At Risk for Huntington's Disease

My name is Gene Veritas, which is a pseudonym I use to write about Huntington's disease on this weblog. I tested positive for HD in 1999, and my mother died of the disease in 2006. My passion in life is to stop HD and other neurological diseases from devastating individuals and their families. Your comments are welcome. You can post them at the end of the blog entries, or you can e-mail me by clicking here.


Charting new territory: going public about HD
Monday, June 14, 2010
I'll learn as I go.
Comments (0) | Tags: gene-positive, Huntington's, disease, diagnosis, mother, wife, daughter, at-risk, Brazil, God, going public, closet, going public, MRI, Isis Pharmaceuticals, oligonucleotide, Associação Brasil Huntington, Teilhard, coming out, discrimination

'Dad, could you get HD?'
Wednesday, May 26, 2010
I revealed my gene-positive status to my daughter.
Comments (0) | Tags: daughter, gene-positive, Huntington's, disease, Terry Leach, juvenile Huntington's, tested, test, mother, wife, HDSA-San Diego, Shoot to Cure HD, Chargers, Huntington's Disease Drug Works, came out, testing, at-risk, come out, creatine, supplement, truth, symptoms

A perfect day: the sunset of a meaningful life
Thursday, May 20, 2010
Even while facing HD, Steve and Gayle enjoyed every minute together.
Comments (0) | Tags: Huntington's, disease, death, gene-positive, premanifest, brain, caregiver, love, juvenile Huntington's, mother, father, son, daughter, warrior, feeding tube, San Diego, Chargers, wife, support, support group, HDSA-San Diego, HDDW, LaVonne Goodman, at-risk, exercise, symptoms, death

The point of no return
Saturday, April 17, 2010
How do you leave the closet about a disease that will deeply alter people's perceptions of your abilities?
Comments (2) | Tags: Huntington's disease, gene-positive, closet, mother, symptoms, discrimination, daughter, wife, Yale, test, coming out, Giamatti, cure, activism, tested negative, testing, genetic testing, genetic, HDSA-San Diego, advocacy, psychotherapist, freedom, Edgemoor, wheelchair, at-risk, at risk, Race Across America, H.R. 678

Good-bye, pre-existing conditions!
Friday, March 26, 2010
The new health care law will finally guarantee us coverage and care.
Comments (4) | Tags: pre-existing condition, Huntington's, HDSA-San Diego, symptoms, Obama, gene-positive, tested positive, insurance, at risk, at-risk, mother, tetrabenazine, discrimination, personalized medicine, testing, psychotherapist, stress, coming out, family, families

Pondering an exit from the HD closet
Thursday, August 20, 2009
"I felt emotionally paralyzed."
Comments (0) | Tags: Huntington's disease, AIDS, cancer, gene-positive, closet, experiment, mother, denial, wife, daughter, blog, privacy, coming out, going public, HD, sympathy, death, ritual, anonymity, orphan disease, discrimination, genetic testing, CHDI, Clinton, Genome, Guthrie, House, at-risk, symptoms

A new attitude about Huntington's disease
Thursday, July 23, 2009
If we won't help ourselves, why should anybody else care?
Comments (3) | Tags: Huntington's disease, symptoms, genetic defect, mother, brain, cells, Robi Blumenstein, CHDI, drug, gene-positive, denial, HD, activism, activist, treatment, drug pipeline, families, drug discovery, anonymous, MRI, smell, motor skills, time bomb, family, at-risk, testing, test, attitude, neurologist, clinic, HDSA, Center of Excellence, trial, Jim Calhoun, Lessons from the Ancients, fundraising, advocacy, House Bill 678, Huntington's Disease Advocacy Center

Great reasons to be a guinea pig
Wednesday, July 15, 2009
Everybody can help with vital Huntington's research.
Comments (1) | Tags: Huntington's disease, Huntington's, genetic, tested positive, brain, symptoms, suicie, activist, HDSA-San Diego, HDSA, experiments, clinical trials, scientists, guinea pig, gene-positive, at-risk, affected, drugs, Martha Nance, LaVonne Goodman, Huntington's Disease Drug Works, HDDW, mother, defect, MRI, National Research Roster, trehalose, coenzyme Q-10, omega, fish oil, blueberry, creatine, neuropsychological, cocktail, motor control, stability, A Beautiful Mind, balance, asymptomatic, treatments, Center of Excellence
Archive
Words Used in Gene’s Blog
Words are scaled by number of uses. Click on a word to trace its use in blog entries.
"can do" spirit    A Beautiful Mind    abortion    accident    accountability    activism    activist    advocacy    advocate    advocates    affected    AIDS    Alice Wexler    Alzheimer's    America    anonymity    anonymous    antisense    anxiety    Apollo    Associação Brasil Huntington    asymptomatic    at risk    at-risk    at-risk status    attitude    awareness    balance    battles    BDNF    belief    Bible    biomarker    biotechnology    blessing    blog    blueberry    Bonnie Hennig    brain    Brazil    brother    Bush    CAG repeats    CalAsia Pharmaceuticals    California    came out    cancer    care    care facility    Care2Cure    caregiver    caregiving    catholic    Catholicism    cells    Center of Excellence    Chargers    CHDI    CHDI Foundation    child    China    chorea    Christ    Christian    Christianity    clinic    clinical trial    clinical trials    Clinton    closet    cocktail    code    coenzyme Q-10    cognitive    cognitive decline    COHORT    collective    come out    coming out    compassion    conscious    consciousness    cope    creatine    cross    cure    cure industry    cycle of life    Darwin    daughter    death    decline    defect    defective    dehydrated    dementia    denial    depressed    depression    DFS    diagnosis    diet    Differential Fragment-Based Screening    disability    discrimination    disease    disorder    donor    drug    drug discovery    drug pipeline    drugs    dysfunction    easter    economic crisis    Edgemoor    Egypt    emotions    energy    escapism    eugenics    evil    evolution    exercise    experiment    experiments    faith    families    family    fantasize    Fastlane    father    FDA    fear    feeding tube    fight    financial crisis    finger-tapping    fish oil    Flash of Genius    football    forsaken    Francis Collins    freedom    fundraising    gene    gene positive    gene-positive    generation    genetic    genetic defect    genetic mirror    genetic test    genetic testing    geneticist    Genome    genomic    Giamatti    God    going public    Good Friday    granddaughter    grandmother    grief    guinea pig    Guthrie    H.R. 678    HD    HD-affected    HDDW    HDSA    HDSA-San Diego    health    health care    health care reform    healthy    Hereditary Disease Foundation    Holy Week    honesty    hope    horror    House    House Bill 678    humanity    huntingtin    huntington's    Huntington's disease    Huntington's Disease Advocacy Center    Huntington's Disease Drug Works    Huntington's warrior    hurricane    hurtling towards death    husband    ignorance    immobility    India    innovation    instinct    insurance    Interstate Highway System    inventors    Isaac Asimov    Isis    Isis Pharmaceuticals    israelite    It's a Bird    Jesuit    Jesus    Jim Calhoun    Jody Corey-Bloom    Johns Hopkins University    juggling    juvenile Huntington's    juvenile Huntington's disease    knowledge    lab    laser-guided missile    LaVonne Goodman    leadership    legacy    lessons    Lessons from the Ancients    Lou Gehrig's    love    marathon    marriage    Marshall Plan    Martha Nance    meaning    memory    metabolic    Michael Hayden    mind    mind coach    mitochondria    modifier gene    mood swings    morale    mortality    mother    motor    motor control    motor skills    MRI    mutation    mysticism    nation    National Institutes of Health    National Research Roster    negative    nervous    neurological    neurologist    neuropsychological    neuroscientists    newsletter    noosphere    nursing home    Obama    oligonucleotide    oligonucleotides    omega    omega-3    onset    orphan    orphan disease    outburst    outsourced    Pacifici    Parkinson's    passover    patient    persevere    personalized medicine    PGD    Ph.D.    pharmaceutical    Phase III    Phebe Hedges    polyglutamine    positive    positive test    pre-existing condition    pregnancy    premanifest    privacy    Promised Land    protein    psychiatric    psychiatrist    psychoanalyst    psychologists    psychology    psychotherapist    psychotherapy    public    Race Across America    ravaged    reflection    rehabilitation facility    relationship    relaxing    religion    religious traditions    research    Resurrection    Rhes    risk    ritual    RNA interference    Robi Blumenstein    San Diego    science    scientist    scientists    Scripps Research Institute    sex    Shoot to Cure HD    side effect    sister    smell    social justice    solidarity    son    soul    Spanish    spirit    spiritual    spirituality    sports    stability    stem cell    stem-cell    stem-cell oversight    Steven Seagle    stigma    strength    stress    striatum    stroke    struggle    success    suffering    suicide    suicie    supplement    supplements    support    support group    supporters    swim    swimming    sympathy    symptomatic    symptoms    technology    Teilhard    Terry Leach    test    tested    tested negative    tested positive    testing    testing positive    tetrabenazine    theology    therapeutic    therapist    therapy    Thich Nhat Hanh    time bomb    tinkerers    togetherness    tongue    TRACK-HD    transitions    treatment    treatments    trehalose    trial    trinucleotide    truth    UCSD    UHDRS    unemployment    untested    urgency    Wall-E    warrior    WeAreHD.org    website    wheelchair    wife    workaholic    Yale