actually plan a suicide), and the period in which patients lose the ability to perform such tasks as driving and become dependent on others for daily living.

In contrast with popular belief, the HSG report emphasizes that getting diagnosed actually reduces suicidal thoughts: “Receiving a diagnosis of a devastating fatal disease does not exacerbate, and may even alleviate, the risk of suicide.”

Dramatizing HD

We need to keep in mind that Private Practice is entertainment – not a documentary.

Clearly the creators of the program compressed Michelle’s experience into an extremely short period of time in order to dramatize the symptoms of HD.

All humans have a huntingtin gene with a series of components known as CAG repeats. Healthy people have ten to 29 repeats. Forty or more repeats signify that a person will develop HD. In general, the higher the repeats, the younger the onset.

My mother had 40 repeats, and so do I. Evidence demonstrates that this level of defect will lead a person to develop the disease roughly between his or her late forties and mid-fifties.

Michelle has 43 repeats and already has strong symptoms at age 30 – possible but unlikely.

She occasionally displays dance-like movements in her arms, a sign of the classic symptom of HD known as chorea. Amelia describes her as having “tremors, rigidity, seizures.”

Symptoms, but no hope

In debating assisted suicide with fellow physicians, Amelia points out that Michelle’s prognosis is not good. “What if you were seizing and drooling and losing control of your muscles, of your bowels, of your mind?” she says. “Would you want to stick around for that?”

Another doctor counters that Michelle is still “lucid” and “functional” and can get assistance from a support group and other HD services.

These symptoms appear to be accurate, at least in the long haul of an HD person’s existence.

However, as I observed about the Dear Prudence column, the Private Practice episode also fails to note the immense gains in research that would certainly give someone like Michelle reason to hope for a treatment or even a cure in her lifetime.

Ending a life

On the day of the incident, Michelle lies on a couch as Amelia prepares to administer the medications that will halt her life. Amelia explains that after Michelle dies, she will call the police. She warns Michelle she might end up in an irreversible coma.

“I don’t want to get you in trouble,” Michelle says with worry in her voice.

“I don’t want you to suffer,” Amelia responds sorrowfully but with determination to help her friend.

After the aborted first attempt with Amelia’s help, Michelle expresses doubt about her decision to die. She displays an apparently renewed desire to live, and even a bit of humor in a conversation with Amelia.

However, apparently still despondent about her situation, she ends her life.

Testing and planning for the future

The program and especially the research articles about HD can serve as an important starting point for the HD community to discuss openly one of the most difficult of issues: suicide. As the program illustrates, for an HD person and his or her physician, assisted suicide involves questions of health but also of moral values.

As I pointed out in the article on Dear Prudence, gene-positive individuals can contribute immensely to the quest for treatments and a cure.

After testing, I became “Gene Veritas,” the truth in my genes. If you are an at-risk individual, you can discover your own truth – and plan for it accordingly.

I believe that in my personal case, I would have had more suicidal thoughts had I not been tested.

Obviously, a decision to test is a highly personal one. But, with the increased understanding of HD resulting from research, it’s time for our community to see it in a new light.

Feeling mortal

At the same time, I admit that I deeply fear the moment of onset. I realize – from reading the HSG study but also in consulting my heart – that the fear of becoming a “gimp” could potentially lead me to act like Michelle.

We all deny death on a daily basis. Without that denial, we couldn’t function as individuals and as a civilization.

After my mother’s diagnosis, I was forced to confront the idea of a horrible, early death. I have learned to become especially skillful in my use of denial.

But how will I perceive my life when the inevitable onset begins? I dread that moment.

Watching Private Practice and writing about it have once again left me feeling painfully insecure – and mortal.