5 questions I always ask doctors about managing Huntington’s

Healthcare for those with Huntington’s disease comes with complexities that often require a collaborative approach. Over the years, I’ve learned the value of being proactive on this journey by asking key questions to ensure that my providers and I are aligned. These questions not only help me understand my care plan, but also empower me to advocate for myself.

Here are the five essential questions I ask my healthcare providers to manage Huntington’s effectively and holistically.

1. How does my care plan address my current symptoms and potential progression?

For example, when my chorea — the involuntary movements associated with Huntington’s — became more pronounced, I was prescribed medications that I still take. When I discussed their possible side effects, I decided I’d still benefit from taking them. But I also asked about future considerations, such as physical and occupational therapies, to address my mobility and independence as the disease progresses.

By engaging in these forward-looking conversations, I feel more prepared to deal with symptoms as they arise.

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2. How can we address mental as well as physical health?

Mental health is a critical component of living with Huntington’s. Depression, anxiety, and irritability are common challenges, and they can feel as overwhelming as physical symptoms. I’ve learned that openly addressing mental health with my providers can make a significant difference.

I wanted treatment for depression and anxiety myself. Asking that question opens the door to discussing options such as antidepressants or mood stabilizers, as well as how they interact with other medications. By making mental health a care priority, I’m advocating for a balanced approach that addresses both mind and body.

3. What lifestyle modifications can I make to improve my quality of life?

Living with Huntington’s often means adjusting my lifestyle to accommodate the disease while I’m still pursuing activities that bring me joy. I ask my healthcare providers for tailored recommendations on diet, exercise, and stress management to support my well-being.

Diet, for instance, plays a crucial role in maintaining energy and managing symptoms. I’ve asked my providers about the most appropriate diet to achieve optimal health. I specifically consume a high-protein, low-carb diet, but please note that each person with Huntington’s may have different dietary needs based on their overall health and stage of disease. Staying hydrated is also key as part of eating a balanced diet.

Exercise is another topic in doctor conversations. I’ve asked about activities that are safe and beneficial, such as swimming or yoga, which help with balance and flexibility. Low-impact exercises are my personal favorites. My providers also stress the importance of rest and pacing myself, reminding me to listen to my body’s signals.

4. How do we communicate and coordinate care across my healthcare team?

Because Huntington’s affects multiple aspects of my health, I typically see a variety of specialists, including neurologists, psychiatrists, physical therapists, and dietitians. Effective communication among these providers is crucial, and I make it a point to ask how they coordinate my care.

I’ve found it helpful to designate one provider, usually my neurologist, as the primary point of contact to oversee my care plan. I also use this opportunity to ask about electronic health records and how my information is shared among team members. Are my appointments and updates streamlined? How are conflicts or overlapping treatment recommendations handled?

This question underscores the importance of teamwork and ensures that my providers work together to provide cohesive care. All of my medical providers are under the same hospital system, thankfully. I also have access to my records, which discuss notes, appointments, and medications. Such access gives me peace of mind to know that everyone’s on the same page.

5. What resources are available for my loved ones?

Huntington’s disease doesn’t only affect the person diagnosed; it affects the entire family. My care plan includes my loved ones, so I make it a point to ask about resources that support them as caregivers and advocates.

Are there educational materials to help my family understand Huntington’s and its progression? What respite care or support groups are available for caregivers? Are there genetic counseling services for family members who may be at risk?

I get benefits from support groups and Huntington’s organizations with conferences and educational days. They help me stay up to date with the latest medical research, connect with other Huntington’s families, and feel part of a large community.

If you’re living with Huntington’s or supporting someone who is, I encourage you to ask these questions and start meaningful conversations with your healthcare team. Together, we can ensure that care is not simply about managing symptoms but also helping us embrace life to the fullest.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.