Bidding farewell to my ‘mind coach,’ a major ally in in my fight to avoid Huntington’s disease

 

In December, my psychotherapist will retire, ending for me a professional relationship of 24 years that became the most personal of bonds and an emotional bulwark in my fight to delay – and prepare for – the inevitable onset of Huntington’s disease.

 

I had consulted therapists in my twenties and early thirties for non-HD-related matters. However, after my mother’s diagnosis with HD in 1995 and her inexorable physical and mental decline, I spiraled downward into clinical depression and anxiety. I needed more profound, long-term psychological support.

 

I contacted the local psychoanalytic society, which, after an intake interview, put me in touch with a psychoanalyst who best matched my needs and goals. I was fortunate that she proved to be a good fit. I recommend a proactive attitude about therapy, with a willingness to ask questions, and, if necessary, switching to another analyst or therapist.

 

For me, so began a journey of seeking greater personal and social enrichment. HD researchers and physicians have long encouraged a healthy lifestyle, although no one has found evidence to prove its effect. However, as discussed below, scientists are seeking ways to use HD-affected individuals’ sense of meaning and purpose as a possible path to alleviating symptoms.

 

My psychotherapist has certainly helped me build meaning and purpose not just in my fight against HD, but in life in general.

 

As the format of my therapy went from classic psychoanalysis (multiple sessions per week lying on a couch) to a face-to-face encounter on a weekly, bi-weekly, and then monthly basis, I have referred to my therapist in different ways.

 

“My therapist is like a personal trainer,” I wrote in 2009. “She’s my mind coach. She helps me keep my mind working at its best to meet the challenges of living at risk for HD, just as a personal trainer or coach helps a professional athlete keep his body in top shape.”

 

Gene Veritas, aka Kenneth P. Serbin (photo by Yi Sun, Ph.D.)

 

Psychoanalysis: unleashing personal growth

 

Founded by the Viennese doctor Sigmund Freud in the early 1900s, psychoanalysis became the basis for modern talk therapies, in which the patient shares inner thoughts with the analyst, or therapist.

 

Although in the United States in the latter 20th century psychoanalysis was reduced to a small branch of the burgeoning psychological profession, it remained important in parts of Latin America, including Brazil, my second home. I researched the history of the Roman Catholic Church in Brazil for my Ph.D. dissertation, published as Needs of the Heart in 2006.

 

From the 1960s to 1980s, the Brazilian Church became the world’s most progressive. In Needs of the Heart, I wrote that in this period Brazil helped give birth to the important and controversial

liberation theology, “but also to liberation psychology, whose implications for the Church were even more revolutionary than the new theology.”

 

“Liberation psychology had a dual significance,” I asserted, referring to psychology in the broad sense, including psychoanalysis and many other approaches. “It could free people not only from poverty of spirit and mind but also from the repressive structures of Catholicism.” Liberation psychology sought to release people from such beliefs as the need to repress sexuality and unquestioningly accept religious authority. This history resonated deeply with my Catholic upbringing.

 

Igor Caruso, a Viennese Russian Orthodox analyst and an inspiration for Brazil’s pioneers of liberation psychology, viewed psychoanalysis as ultimately an encounter of love “between two unique and equally valuable personalities.” As I wrote, he believed that without love, there was no cure.

 

One leading priest-analyst in Brazil described psychoanalysis as a “special grace received from God” because of the profound self-discovery and personal growth it unleashed in people.

 

Although psychoanalysis in the U.S. fell behind other areas of psychology and medicine in terms of scientific innovation, it has, with the rise of neuroscience and molecular biology, experienced a renaissance. Using brain imaging, researchers have been exploring how different types of psychotherapy, including psychoanalysis, affect brain structure. (For details, see Nobel Prize laureate and brain scientist Dr. Eric Kandel’s In Search of Memory.)

 

Also, as I experienced, psychoanalysis could be aided with psychiatric medications.

 

About a year after learning about my mother’s HD diagnosis, during a year-long research stay in Brazil, I did therapy with a local analyst for several months. She urged me to continue analysis in the U.S. after my return in mid-1997.

 

Sharing the trials and triumphs of the HD cause

 

I, too, became liberated by psychoanalysis. As is often the case, the process took years.

 

In December 1997, I met my analyst for the first time. After a few preliminary weekly conversations, I lay on my therapist’s couch four times weekly, for 45 minutes, over about five years.

 

I always paid out-of-pocket: my insurance did not cover psychoanalysis. Fortunately, the psychoanalytic society sought to help people of all income levels. In retrospect, paying privately gave me a greater sense of security about confidentiality, because (in one of those terrible ironies of the U.S. health system!) I was deliberately keeping my HD status from my health plan, for fear of discrimination and losing my health coverage, until fully going public in 2012 (click here to read more).

 

As we talked, my analyst took copious notes on my thoughts and asked questions. I spoke mainly about my fears, feelings, and past, especially with regard to my relationship to my family, in particular my mother, who was slowly dying of Huntington’s.

 

My therapist listened intently and compassionately to my many struggles with HD and, more than anyone else, came to know how my fear of the disease – along with other factors – hindered clear thinking and the ability to enjoy life. She also shared my pride and joy in the many fundraising and awareness-building triumphs I achieved with others for the local chapter of the Huntington’s Disease Society of America (HDSA).

 

My psychotherapist helped me cope with the impact of my positive test for the HD mutation in 1999, my daughter’s negative test in the womb in 2000, and my mother’s death from HD in 2006.

 

Descending into the bedrock

 

By early 2003, we had reached a point in the analysis where I needed – and wanted ­– to descend into what I called the “bedrock,” the deepest, most difficult feelings, fears, and memories, which are the hardest to access and confront. Rooted in childhood and adolescence, they long preceded my family’s struggles with HD. However, I seemed incapable of entering the bedrock. Part of my mind resisted both my therapist, and myself, preventing me from being completely honest with myself and gaining more self-understanding.

 

My therapist gently pushed me to consider psychiatric medication to overcome that resistance.

 

Holding a Ph.D., but not an M.D., my therapist could not prescribe medicines, leading me to work with psychiatrists at my health plan.

 

That process proved difficult and frustrating; rather than specify my true concerns to these doctors, who knew nothing of my HD status, I had to speak in generalities.

 

Finding a winning combination

 

In addition, finding the right medication and the right dosage required years of trial and error. My first attempt, with Zoloft (sertraline), nearly proved disastrous: while driving my wife and daughter, I blanked out and ran the car onto the curb. Luckily, no one was injured. I immediately quit the medication.

 

Next, Prozac (fluoxetine) left me disoriented and extremely drowsy, so I was switched to Zyprexa (olanzapine). My mother was also taking this drug for her HD symptoms as an alternative to Haldol. Haldol was one of the standard prescriptions for HD but, we heard from the HD community, not recommended in many cases.

 

With worsening clinical depression and especially anxiety after my mother’s death in 2006, and working with a highly sympathetic psychiatrist (but who still did not know my risk for HD), I found a winning combination of escitalopram and risperidone for the respective conditions.

 

Since the late 1990s, I had also taken trazodone for sleep but quit in 2016 because I had improved on that front considerably. I have also wanted to avoid overloading my system with medications.

 

In contrast with Zoloft and Prozac, escitalopram and risperidone apparently did not cause any unpleasant side effects, although, according to my doctors, I have taken these last two drugs at very low doses. A general caution I heard from doctors: certain antidepressants can negatively impact sexual function.

 

Taking these medications was a huge step, because growing up I learned that psychological counseling and especially anything psychiatric were taboo and seen as shameful by many in my extended family.

 

Fear of HD diminished dramatically

 

In my late 40s, this successful treatment of escitalopram and risperidone relieved me of depression and greatly reduced my anxiety. In tandem with my therapy, these drugs finally helped me psychologically to feel as well as I ever had in my adult life. I have now taken them at the same dosage for more than a decade, and will do so for the foreseeable future.

 

Entering the bedrock, I continued to gain new insights with my therapist. The fear of unconditionally trusting her disappeared. I was able to comprehend my psyche. I became more perceptive and more self-aware – and also more accepting of others and more loving towards my family.

 

My fear of HD diminished dramatically – even though I knew that each day brought me closer to the likely onset.

 

I have the normal ups and downs we all have, but the medications continue to help keep me stable.

 

The benefits of stability

 

In 2011, my therapist helped me prepare for, and then marveled at, a major achievement in my HD advocacy, the first major step outside the “terrible and lonely HD closet”: my keynote speech at the Sixth Annual HD Therapeutics Conference, sponsored by CHDI Foundation, Inc., the nonprofit virtual biotech firm that is the largest private funder of efforts to develop treatments.

 

My therapist provided support for another milestone, and the beginning of the fully public phase of my advocacy: the publication of my article “Racing Against the Genetic Clock” in The Chronicle of Higher Education in 2012.

 

Psychological stability enabled me to work ever more effectively as an advocate and to concentrate on activities such as exercise that have bolstered my health. By then, I had also come off the couch, and our meetings became less frequent.

 

My therapist also became a regular reader of this blog. In some sessions, we have discussed concerns I have expressed in articles. On other occasions, therapy has helped suggest blog topics.

 

My therapist has been a true friend and partner in the fight against HD!

 

A broad strategy for avoiding symptoms

 

In recent years, as I have proceeded into my sixties, I have reflected on how I have so far avoided HD symptoms. On September 17, during my annual neurological checkup, the doctor found no signs of HD. My mother became symptomatic in her late forties and died at age 68. (Click here to read more.)

 

Psychotherapy forms part of a broad range of interrelated strategies for keeping healthy, including physical and mental exercise, blogging on HD, and taking supplements, some of which were ultimately proved ineffective. I also eat a healthy diet, and I meditate and practice spirituality. I have the benefit of a stable, solid-paying job and a close relationship with my wife and daughter.

 

As psychotherapy has helped enrich my life, it has also given me a greater overall sense of meaning and purpose.

 

Researchers are carefully studying these factors as a way to alleviate symptoms.

 

Meaning and purpose are key

 

In July, a team of twelve researchers published “Meaning and purpose in Huntington’s disease: a longitudinal study of its impact on quality of life,” in Annals of Clinical and Translational Neurology, a journal of the American Neurological Association.

 

The researchers studied 322 HD-affected individuals: 50 just starting to experience symptoms, 171 with early-stage disease, and 101 with late-stage disease. The participants did both an in-person assessment and an online survey. Data were collected between 2012 and 2016.

 

The results of the study demonstrated that “higher” meaning and purpose were “positively associated” with “positive affect [mood] and well-being,” the researchers stated.

 

Meaning and purpose also were associated with “decreased depression, anxiety, anger, emotional/behavioral disruptions, and cognitive decline at 12 and 24 months across all disease stages,” they wrote.

 

More research needed

 

The article pointed out the study’s limitations: correlation does not necessarily mean causation.

 

Thus, the researchers recognized the need to verify their findings with “additional instrumentation” to measure the connection between meaning and purpose and the patient-reported data. The study also did not account for possible bias from people on “psychoactive medications.”

 

Nevertheless, the researchers described the study as a “compelling first step” toward understanding the primary mechanism behind meaning and purpose – and how they might improve quality of life in HD-affected individuals.

 

Finding ways to help patients

 

The researchers concluded that their findings “parallel” those seen in those affected by cancer and might help point the way to “palliative HD interventions,” approaches that might relieve symptoms without removing the root cause.

 

They also pointed to the value of psychotherapy. They cited articles from studies of cancer patients and other conditions focusing on psychotherapy and other palliative measures such as spirituality.

 

Critically, a sense of meaning and purpose “may serve as a resiliency factor for suicide in people with the HD gene in that it can impact factors associated with suicidal ideation (e.g., depression, anxiety) as well as suicidal behaviors (e.g., impulsivity and anger).”

 

As the article pointed out, and as is well-known in the HD community, “suicide is a leading cause of death.”

 

Nostalgia, and looking ahead

 

As I read the journal article, I recalled my own fantasies about suicide in the first few years after my mother’s diagnosis and as I worried whether I had inherited the mutation.

 

The birth of our daughter in 2000 gave me immense meaning and purpose. I stopped thinking about suicide as a way to escape HD. My fight against HD became not only advocacy for the cure, but a personal quest to maintain stable health so that I could see my daughter grow up.

 

My mind coach has been an invaluable companion in this journey.

 

As we have our final sessions, I will become deeply sad. It feels like a lifelong friend moving to another city, with little chance of a visit.

 

My therapist and I have discussed the pain of separation. As usual, she will be helping me to remain stable and find a good path forward.

 

With nostalgia, we have also discussed the tremendous progress I have made, including the highlights of my HD advocacy.

 

In July, I began meeting occasionally with another therapist, so that I have psychological support beyond my mind coach’s retirement.

 

I am looking forward to discovering another ally in the fight against Huntington’s.

‘We can now fear Huntington’s disease less’: reflections on the 14th Therapeutics Conference

As in past years, covering CHDI’s Foundation’s recent Annual Huntington’s Disease Therapeutics Conference in Palm Springs, CA, produced a whirlwind of emotions about the devastating disorder that took my mother’s life and looms over the lives of tens of thousands of HD patients and presymptomatic gene carriers like me.

Last year, I left the conference during the Thursday night farewell dinner to drive 120 miles to my home in San Diego, arriving after 1 a.m. Wired from strong black tea and that evening’s news that the initial Ionis-Roche clinical trial had reduced the amount of the mutant huntingtin protein in trial participants’ cerebrospinal fluid, I worked until 5 a.m. on an article about the “best news for the Huntington's disease community since the discovery of the gene” in 1993.

This year I planned for a calmer post-conference moment by spending the last night in Palm Springs. That allowed me to enjoy and socialize at the dinner, get a good night’s rest after the long, adrenalin-filled four-day meeting, and drive back to San Diego leisurely the next day. I believe that such self-care is important in avoiding disease onset.

The smoother transition back home has helped me reflect on the progress towards HD treatments and solidarity among affected families, advocates, scientists, and drug companies.

‘Rod Man’ and his family’s fight

This was my eighth Therapeutics Conference since 2010.

This year’s event, the 14th annual conference, opened on February 25 with the unusual and deeply moving keynote address by comedian Rod “Rod Man” Thompson, the winner of season 8 (2014) of NBC’s Last Comic Standing reality TV talent competition. Rod was the first African-American CHDI keynoter.

Raw and humorous, Rod’s presentation contrasted sharply with the serious, more formal speeches of most previous keynoters, including mine in 2011.

Rod described the terrible physical, cognitive, and psychiatric decline that HD has wrought in his 66-year-old mother Shirley, who lives in the small Georgia town of Villa Rica.

“I see depression and sadness about stuff that can be a misunderstanding to most people, and they’ll let it go, but she still holds on to it and harbors it,” Rod said.

Because of Shirley’s involuntary movements, the family also keeps kitchen utensils away from her to prevent her from injuring herself or others.

“Now it’s better for her to eat with her hands, because she’s a little shaky,” Rod explained. “Her body’s not the same.”

I cried as I remembered my own mother’s depression and inability to care for herself. She died at age 68 after a two-decade struggle with HD.

Untested, Rod and his two daughters – a college graduate and a high school student – are also at risk.

Rod received a standing ovation.

“What a presentation,” CHDI Chief Scientific Officer Robert Pacifici, Ph.D., observed in his closing remarks on February 28. “It was heartfelt. It was pretty amazing to see, in his own quirky way, how he touched on so many of the things that are so important to families, how important our work is, how difficult it is for the caregivers, how much they’re counting on us to deliver something, how complicated the science is for people who are trying to struggle through with what it means in their lives, the information that needs to get to places, the difficulty of visiting the clinics, and the challenges of participating in some of the clinical trials.”

A future article will feature Rod’s speech.

Huntington's Disease Society of America CEO Louise Vetter with 2019 CHDI keynote speaker Rod "Rod Man" Thompson (photo by Gene Veritas)

Collaboration toward a common goal

I felt especially in sync this year with the scientists and fellow advocates. In our ultra-competitive society, facing HD has helped teach me the value of collaboration. At the conference, we all focused intensely on the common goal of developing treatments.

The HD community is known for the close cooperation between scientists and affected families. As one neurologist wrote me last year, when the scientific and medical leaders of the cause “get together, they by and large have tended to check their egos at the door and just try to do what needs to be done.”

At the conference, I paid special attention to the February 28 talk by Marcy MacDonald, Ph.D., a pioneer in HD research and a member of the team that discovered the huntingtin gene in 1993. Dr. MacDonald presented the latest data on so-called modifier genes, which can affect disease onset by decades.

In the past, I’ve only ever been able to just say hello to Dr. MacDonald. However, during a free moment after her talk, I told of the research’s importance for my own life: it may explain why, with the same level of defect in my HD gene as my mother, I have gone a decade without symptoms beyond her apparent age of onset.

I told Dr. MacDonald that the discovery of modifier genes – and the more precise prediction of onset – might open up a new round of genetic testing for the HD community, although I added that I wasn’t sure I wanted to go through the difficult experience of testing again.

Later, at the farewell dinner, I hugged and thanked Dr. MacDonald for her work, which, as Dr. Pacifici noted, could lead to drugs mimicking the actions of the modifier genes. (Also click here to read more.)

Making a difference

I also interacted with a dozen advocates and family members. We discussed numerous HD-related matters.

For an upcoming article, I interviewed Scott Schobel, M.D., M.S., Roche’s clinical science leader of product development and leader of its HD scientific team, for an update on the company’s historic Phase 3 clinical trial to test the Ionis-Roche gene-silencing drug, which, if successful, could slow, halt, and perhaps even reverse HD symptoms. In the words of Roche personnel, they politely “turned the tables on me” by interviewing me on video about my advocacy and family’s struggle against HD for a forthcoming awareness-building campaign.

Together, I feel we are making a difference in the fight against Huntington’s disease!

The nonprofit CHDI is assisting immensely by providing funding, tools, guidance, and open-source data.

Above, HD advocates Jeff and Debbie Mulligan (seated) with (from left to right, standing) Frances Saldaña, HDSA CEO Louise Vetter and Gene Veritas (aka Kenneth P. Serbin) (photo by David Saldaña). Below, Janet Rafferty (in pink blouse), Roche's international communications leader for neuroscience and rare diseases, interviews Gene Veritas (photo by Charlotte Peterson, Edelman agency).

CHDI’s ‘Oscars’ ceremony

As he does each year, HD global advocate and former NBC News foreign correspondent Charles Sabine – also a presymptomatic gene carrier – added his own dose of humor with his mini-version of the conference Oscars, “The Charles’.” Presented on the last evening, they’re a hit with the audience after three days of nonstop scientific panels.

A notable, quite appropriate honor resulted from the incorrect medical instructions given to keynoter Rod and his family prohibiting his mother from consuming pork, one of her favorite dishes. Thus, Charles stated, the “medical intervention of the conference award” went to man “who told our keynote speaker, Rod Man, that his mom can eat as much pork as she likes.”

The awardee was long-time HD specialist Mark Guttman, a neurologist at the Centre for Movement Disorders in Toronto, ON. (Click here to watch the awards program.)

A certain path ahead

Minutes later, on a more serious note during his closing remarks, Charles displayed the same eloquence exhibited during his introductory statement at the HD community’ historic meeting with Pope Francis at the Vatican in 2017.

In Palm Springs, Charles noted that, thanks to the advances of the scientists, the future path for patients and gene carriers is “no longer unremittingly downward.” This absolutely marks the existence of hope, he added. 

To illustrate his point, Charles recounted his first experience at a recent Huntington’s Disease Youth Organization (known simply as HDYO) summer camp in the United Kingdom, with 65 young people.

“It was the hardest HD event of my life,” Charles said. He recalled how one distraught teen asked him: “Tell me something that you know for certain.”

In his ten years of travels around the world to meet with HD families, Charles had never heard a question so difficult to answer.

“A platitude wouldn’t suffice, nor a statement of which I was not one hundred percent certain,” Charles continued. “After a nod and a big breath, I replied: ‘No generation, yours included, will ever need to fear this disease as much as mine did.’ And the reason that I could say those words with such confidence was the tireless work and commitment of all of you in this room.

“So on behalf of all of those young people around the world, thank you.”

(Click here to watch Charles. Click here for my video album of the 14th Therapeutics Conference.)

Charles Sabine at the HD Therapeutics Conference podium (photo by Gene Veritas)

The return of the Huntington’s whirlwind

In my quest to avoid the symptoms of Huntington’s disease and aid the search for treatments and a cure, I frequently struggle to cope with powerful feelings.

As I’ve written before, I constantly aim to keep a balance in my life between “striving” for the HD cause and “chilling” by enjoying the simple pleasures of life.

However, both the fear of symptoms – I tested positive for the HD gene in 1999 and at 53 have now passed my mother’s age of onset – and the excitement about the real hope for treatments sometimes provoke a whirlwind of emotions.

After a ten-week hiatus from this blog and most of my HD advocacy last summer, I took my advocacy to new heights starting in the fall. Since then, I’ve fought to keep a steady course as I’ve confronted both depressing and exhilarating feelings.

Recently, however, the sensation of being caught in a whirlwind has returned.

People keep dying

The people I meet through my advocacy regularly remind me of the terrible suffering inflicted by HD.

To be an HD advocate requires compassion – but also the ability to absorb great pain.

In preparing my recent article on HD and adoption, I interviewed two of my “HD sisters,” women in their mid-40s with about the same degree of genetic mutation as mine. I was startled to hear them describe how the onset of cognitive impairment has severely restricted their lives. I could not help but wonder how my own life as a college professor, HD advocate, husband, and father will be affected when my own inevitable symptoms start.

For my article on two HD activists, I delved into the wrenching story of Karli Mukka, a 13-year-old who died of juvenile HD. To see children who should be flourishing cruelly cut down by HD sends a spike into my heart.

“Oh, not another one!” I exclaim to myself when I read on Facebook about the death of yet another juvenile HD victim.

Seeing these fighters in our community go down makes me vow to redouble my efforts.

Such sadness seems unending. People keep dying of this horrible disease – with no treatments whatsoever to help them.

On February 13, along with the photo below, I posted the following about my own sadness on HD Facebook memorial and prayer pages:

Today marks the 7th anniversary of my mother Carol Serbin's death from HD. My father Paul, her "HD warrior caregiver," died three and a half years later. I miss them both terribly. I tested positive for HD in 1999. Our daughter tested negative in the womb. I had hoped treatments would come in time for my mother, but, sadly, they didn't. I continue as an HD advocate fighting to avoid onset and for the discovery of effective treatments.

A tribute and a Valentine’s gift

Solidarity has soothed the emotional pain.

The loving comments on my parents’ photo from HD friends and acquaintances brought great comfort. Wrote one woman:

Look at the smile on your Mom. I have noticed that no matter how sick these people are, they manage to still smile. My daughter is one of them. Such brave people. Sending Hugs your way Gene, all the way from Canada.

I could not have imagined a more lovely tribute to my mom and dad than the artistic reinterpretation of my parents’ photograph posted on the HD prayer page by Rebecca Rose, who lost an adult daughter to HD in 2009 and a 9-year-old granddaughter in January 2012.

On February 14, Valentine’s Day, I received a wonderful gift from sports talk show host Chick Ludwig, a friend of some 35 years, who interviewed me during a segment about HD on his program on WONE radio in my home state of Ohio.

The joy and excitement of reconnecting with Chick in such a special way and sharing my story with a live radio audience left me overwhelmed.

Looking to the World Congress

Solidarity has also helped recharge my advocacy batteries

In response to the Portuguese version of my definitive coming-out article in the mainstream media, Paulo Vannuchi, a survivor of brutal torture during the Brazilian military dictatorship (1964-1985) and the country’s minister of human rights from 2005-2010, wrote me a long and moving personal e-mail, pledging to support the cause in any way possible.

I was thrilled that a man with great political influence and a record of defending the disabled could help the HD cause in Brazil, my wife’s homeland and my “second home” after nearly three decades of studying its history and people.

The world’s fifth most populous country with nearly 200 million people, Brazil has an estimated 13,000-19,000 HD patients and 65,000-95,000 at risk of carrying the gene, making it a key player in the effort to globalize the search for treatments through the so-called Enroll-HD program.

Indeed, Rio de Janeiro, Brazil’s second largest city, will host the 2013 World Congress on Huntington’s Disease from September 15-18. I will speak in at the congress on the topic of coping with the knowledge of living with the mutant gene.

Paulo and I have begun to brainstorm how to raise the profile of the congress and awareness about the disease in Brazil, where the community is even more closeted than in the U.S. and whose Huntington’s association has only minimal resources. (I will explore the reality of HD in Brazil in a future article.)

After 25 straight years of living in or visiting Brazil, I declined to travel there in 2011 and 2012. I’ll spend a good part of this year planning a very special return: to attend the congress, my first ever HD event outside the U.S., alongside other HD people in the land I love as much as my own. I'm very happy that I'm finally able to meld the professional and personal sides of my life with my advocacy.

However, planning for the trip could also cause anxiety. As a Brazil specialist, I feel an immense responsibility to help make the congress a success.

Managing feelings

As I once again negotiate the twists and turns of the HD whirlwind, I’ve worked extra hard to take care of myself emotionally.

Like a lot of guys, I’m often in denial when it comes to managing feelings.

I wrote in my blog notes:

You men out there: do you take care of your feelings? Do you take care of yourself? Are you always trying to be the hero? The problem-solver? Are you listening to what your spouse says about HD, taking into consideration her feelings?

Luckily, throughout most of my journey with HD I have had the support of a (female) psychotherapist, my “mind coach.” I also take medication for depression and anxiety.

Joining an HD support group just one month after learning of my mother’s diagnosis of HD in late 1995 was one of the most important things I’ve ever done.

Likewise, seeking psychological assistance has helped me deal with the numerous ups and downs of living at risk for Huntington’s disease.

Keeping calm in a whirlwind is not easy. However, with friends, love, and support, we can keep forging ahead.

Huntington's disease and the perils of adoption

Because Huntington’s disease is inherited, its sudden appearance can send family relationships into a state of shock.

Many HD families can trace the disease back over generations, but in some, like mine, it appears unexpectedly.

Adoption of gene-carrying children generates another kind of surprise for both the unknowing adoptive parents and the adoptee.

The story of four HD-stricken daughters born to Dianne M. Travers, who died of HD in 2010, reveals the almost surreal perils of adoption when HD is involved. Their story also highlights how genetic testing, increasingly common in the biotechnological era, can open up unexpected and disturbing doors.

Figuring out a puzzle

The story of these women came to light because one of the sisters, an adopted child who is today the 47-year-old Lisa Davenport Boudreau, in March 2012 discovered the identity of her birth mother after an 18-year search.

An Army combat veteran, Lisa commenced her search at the age of 30 in 1995 after retiring from the service on disability resulting from post-traumatic stress disorder.

Lisa Boudreau during Army days (personal photo)

“It was like a puzzle, putting a little piece together at a time,” Lisa told me in a series of recent interviews from her home in Wilmington, NC. She and her sisters were willing to share their both exhilarating and painful story in an effort to raise consciousness about both the tragedy of HD and the challenges of adoption.

Lisa’s adoptive parents had told her that they raised her in a closed adoption, which withholds the identity of the birth parents. Knowing her parents would be reluctant to help, Lisa at first proceeded on her own, without knowing the name of the agency that had handled her adoption.

Acting like an investigative reporter, she sought her roots by compiling a list of women who’d gotten pregnant around the time of her birth in 1965 in Fargo, ND. She also looked for Fargo babies born that year and poured over census reports and microfiche of area newspapers, hoping somehow to find a scrap of news about her entrance into the world.

In 2007, with her four children from two previous marriages old enough to allow her more free time, Lisa devoted herself to the task full time. She first contracted a private investigative firm specializing in assistance to adoptees. Despite paying a $2,000 fee, she got no results.

Lisa was finally able to obtain from her adoptive mother the name of the agency that had handled her case, Catholic Charities of North Dakota, to which Lisa paid $500 in fees for a document certifying her nationality and birth weight and for the agency to begin a search for her birth mother. This crucial step allowed Lisa to intensify her search.

As Lisa explained, since the 1960s adoption laws have changed to make it easier for adopted children to find their biological parents. “A lot of adoptees want answers,” she said.

However, Catholic Charities delayed in obtaining results, Lisa said.

“I had to have someone put a fire under (their social worker), because in three years they did absolutely nothing,” she explained. “And then, all of a sudden, when I told them I would sue them, in a month they found my mother. I really think Catholic Charities is using the adoption industry to make money.”

Catholic Charities told her Lisa that she had no siblings. To this day, she has still not obtained a copy of her birth certificate, which remains sealed in an archive in Fargo.

An identity – and a disease

“Towards the last year of looking for mom, there was something in my gut,” Lisa recalled. “For the last three months, I didn’t sleep two hours a night. I knew something was wrong. I could feel her pain, even though I never met her.”

Finally, on February 27, 2012, Lisa received a call from a social worker at Catholic Charities who had been able to track down her birth mother.

What came next was not just the joyful revelation of her biological mother’s identity, but also the shocking news that would instantly transform the lives of Lisa, her husband Bob, her children, and the relatives she had yet to discover.

Lisa learned from the social worker that her mother Dianne had recently spent seven years in a nursing home and had died of a disease of which she had never heard: Huntington’s.

“After the call, I got on my laptop,” Lisa remembered. “I pulled it up online and read it to my husband and said, ‘what is this?!’ It was very shocking. Then I had to tell my kids. It was very emotional.”

Searching for roots

In piecing together her and her mother’s past, Lisa would learn that Dianne, a Native American, had gotten pregnant with her at the age of 16. Later in life, Dianne became an alcoholic and a bit of a drifter, spending time in California, Utah, and North Dakota. When HD killed Dianne in November 2010, she was 62.

Dianne Travers (family photo)

“I missed her by one year,” Lisa said regretfully of her quest to meet her mother.

Lisa would also discover the identity of her birth father, Byron Johnson, an artist and architect of Norwegian descent. He had died at the age of 52 in 1993 after falling off a roof in a work accident.

Yet Lisa’s burning desire to know about her mother’s life only grew. She tracked down Dianne’s second husband, 96-year-old Jim Travers, who recalled that his wife had had a daughter. Lisa discovered both a birth certificate and a death certificate for this woman, Sabrina Del Rio, her half-sister, deceased at the age of 31 in 2003.

Querying the nursing home where Dianne had spent her last years, Lisa learned that a California woman named Donna Scott had handled her mother’s funeral arrangements.

Lisa set out to call every Donna Scott in California phone directories. She said she made about 3,000 calls.

“I was searching for someone who knew my mother and might be able to tell me about her,” Lisa explained.

Lisa also wondered if she might have more siblings.

On March 5, 2012, a Donna Scott in Los Angeles received a message from Lisa. Donna phoned her sister Lisa Hein in Alpine, near San Diego, to discuss the mysterious caller who claimed she might be a sister.

Opening up ‘a rattlesnake’s nest’

Despite her suspicions, Lisa B. was no less shocked by what ensued.

Returning the phone call for herself and Donna, Lisa Hein revealed that Dianne Travers was their mother. Both she and Donna were Lisa Boudreau’s half-sisters. Their father was Dianne’s first husband.

“I’m 47, jumping up and down on my bed, when I got the call from Lisa!” Lisa B. said. “My husband looked at me like I was kooky.”

Lisa B. spoke to each sister in separate calls. It did not take long for them to broach the subject of HD. The two California sisters recalled their mother’s struggle with HD. They also explained why their sister Sabrina had died so young: she had juvenile HD.

Sadly, the two sisters also revealed that they, too, were in the early stages of HD.

“How crazy that her name is Lisa!” Lisa H. told me. “We talked for hours that night, till 4 in the morning California time.”

Lisa H., a nurse, spoke enthusiastically about the joy of connection moment but also felt “a giant pit in my stomach” because of the “rattlesnake’s nest” of Huntington’s that she and Donna presented to their sister.

“It was bittersweet,” recalled Donna, who that same day had left her job as an insurance underwriter because of her disability resulting from HD. “We spoke for almost five hours that night. I have the message (from Lisa B.) saved. I will never get rid of it. She said, ‘I think we’re sisters.’

“We found her on adoption sites and Facebook sites. We said, ‘holy cow, she looks like our mother!’ You never know what a person is reaching out for.”

Donna Scott (left), Lisa Boudreau, and Lisa Hein (family photo)

In May, Lisa B. visited her sisters in California. In July, Donna spent two weeks with Lisa B. in North Carolina.

“When we met, it was incredible,” said Lisa B. “We looked at each other and touched each other and poked at each other. Back at the house we took our shoes off and looked at toes and fingers. We all had the same kind of birthmark on our leg. They both were upset at me because I have no wrinkles, and they have more wrinkles than I, and I’m older. They were upset that I had no gray hair, and they did.”

Their mother’s story

Lisa B. was finally learning about the mother and the family she had always wondered about.

Donna, Lisa H., and Sabrina were raised by their father Salvador Del Rio, who divorced Dianne and remarried. Whereas Lisa B. had spent her life up to March 2012 without knowledge of her sisters, Lisa H. and Donna had known since they were children that somewhere they had another sister, beyond Sabrina.

But nobody yet knew that Dianne’s father had died of HD, nor that she, too, was at risk for the disease.

Donna, who spent her summers as a teenager with Dianne and Jim Travers in Utah, talked with her mother about the daughter she put up for adoption. Later, in the late 1980s, when Dianne entered a rehab facility for alcoholics, she wrote a mini-autobiography as part of her therapy.

Reading her mother’s writing, Lisa H. understood that “it destroyed her and broke her heart” to give up Lisa B.

Lisa H. was excited about getting to know her mother better and reconnecting with her lost sister. In the hopes of finding the adoptee, she planned to have Catholic Charities send a letter to Lisa B.

Dianne, too, seemed ready for a new life. Around 1988 or 1989, she finished rehab in Utah. She took a plane to San Diego, with a connection in Las Vegas.

But at the Las Vegas airport, Dianne started to drink. She missed her connection and never made it to California.

Crestfallen, Lisa H. didn’t mail the letter that might have reached Lisa B. She didn’t want her to know that her mother was an alcoholic.

Although Donna had earlier enjoyed spending the summers with her mother, she said that Dianne became “a very mean alcoholic.” In the early 1990s, Donna cut herself off from her mother to protect herself, her son, and her husband.

Dianne was diagnosed with HD in the late 1990s. In Donna’s thinking, the alcoholism could have been both a cause and effect of the HD.

Sabrina’s short life

As Dianne exited her daughters’ lives in the 1990s, and with the family still unaware of HD, Donna and Lisa H. became increasingly worried about their younger sister Sabrina’s health and behavior.

“Looking back now, we see that Sabrina had the symptoms during juvenile years,” Donna said. “She was a dork and klutz in high school. We would call her ‘clumsy.’ She spoke with a slur. But in fact it was the HD. She started acting differently.”

In her 20s, Sabrina frequently forgot to pay her bills, and she neglected to deposit checks. Her car was repossessed for failure to make loan payments.

Lisa H., who has a substantial background in neurological research,  paid special attention to Sabrina’s symptoms.

When Sabrina could no longer function normally, Lisa H. and her husband Andrew tried to discover the cause of her difficulties.

Sabrina Del Rio (family photo)

“She came to visit us one day in San Diego,” said Lisa H. “It was late 1998. She had had ten accidents and totaled like three cars in the two years before that. I would call her house and the line was dead. Sabrina said the was power out in her neighborhood.”

In fact, Sabrina’s phone had been disconnected for failure to pay her bill.

“She was walking staggering in front of us. Andrew said, ‘There’s something so wrong with her.’” Lisa. H said. “I sat there and watched her walk: ‘Oh my gosh, she has a brain tumor!’

“I had just gotten married, and Sabrina got sick six months later,” Lisa H. continued. “She was sleeping on our couch and trying to figure out what was wrong with her. She had severe depression and anxiety. She had trouble at work.”

Sabrina left her job in Los Angeles to move in with the couple. In 1999, Sabrina tested positive for the HD gene. She was in her mid-20s.

“Lisa, nobody’s ever going to marry me like this,” Sabrina told her sister as she cried after receiving her test results. According to Lisa H., it was the only time she shed tears about her condition.

“I looked at my husband and said, ‘I’m going to have to take care of her. She’s my child. I release you. Go and get married,’” Lisa H. said. “And he said, ‘Nope, we’re going to do this together.’”

Within six months Sabrina was in a wheelchair. A year and half later, she became bed-ridden.

“Andrew and I did it 24/7,” Lisa H. recalled. “We staggered ourselves to take care of her.

“She never complained. She always had a smile and was thankful. She handled it all very graciously. A lot of times people get bad tempers and are grumpy. She stayed her sweet self. She was very grateful. She went into the wheelchair, and said, ‘Oh, what a pretty wheelchair.’”

Sabrina died in 2003, just 31.

Struggling with symptoms

Today the three remaining sisters struggle with the early symptoms of HD.

Donna has battled the depression and anxiety caused by HD. Sometimes she goes more than a day without sleep.

“I’m a very, very patient person,” said Donna, who is 46 and whose adult son is at risk for HD. “For that to change in my character, it blows me away. That’s not me. I’m not one to fight.

 “I’m living moment by moment right. I honestly don’t look into the long-term future, because I know it’s not there for me.”

Donna Scott (personal photo)

Like Donna, Lisa H. had to leave her job, where she was “triple- and quadruple-checking” herself to avoid making mistakes.

“I feel like I have a lot of difficulties with memory and organization,” said Lisa H., who is 43 and the mother of two adopted boys, whom she devotedly shuttles back and forth to school and baseball and football practices. “Everything seems like it takes me so long. I can’t even remember my nursing school graduation.

“It’s funny how your desire to have kids is so strong and crazy. Now that they’re here it makes me sadder and makes the disease harder because I wonder what I’ve done to them. We’re so happy but I don’t want them to have to see me like my sister was and spend their lives caring for me. I said to Andrew, ‘We can do this, but I want your focus to be them and not me.’ I was 100 percent fine having me go someplace when it starts to affect the kids.”

A passion for helping others

Lisa B. decided to test for HD. She felt compelled to help her four children map out their lives regarding the disease and family planning. In May 2012, her results came back positive.

“I was getting on the plane to California, with my paperwork,” Lisa B. said. “I didn’t tell my husband the results. The first people I told were my two sisters. I handed them my results after we had lunch. Back home, I told my husband. We cried and cried. I didn’t know about HD, but my sisters watched it happen. If I had found out younger, I wouldn’t have been able to handle it so well.”

Lisa believes she has experienced early symptoms such as depression, but also thinks her perceived behavioral issues could result from the post-traumatic stress disorder and gunshot wound to the head she suffered while in the Army.

“I’ve survived so much with the military,” she commented. “I’m not going to let this bring me down. It’s your attitude.”

Lisa Boudreau (personal photo)

Lisa B. has fought back by becoming an HD advocate. On January 7, she led the very first meeting of the Wilmington-area HD support group that she founded.

Another of her passions is to help reform adoption laws so that adoptees have greater access to information about birth families and are informed of potential health risks.

 “A felon has more rights to their documentation than I have as an adoptee,” Lisa B. observed.

Finding her family has brought her “inner peace,” she added. “It’s a very powerful feeling to finally feel that you’re part of something.”

However, she also recognizes that this knowledge is a two-edged sword.

“I love the family I’ve found, but now I have to carry the burden of knowing about Huntington’s and helping people understand how to handle this information,” Lisa B. explained. “I also did find my 84 year old grandmother who was married to the grandfather who had it, who passed it on to my mom.”

Thus Lisa B. is attempting to track down the many newfound aunts, uncles, cousins, and other relatives who are at risk for inheriting the HD gene.

“My grandfather had 15 more kids, the granddad who died of HD,” Lisa B. continued. “Four of my birth family uncles were incarcerated. I’m in the process of making a list and contacting these people. My aunt tells me, ‘You came back and stirred the pot.’ You have to have a tough skin when you take approaches like this.”

Any day now, Lisa B. expects to receive a package sent by her grandmother containing a painting Byron did of Dianne pregnant.

“Something that both my father and my mother touched would be incredible for me, for someone who never had my mother or saw my mother or touched her,” Lisa B. said. “If someone offered me a million dollars for that picture, I would say no.”

Throughout her quest, Lisa has had to juggle her desires with her relationship with her adoptive mother, Meredith Davenport. (Her adoptive father, Ed Meredith, died in the late 1990s.)

Meredith Davenport (left) and Lisa Boudreau (family photo)

“She wasn’t too on board with me looking,” Lisa B. said. “And I didn’t want to step on her toes. I waited until our relationship was strong enough. I wanted to look, but it affected so many people. It’s very hard mixing all these people together.”

Lisa kept Meredith “in the loop” throughout her search, she said. Meredith became upset when she learned of her daughter’s risk for Huntington’s disease, she added.

Above all, Lisa B. worries about her own children, all in their late teens or early twenties. They now face their own decisions about testing for HD.

“I told them, “You need to have this information,’” Lisa B. said of their newly revealed at-risk status. “‘Knowledge is power. You have the information I didn’t have when I was adopted.’ It’s a very personal decision. They need to make it on their own what they want to do with the knowledge they have.”