Older Posts

  • Four non-drug things that can make a big difference for HD

    Although there surely are others, four non-drug "things" that this author believes can make a huge difference for those with HD or at risk of it is the focus of this article.  The "things" include: Exercise for body and brain Knowledge of and early recognition and management of symptoms Healthy...

  • Psychologic Distress/Psychiatric symptoms and Huntington's Disease

    Psychological distress and psychiatric symptoms are terms that we can use to describe a range of situations that occur in Huntington's disease (HD) that are emotionally troubling and have negative impact on how we function as individuals and families. And we certainly have more than our share of...

  • Huntington's Disease Care

    There have been a number of studies about the impact and burden of Huntington's disease (HD) on both those affected and their family carers. Though there are many other factors, the major recurring theme boils down to "lack of care". This includes lack of access to HD subspecialty medical care, lack...

  • Informal (Family) Caregivers for HD

    Care is described as informal when provided by unpaid family members or friends, and formal when caretakers are paid. Though a small subset of individuals with HD are cared for in the home through end of life, formal paid home healthcare services are frequently utilized. However the vast majority...

  • Aggression in Huntington's Disease

    A recent article reports that aggression is common in individuals with Huntington's disease. Authors report rates of aggressive behaviors between 22% (for clinic patients) and 66% (for hospitalized patients) among individuals with HD. What do they mean by aggression, and how should we interpret...

  • Auspex Announces (very) Positive First-HD and ARC-HD Trial Results

    Auspex Pharmaceuticals announced quite positive results for their drug SD-109. This drug treats chorea with many fewer side effects associated with tetrabenazine. And most important it improved quality of life.

  • 2014: A Yin-Yang year for HD

    Particularly during this past year, living with Huntington's disease (HD) has been full of its ups and downs. First there was the hope in ongoing clinical trials of both coenzyme Q-10 and creatine. Then there was sadness and fear that came with their failures. And now hope is springing again for...

  • Bummed

    "Bummed" was what this author felt after the recent announcement of the failed trial of creatine for Huntington's disease (HD). We can put some positive spins on recent trial failures; we have learned how to run large clinical trials, we can learn from negative outcomes, and best of all hundreds of HD...

  • Gastrointestinal Problems in Huntington's disease

    Human study shows that inflammation in the esophagus (swallowing tube) and stomach is common and occurs more frequently in Huntington's disease (HD) as it progresses. Study also shows that individuals often do not complain. Lower GI function has not been investigated in individuals with HD, but if...

  • Pathological Laughter or Crying

    Pathological laughter or crying (shortened to PLC) refers to laughter or crying that is deemed socially inappropriate for the situation. Often the individual will laugh or cry spontaneously for no apparent reason. The abnormal behavior is one of impaired emotional expression. Can this be a symptom...

  • Swallowing difficulty and Huntington's disease

    Dysphagia, or difficulty swallowing, is a big problem in Huntington's disease (HD), but surprisingly little is known about it. It is not known how early it begins, or how symptoms and swallowing dysfunction progress over the stages of HD. Further, even less is known about techniques that might...

  • Auspex SD-809 Interim Analysis Data Release

    A recent press release from Auspex Pharmaceuticals reported on an interim analysis from their ongoing ARC-HD trial that switching from tetrabenazine (Xenazine) to SD-109, resulted in equal control of chorea in Huntington's disease. SD-109 is a chemically modified form of tetrabenazine that allows...

  • PGD for the Prevention of HD

    For more than a decade, couples at risk for Huntington's disease have had the option to conceive an unaffected child by utilizing the reproductive process of preimplantation genetic diagnosis (PGD). If PGD became common practice in HD, it could eliminate the majority of disease for the next...

  • Caregiving: A Risky Profession?

    Caregiving for a person with later stage Huntington's disease is a loving long-term commitment that can bring rewarding fulfillment but sometimes may be hazardous to your health. Though some later studies do not confirm, an early often quoted study suggested that long-term caregivers who report...

  • What is Cysteine? And what does it have to do with Huntington's Disease?

    In a paper published this week in the prestigious journal Nature, Dr. Solomon Snyder and colleagues reported promising results in cell and mouse models of Huntington's disease (HD). They showed that these models were deficient in both (1) cysteine, one of the amino acid building blocks in...

  • Raptor's Clinical Trial for Cysteamine in Huntington's: Cause for Optimism?

    Raptor Pharmaceutical Corp. announced some positive (though preliminary) results from the 18-month review of their CYST-HD Phase 2/3 clinical trial testing a cysteamine drug for Huntington's disease (HD). They reported slower progression of motor impairment in those participants who had received...

  • Antipsychotics for Huntington's Disease: Are they all the same?

    Antipsychotic drugs are frequently prescribed for several symptoms of Huntington's disease (HD). Does it make any difference which one is used? While there is no clinical trial evidence for HD, early clinical trials in schizophrenia suggested that one is not that much better than another. However...

  • Why Bother with First-HD? Because We Need a "Better" Tetrabenazine

    First-HD is a clinical trial testing SD-109 ER, a new extended-release form of tetrabenazine (Xenazine). Finding the 90 participants, who must have moderately severe untreated chorea, has been difficult and slower than expected. Only 4 or 5 participants are needed for each of the 20 centers doing this...

  • If You Helped Just One Other Person

    A short while ago a patient of mine died after a long struggle with Huntington's disease. Here I tell the uplifting story about him and the last four years of his life. This story would not have been the same -- for him or for me -- without Elizabeth, our mutual and...

  • Substance Abuse in Huntington's Disease: How bad is it?

    Over the years there have been a few studies regarding the risks of substance abuse with tobacco, alcohol or other drugs in Huntington's disease (HD). Does using -- or abusing these substances cause an earlier onset of disease or faster rate of progression in Huntington's disease? Although "common...