A Note From the Editor
Dear Health Professional,
I am not faculty. I am a research nurse for PD, HD, dystonia, and essential tremor and nurse practitioner for Huntington’s disease. All I can teach is the lifetime care of people in families with Huntington’s disease. I am the person who sees 11-year-olds to help them understand about HD in their affected parent and then help them along the way through genetic testing issues, reproductive issues, medication issues, mid-stage boredom and the need to do new things to feel good despite cognitive deficits, increasing clumsiness and emotional changes. The boredom issue led me and others to develop summer camp, therapeutic horseback riding and adaptive ski programs which ameliorate the boredom for people with HD as we teach the next generation of health professionals about people with HD.
Although I have authored advance directive guidelines, including brain donation, I have not until recently focused on the care of the advanced HD patient. It used to be known as “cradle-to-grave” care, but most people never slept in a cradle and cremation has overtaken graves long ago. I will go to any country to learn how they do it or fail to do it in order to help all of us do it better. I have a passion for HD born out of my love for folk music, Woody Guthrie and my first in-hospital patients who did not seem to reflect what was written in the nursing literature. I love the surprises, their amazing strengths, the impossible situations they get into, the successes that come from never giving up until I’ve figured it out, usually with their help. They make me laugh, and of course I get teary when the sadness pushes through. They are my heroes. I tell their stories to help other families get through the crises.
Why write this now? I believe you must explore the unmet needs of your patient population, find your passion, learn from your colleagues, learn from your families, then carry it through to papers, posters, presentations and, most needed of all, evidence-based outcomes research. We must establish in the literature why our work really matters.
Carol Brown Moskowitz, APRN-C
Senior Staff Associate
New York, NY