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.
