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.

A veteran neurologist’s book offers tools for navigating the ‘turbulent world’ of Huntington’s disease

 

In the fight against any disease, affected individuals and health professionals can arm themselves with an invaluable tool: detailed, cutting-edge knowledge about a condition’s medical and social impact.

 

For the Huntington’s disease community and related disorders, Thomas Bird, M.D., has made a key contribution with his book Can You Help Me? Inside the Turbulent World of Huntington Disease, published last year (Oxford University Press).

 

A retired neurologist who has observed more than 1,000 individuals with HD, Dr. Bird has produced one of the most important – and most accessible – introductions to this devastating disorder. Can You Help Me? will remain relevant for years.

 

Dr. Bird is an Emeritus Professor of Neurology and Medical Genetics at the University of Washington in Seattle, WA. His career spanned more than 40 years, including pioneering work in the field of clinical neurogenetics (diagnosing and evaluating hereditary nervous system disorders). His patients included sufferers of Alzheimer’s disease (AD), Parkinson’s disease (PD), and other severe, chronic brain conditions.

 

“I have been […] constantly amazed, puzzled, distressed and impressed by the trials and tribulations of these families coping with it,” Dr. Bird writes of Huntington’s. (As with some in neighboring Canada and elsewhere, he calls it “Huntington disease.”) “Dealing with HD has been so moving, so unsettling and so challenging for me that I felt compelled to write about it.”

 

“Can you help me?” a desperate HD-affected man wrote Dr. Bird from the state penitentiary in 1980 seeking medical assistance. That question reverberated in Dr. Bird’s encounters with many other HD people and their families and caregivers.

 

With non-technical, limpid prose, Dr. Bird tells the full story of HD’s wide-ranging medical, socioeconomic, and legal implications through a series of poignant vignettes, based on hundreds of HD cases. He changed identifying information to preserve patient privacy, and in some cases created composites of two or three different individuals.

 

Can You Help Me? will ring familiar to veterans of the HD cause, but it also offers new revelations and insights about HD’s impact. Also, it provides an excellent primer for families new to HD.

 

 

Key lessons about bioethical challenges

 

Many of the stories in Can You Help Me? center on the bioethical challenges faced by HD families, such as the complex ramifications of genetic testing.

 

Dr. Bird retells the story of a deeply troubled young man from an HD family killed by the police after a life of drug use and many clashes with the law – anti-social behavior perhaps resulting from the disease. The man’s aunt pleaded with Dr. Bird to have the coroner confirm the man’s HD status, because he had a three-year-old daughter for whom the test result would someday hold great relevance. Divorced, the man had lost contact with the mother.

 

“Needless to say, this was uncharted territory for us,” Dr. Bird writes of his clinical team. “The appropriate legal or ethical aspects of this case were not clear to me, but I called the University Hospital genetics lab and explained the situation.” On Dr. Bird’s orders, the lab performed the test.

 

The test demonstrated that the man indeed did have HD – “another burden” for the extended family, as Dr. Bird writes.

 

“To this day, I do not know if we followed the correct strategy in trying to help this family,” he concludes. It seemed like “quick thinking” to ask the coroner to save a sample of the dead man’s blood for HD testing, he observes. But many questions remained, including when and how to tell the girl of her at-risk status, he adds.

 

Dr. Bird believed that he might encounter the family again, when the little girl had grown up.

 

Dr. Thomas Bird (book jacket photo by Chang En Yu)

 

No ‘typical’ patient

 

In an appendix, Dr. Bird provides an overview of the genetics of HD and the genetic testing process. In general, as I noted in a previous article, Dr. Bird’s book has helped move the HD field from a traditional, more limited kind of genetic counseling to broader “genetic education.”

 

Can You Help Me? reflects on many other key issues for the HD community.

 

He offers valuable insight into the challenges faced by health professionals working with HD patients, as exemplified in the story of a patient clinic who shot himself. “Could we have done more?” Dr. Bird asks. “These situations are heavy burdens for everyone to bear.”

 

Dr. Bird’s vignettes underscore another crucial point in line with the latest medical and scientific research into the disease: there is no “typical” HD patient, as symptoms manifest uniquely in each case.

 

Notably, Dr. Bird does not describe HD as being like a combination of other diseases such as AD and PD, a shorthand some in the HD community use. Dr. Bird instead compares HD to these and other conditions, thus adding vital context.

 

Dr. Bird also emphasizes the need to end the false dichotomy between psychiatric “mental” diseases like schizophrenia and “brain” diseases like HD. Both originate in the brain, he points out, and both cause “mental illness.” Psychiatry and neurology should intersect more, he argues.

 

A contribution to the history of HD

 

In researching the book, Dr. Bird did important historical legwork. For instance, he painstakingly tracked down important episodes such as the use of lobotomies as an attempt to treat HD.

 

“It is estimated that 50,000 lobotomies were performed in this country between 1938 and 1955,” Dr. Bird writes. “Since persons with HD were often institutionalized and lobotomies were common, it is likely that many of these operations were performed on patients with HD.”

 

Although the procedures on HD people were “not easy to document,” Dr. Bird finally found evidence by examining medical texts. In all, Dr. Bird estimates that “perhaps more than 100” people with HD had the operation. It is not currently recommended for HD.

 

A ‘Princess in Pink’

 

Although many vignettes are gut-wrenching, Can You Help Me? also highlights the sometimes-brighter side of the HD story, such as individuals with late onset, mild symptoms, and productive lives.

 

That message holds two-fold meaning for me as an asymptomatic 61-year-old HD gene carrier who saw his mother develop the disease in her late 40s and die at 68.

 

First, I remember how fortunate I am to have reached this stage without symptoms.

 

Secondly, as a writer and advocate, it reminds me that, no matter how badly the disease has turned people like my mother into shadows of themselves, we should see them as humans struggling with disabling symptoms.

 

A caring community can seek to alleviate some of that burden.

 

One of my favorite stories from Can You Help Me? spotlights the “Princess in Pink,” Bobbi, a little girl who, although afflicted with juvenile HD, maintained her cheerfulness.

 

Bobbi’s fifth-grade teacher, Miss Perry, “decided to be proactive,” Dr. Bird writes. “She wanted to make Bobbi more comfortable in the classroom and educate her other students about Bobbi’s disease and how to relate to persons with disabilities.”

 

The class created the “Princess Project” to discuss HD and create a booklet ­– with a pink cover and a picture of Bobbi wearing a pink crown – about Bobbi and her condition. The classmates wrote perceptive and compassionate entries and also made drawings of Bobbi.

 

“It was a learning experience for everyone, including the adults,” Dr. Bird recalls.

 

Sadly, by age 15, Bobbi’s conditioned worsened, requiring a feeding tube, a frequent end-of-life measure for HD patients. She died in a hospice setting. Several of her old classmates attended the memorial service, where they fondly remembered Bobbi, Dr. Bird writes.

 

A resounding ‘yes’ in wanting to help

 

Can You Help Me? is one of the best and most important books about HD. It builds on the work of historian Alice Wexler, in particular her book The Woman Who Walked into the Sea, which uncovers many of the prejudices associated with HD (click here to read my review).

 

Dr. Bird has provided us with a deeply rich documentation of life in the HD trenches.

 

The title Can You Help Me? asks a question that I and so many other HD family members have posed when confronted with the frightening prospects of HD. (It also holds great value for people in the AD, PD, and other neurological disease communities.)

 

“Sometimes we can help a great deal, sometimes we can only help a little, and sometimes we just muddle through as best we can, navigating our way between suffering and harm,” Dr. Bird concludes, noting briefly that research towards treatments “heralds better days ahead for the world of HD.”

 

Fortunately, for the HD community, Dr. Bird’s book indicates a resounding “yes” regarding the desire by him and so many other professionals to alleviate the suffering caused by HD.

 

(For an interview of Dr. Bird about the book, click here).

BDNF and ‘Neurobics’: building a ‘beautiful mind’ against Huntington’s

To avoid the onset of Huntington’s disease, whose killer gene I inherited from my mother, I must do all I can to protect my brain.

In 2001, two years after testing positive for HD, I was inspired by the film A Beautiful Mind to try to think my way to cerebral health. In that film, starring Russell Crowe and Ed Harris (two of my favorite actors), the true-life figure of Nobel Prize-winning mathematician John Nash used his intelligence to distinguish the hallucinations of his schizophrenia from reality and to regain a normal life.

In effect, Nash tricked his symptoms.

I didn’t believe that I could trick HD. Like schizophrenia, HD is a brain disorder, but with far more devastating symptoms – and without a treatment for its root causes. Schizophrenia can be controlled with medication. HD cannot. And, whereas the causes of schizophrenia are thought to be a combination of genetic and environmental factors, HD is completely genetic, with 100 percent of gene-positive individuals eventually becoming symptomatic.

Tricking a gene like that seemed impossible.

Working the brain to exhaustion

But I did believe that keeping an active mind, thinking positively, and working for a cure for HD might allow me to delay onset.

My job as a college professor already provided wonderful stimulation for my brain. I read, wrote, traveled, and lectured regularly. Contact with the young, vibrant students kept me feeling young myself.

As a member of the board of directors of the San Diego chapter of the Huntington’s Disease Society of America (HDSA-San Diego), I took on the hugely stimulating, and time-consuming, task of writing, editing, and producing the organization’s tri-annual newsletter. Using skills gained in my former work as a journalist and my current career as a historian, I delved into the harsh reality of HD as well as the growing body of scientific research towards treatments and a cure.

I ran the newsletter until 2007. During that time, I watched my mother rapidly decline and ultimately die of HD in early 2006, and I rode the emotional roller-coaster of wondering and waiting about the onset of my own symptoms.

I had purposely over-stimulated my brain – many times to the point of exhaustion.

A self-fertilizing garden

In the mid-2000s, I began reading about a new discovery about HD and the brain that provided me with another tool to build my “beautiful mind” against onset: I could increase the amount of a crucial substance for brain health known as BDNF (brain derived neurotrophic factor) by exercising.

A nutrient, BDNF acts like fertilizer for the brain. It is produced in the cortex, the convoluted, outer hemispheres of the brain, and transported into the striatum, the inner, lower level of the brain. Thus, in the words of researchers, our brains function like “a self-fertilizing garden.”

The striatum happens to be the area of the brain most affected in Huntington’s disease. Starting in the early 2000s, scientists working with HD mouse models observed that BDNF levels fell dramatically in the striatum. The lower the amount of BDNF in the mouse brains, the earlier and more severe was their HD onset.

“The promising new findings about BDNF can be exploited even today,” wrote Dr. Marsha Miller on the Huntington’s Disease Lighthouse Family website in 2006 (click here to read more). “There are easy, cheap, reasonably safe ways for people to increase BDNF levels in the brain. Exercise, maintaining a reasonably low weight, and enjoying a stimulating, but not overly stressful, social and mental life all raise BDNF levels. Other BDNF enhancers include the antidepressants known as selective serotonin-reuptake inhibitors (SSRIs), such as sertraline, and a few other drugs.”

This was excellent news for all gene-positive and symptomatic HD people. We could actually increase BDNF in our brains and therefore perhaps delay the onset of the disease or slow down the progression of symptoms!

A hot topic

BDNF was a hot topic at the 2011 Sixth Annual HD Therapeutics Conference from February 7-10, 2011, in Palm Springs, California. In addition to keynoting this meeting, I reported on the scientific presentations. The event was sponsored by the CHDI Foundation, Inc., the so-called “cure Huntington’s disease initiative,” a multi-million-dollar program backed by anonymous donors.

In his presentation on brain receptors that link up with BDNF, Dr. Moses Chao of the New York University School of Medicine observed that research shows that the lack of the substance helps cause the neuropsychiatric symptoms of HD (such as depression).

BDNF, he observed, contributes to a number of important activities in the brain, including the development of the cytoskeleton (the skeleton of the cell) and the ability of the synapses to adjust their strength. BDNF also helps cells survive.

As Dr. Chao pointed out, scientists first thought it might be possible to inject BDNF directly into the brain to help patients. However, in their experiments they encountered difficulties in delivering the BDNF, and it proved to be very “sticky,” meaning that it did not move easily in the brain. There were also negative side effects.

More recently, Dr. Chao explained, scientists have sought ways to bypass these problems. That research has focused on the BDNF receptors, molecules in the brain that link to BDNF so that it can carry out its tasks. Scientists are also examining substances that can bind to the receptors and act as a substitute for BDNF.

There may be other ways to raise the amount of BDNF. Dr. Allan Tobin of CHDI, for instance, has conducted a workshop to investigate the use of molecules that could mimic the effect of exercise on the brain and therefore increase BDNF levels.

For further details on the importance of BDNF and the research efforts towards BDNF-based HD treatments, watch the short video below by Dr. Jody Corey-Bloom of the HDSA Center of Excellence for Family Services and Research at the University of California, San Diego.



For additional background on BDNF, visit the Huntington’s Disease Lighthouse Family. Also see the report on the CHDI meeting at HDBuzz.

For the latest in HD stem-cell research and BDNF, watch the video below by Dr. Jan Nolta, Professor in the Department of Cell Biology and Human Anatomy and Director of the Stem-Cell Program at the University of California, Davis.



Thinking about exercise

To increase my own BDNF, I exercise regularly.

In 2009, when my wife and I decided to build a pool in our back yard, I installed a Fastlane swimming device that creates a powerful current against which I swim. Weather and time permitting, I try to swim 30 minutes three to five times per week.

I try to vary my exercise routine at least a bit. A few years ago, I went through a cycling phase. At times I also have used an elliptical machine for cross-training of the arms and legs.

Now I alternate swimming with 30- to 40-minute walks with my dog Lenny, a three-year-old male cockapoo full of love and energy.

I read once that, in order for exercise to provide maximum benefit for the body, the individual must think about the exercise while he or she is performing it.

So, for example, I don’t listen to music when walking. And I stopped using the elliptical while watching television.

While swimming in recent months, I have imagined BDNF bathing my brain. In my mind, as I stroke against the current, I sometimes chant a mantra: B-D-N-F.

As I wrote in my blog notes the other day, for me BDNF signifies “beautifully derived neurotrophic factor.”

Breaking the routine

After my September 21, 2011, entry titled “Waiting for symptoms: How long can I hang on?”, Dr. Chao wrote me an e-mail encouraging me to work on increasing my BDNF levels “through increased exercise or any other kind of novel activity (travel, learning a new language, etc.).”

I asked Dr. Chao to comment on a recent study that had left me puzzled and worried after I read about it during the summer. Investigators at the National Institutes of Health found that a particular kind of transgenic HD mouse, living in a cage where it could use a running wheel, became symptomatic earlier, had more severe impairments, and suffered greater damage to the striatum because of exercise!

Dr. Moses Chao at the 2011 CHDI HD Therapeutics Conference (photo by Gene Veritas)

“The article on the detrimental effects of exercise was carried out with a transgenic HD animal model that has not been well studied,” Dr. Chao responded. “I suspect it develops some pathology early on that might interfere with exercise. One issue about exercise is it helps if there is novelty. Routine activity (‘running wheels’) can be brain-deadening.”

Dr. Chao’s comments drove home two points: I needed to vary my exercise and personal enrichment and to enjoy them fully. I must not view the avoidance of onset as an obligation or chore, but as life-affirming.

Neurobics: a way to increase BDNF

Dr. Chao followed up by mailing me a copy of a book by the late neuroscientist Lawrence C. Katz, Ph.D., and writer Manning Rubin titled Keep Your Brain Alive: 83 Neurobic Exercises to Help Prevent Memory Loss and Increase Mental Fitness.

“Neurobics” combines the words “neuron” and “aerobics.”

Many people are familiar with the standard recommendations for giving the brain a workout: crossword puzzles, logic puzzles, reading, memory exercises, and engaging with interesting people and “other kinds of challenging activities that exercise brain circuits in different ways,” write Katz and Rubin.

They recommend that people continue with such activities.

But they should also practice the very different kind of exercises involved in Neurobics. These simple mental exercises serve as cross-training for the brain.

“Neurobic exercises use the five senses in novel ways to enhance the brain’s natural drive to form associations between different types of information,” write Katz and Rubin. “Associations (putting a name together with a face, or a smell with a food, for example) are the building blocks of memory and how we learn. Deliberately creating new associative patterns is a central part of the Neurobic program.”

And they add a point of the utmost importance for for HD-positive and HD-affected individuals: it’s well-established that Neurobic exercises increase levels of BDNF!

“In short, with Neurobics you can grow your own brain food – without drugs or diet,” Katz and Rubin state. “The more active brain cells are, the more growth-stimulating molecules they produce and the better they respond.”

Trying the exercises

Katz and Rubin begin with the example of a simple but powerful stimulant to the brain: when you arrive home at the end of the day, rather than relying on your sense of sight, close your eyes and use your senses of touch, hearing, and smell to guide you into the house.

Another exercise, which I tried yesterday, is to brush your teeth with the opposite hand. For a right-handed individual like me, this stimulates the less-used right hemisphere of the brain.

When I walked Lenny the other day, I followed the book’s suggestion of taking a different route. I sensed it was more stimulating for him, too.

Lenny and I leaving on one of our frequent walks

“It’s rather astounding when you think about it,” Katz and Rubin observe. “A certain kind of sensory experience can permanently change the wiring in part of your brain!”

They conclude: “Neurobics uses an approach based on how the brain works, not simply on how to work the brain.”

Everybody in the HD community (and everybody else, for that matter) should read Keep Your Brain Alive. It provides a treasure trove of information about how our brains work and how to protect them from disease and aging.

Quality, not just quantity

When I first learned of HD because of my mother’s diagnosis in 1995, doctors and researchers told me there was virtually nothing an at-risk or gene-positive person could do. HD symptoms are inevitable.

Since then, scientists plumbing the depths of the brain and diseases such as HD have turned up evidence to the contrary.

I wrote in my notes the other day: “YES!!! There are things we can DO to help our brains stave off HD!”

Neurobics may not prevent me from becoming symptomatic, but it very possibly could delay onset and, when it occurs, reduce the devastation of my brain.

From my contact with Dr. Chao, I have learned that I must focus not only on the quantity of exercise, but its quality. I need to stop frantically overstimulating my brain and instead concentrate on exercise, Neurobics, and other activities that will increase my BNDF.

As Katz and Rubin point out, that includes maintaining a rewarding emotional life based on intimate connections to people.

Living neurobically

For my survival, nothing could be more important than exercise, cross-training my brain, and strengthening ties to family and friends.

Although the hope of treatments has increased dramatically, chances are that a treatment will not become available before my symptoms start.

Through HDSA and this blog, I’ve fought for the success of the HD movement. Soon the moment may come when I will need to focus just on me and my own brain, living my final days of mental clarity as neurobically as possible.

The diary of a Huntington's disease activist

In my previous blog post, I described my secret, second career as a Huntington’s disease activist.

Today I was off from work because of the Easter holiday, so I decided to catch up on a few of the most pressing tasks on my HD “to do” list.

Recently I’ve received questions from other members of the HD community about how to engage in or improve upon work in the cause. I hope that this blog article – which I am fashioning as a kind of diary entry – will provide some suggestions.

Also, next month is HD Awareness Month – an opportunity for everybody in our community to reflect on our roles in the cause. On May 7, I’ll be speaking on the topic of effective activism at the annual convention of the Northern California Chapter of the Huntington’s Disease Society of America (HDSA).

6-7 a.m.

After having gone to bed early (9:30 p.m.), I arose to prepare scrambled eggs for our “miracle baby,” who tested negative in the womb in January of 2000. She’s taking state achievement tests this week, and my wife and I want her to eat an extra good breakfast to help boost her performance. As my wife got her ready, I checked the first e-mails of the day from the HD Facebook discussion groups to which I belong, and did my morning stretch.

8 a.m.

I returned home after dropping my daughter off at school. With both my wife and daughter off to their activities and the house quiet, I performed my morning deep breathing exercises and mini-meditation.

This morning ritual helps me face yet another day of living at risk for HD while juggling job, family, and other responsibilities.

8:10-9:15 a.m.

I started thinking about tonight’s monthly HD support group meeting. I always come back from support group distraught at seeing people with HD and hearing others tell their sad and difficult stories of living at risk or experiencing the initial symptoms such as problems with driving.

I don’t want to go – but I must. I decided to go back to bed for some extra sleep – and to help my mind work through the fear so that I can function normally the rest of the day.

9:20-10:30 a.m.

I awoke after about an hour of sleep feeling less depressed.

I responded to some work and personal e-mails, and then turned to HD e-mail again. I exchanged several messages with the local special events coordinator for HDSA-San Diego about corporate sponsorship logos for our chapter website, which I oversee. These logos need updating to reflect new 2011 supporters of the cause here in San Diego.

I also made a few phone calls about Senate Bill 648, the Huntington’s Disease Parity Act of 2011. If passed, the law would make it easier for HD-affected individuals to obtain federal benefits.

I found out over the weekend that the sister of a very good friend is a staffer to Rep. Xavier Becerra (D-Los Angeles), a member of the powerful Committee on Ways and Means and the ranking member of the Ways and Means Subcommittee on Social Security. Rep. Becerra did not back the bill last year, when advocates obtained 153 co-sponsors in the House of Representatives. His support is crucial, and we need to get him on board. (Click here for a previous blog article on the bill.)

I recalled HD advocate Allan Rappoport’s sage advice: if you don’t know a representative or senator, ask five friends for help. At least one of them is bound to know an elected official or how to contact one.

10:30-10:45 a.m.

I phoned Jeri, a middle-aged woman who cares for her nephew Tony, who was stricken with HD in his early 20s. I want to write a blog article about care, using Jeri’s selfless dedication to Tony as an example. Completely disabled, Tony now lives at Edgemoor Hospital, a public facility where Jeri visits him each evening to help him eat dinner.

Jeri told me that Edgemoor was in the news because a 50-year-old non-HD patient, who was recovering from a car accident, allegedly bled to death because of hospital neglect (click here to read news coverage).

Later I sent the link about the article to the HDSA-San Diego board and support group facilitators.

Edgemoor personnel have cared for dozens of HD patients over the years, and I fear that I, too, may end up there if my family cannot care for me or afford to find proper assistance. I have visited Edgemoor on several occasions. The facility seems to have improved, but the news of neglect – and a $2 million legal payment from the County of San Diego to the dead man’s family – left me deeply worried about the fate of HD people there.

11 a.m.-noon

I drafted the letter below to Sen. Barbara Boxer (D-CA) about the HD Parity Act.

Dear Senator Boxer:

I urge you to join Senator Kirsten Gillibrand as a co-sponsor of S. 648, the Huntington’s Disease Parity Act of 2011.

One of the cruelest of conditions, Huntington’s disease destroyed my mother’s brain, leaving her unable to walk, talk, or swallow. HD is like a combination of Alzheimer’s and Parkinson’s, with psychiatric problems added to the mix. After more than 15 years battling the disease, my mother died in 2006 at the age of only 68.

I tested positive for HD in 1999. There is no treatment or cure, and I will very likely develop symptoms within a few years. I am 51.

This genetic killer strikes people like me in their prime, saddling our families with a huge caregiving burden and ruining their finances.

Individuals affected by HD qualify for Social Security Disability benefits and Medicare. However, bureaucracy and inaccurate information about the disease make it difficult for HD people to actually secure their benefits. Some are even denied those benefits.

S. 648 would enact two very important changes in the law.

First, it would require the Social Security Administration to update its decades-old, inaccurate disability criteria for HD.

Second, it would waive the two-year waiting period for patients to receive Medicare benefits, thus bringing assistance quicker to families in dire straits.

Passage of the HD Parity Act will bring immediate relief to HD-affected families. I have paid Social Security taxes all of my working life, and my wife and daughter will urgently need federal benefits when I can no longer help support them. Passage of the Act will provide at least some peace of mind for us as we fight as a family to deal with the devastating symptoms of Huntington’s disease.

12:20-1 p.m.

I started writing this entry.

1-1:30 p.m.

I ate lunch (tilapia, brown rice, roasted vegetables, olives, and yogurt) and took my midday dosage of my Huntington’s Disease Drug Works supplements (trehalose, Omega-3 fish oil pills, and Coenzyme Q-10).

1:30-1:55 p.m.

I normally take a “power nap” this time of day, but because I slept extra in the morning and need to work on this post, I skipped it in order to write.

1:55 p.m.

I got ready to pick up my daughter from school. I normally spend part of Monday afternoon at home with her as she reads or does homework, and at around 4 p.m. I drive her to her weekly piano lesson. Today we moved her lesson up to 3:15 so that I can prepare for tonight’s support group meeting. I usually leave around 5:30.

3:45

I read an e-mail noting the “lukewarm response” of California Senators Boxer and Dianne Feinstein to the HD Parity Act. We will have to redouble our efforts to get them behind the bill.

6-7:30 p.m.

I attended the support group meeting. Tonight the HDSA-San Diego board made its annual visit to the group to discuss chapter activities and the goal of national HDSA to strengthen ties to the grass roots, providing greater service for HD families. I was happy about the renewed commitment to care.

I also conversed with several HD people. Once again, I looked into the “genetic mirror” – my own probable future as a gene-positive individual.

Big goals – but little ones, too

As you can see, there’s no secret ingredient or spectacular formula for being a Huntington’s disease activist. Such work requires time, focus, and clear objectives.

It also requires a strong belief in the cause. Without commitment, it’s easy to be discouraged and give up.

I constantly keep in mind our overall goals of raising awareness, providing better care for HD-affected individuals and their families, and finding treatments and a cure.

However, along the way we must tackle the many small, intermediary tasks. When each one of us completes these tasks, together we build a movement – and make a difference.

That’s what today was all about for me.