By Daniel Claassen, MD
The last six months have been especially difficult for HD families and those who care for them. Just when you think there should be light at the end of the COVID tunnel, several setbacks on the clinical trial stage confront us. News of safety concerns, tolerability issues, side effects, and the ensuing decisions to stop, pause, or restart trials has left us all a little disconcerted. Of course, we shouldn’t be surprised, right? We are working in a research space, and one phrase I remind my patients is “If we knew what it is we were doing, it would not be called research, would it?
Some more thoughts about this topic, as I reflect on 2022.
- It’s OK to be frustrated. I have found that honesty with your patients and family members is a good thing. Very often patients come to us wearing “their Sunday best” (as my social work team likes to put it), but behind that façade lies much angst. Angst for the present symptoms, the future, and for those around them. I have become more willing to share these concerns with our patients—not in a “misery loves company” mindset, but as an honest appraisal of the nature of this disease.
- Hope comes in strange places. We equate hope to cures, or treatments, but my clinical conversations can refer to moments of joy that we can appreciate together. One of my dear patients who recently passed away would love to get her nails done, or get a Starbucks on the way to clinic. Her sister would love to see a smile on her face when she could share these relatively simple moments of joy.
- Mindfulness is a work-in-progress. My colleagues in psychology are putting together a wonderful course for HD families where we work through navigating stress and the complexities of HD in families. They have taught me that mindfulness—being aware of the present, your feelings, what you can control, and what you can’t—is a practice.
With this in mind, I hope you enjoy the current edition of HD Insights. In it, we have the beautiful story of a baby, reflections on the Roe v Wade decision and IVF for HD-free embryos, updates on wearable sensors, a look into an FDA listening session, a roundup on the recent trial news… plus we get to meet new folks at the HSG!
Dr. Claassen is Associate Professor of Neurology at Vanderbilt University, and Chief Editor of HD Insights.