7 self-care tips I live by with Huntington’s disease

Living with Huntington’s disease (HD) can feel like an uphill battle, but self-care can make a meaningful difference in managing its symptoms. The key to a successful self-care routine lies in personalizing it to fit your unique needs and lifestyle.

These seven tips have helped me manage my HD symptoms:

1. Listen to your body: Huntington’s affects everyone differently, so pay attention to what your body is telling you. Are you feeling fatigued? Experiencing chorea? Try to notice patterns in your symptoms and adjust your routine accordingly. For instance, if mornings are particularly difficult, schedule gentler activities, such as meditation or light stretching, during that time and save more demanding tasks for when you have more energy.

I keep a journal to track my healthcare regimen, mood, and symptoms. It helps me tailor the activities and routines that are most beneficial. By tuning in to my body’s signals, I can design a self-care plan that supports my physical and emotional needs.

2. Prioritize rest and sleep: Quality sleep is essential for everyone, but it’s especially crucial for people with HD. Fatigue can exacerbate symptoms like brain fog, involuntary movement, and irritability. Establishing a consistent sleep routine — such as going to bed and waking up at the same time each day — can help regulate your body’s internal clock.

I try to have the same bedtime every night if possible. I aim for six to eight hours of sleep per night. I start my nighttime routine approximately 90 minutes before I get into bed. I limit my screen time and use an aromatherapy diffuser. I like using lavender as a scent for the evening. I also do guided meditation for about 10 minutes to wind down.

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3. Incorporate physical activity: Exercise has numerous benefits for people with HD, including improved mood, better balance, and reduced muscle stiffness. The type of activity you choose depends on your abilities and preferences. Low-impact exercises such as yoga, qigong, and tai chi can be great for improving flexibility and reducing stress.

When mobility was a concern for me, I practiced seated exercises or simple stretches done from a chair. Now I’m able to take walks without using any devices. Always consult your doctor or physical therapist first to ensure that the activities you choose are safe and appropriate for your condition.

4. Nourish your body with healthy foods: Eating a well-balanced diet is an integral part of self-care. A nutrient-rich diet can help you maintain energy levels, support brain health, and manage weight changes that are common with HD. Focus on incorporating plenty of fruits, vegetables, whole grains, lean proteins, and healthy fats into your meals.

I consulted with a registered dietitian to create a meal plan that’s beneficial for me. My diet is inspired by brain-healthy foods such as salmon, green leafy vegetables, and protein smoothies. Please consult with a dietitian for a diet that’s most compatible for you.

5. Manage stress proactively: Stress can worsen HD symptoms, so finding effective ways to manage it is critical. Explore relaxation techniques that resonate with you, such as deep breathing exercises, mindfulness meditation, or guided imagery. Engaging in hobbies like gardening, knitting, or painting can also serve as creative outlets for stress relief.

I’ve developed a support system that helps me manage stress in the most amazing ways. For example, I have a psychiatrist and a psychologist at my Huntington’s Disease Society of America Center of Excellence. I’ve also developed tools to help me daily, and I’m a huge fan of guided meditation.

6. Set realistic goals and boundaries: With HD, it can be hard to complete tasks the way you once did, which is frustrating. Instead of focusing on what you can’t do, set small, realistic goals that allow you to celebrate wins. For example, if you’re struggling with household chores, break them into manageable steps and tackle one task at a time.

I’ve learned that asking for help to accomplish my goals has made a huge difference. I’ll reach out to family members to ask for help with household chores that are difficult, such as heavy lifting.

7. Celebrate joy and practice gratitude: Living with HD can be overwhelming, but finding moments of joy and gratitude can shift your perspective. Keep a gratitude journal to jot down three things you’re thankful for each day, no matter how small. This practice can help you cultivate a positive mindset and focus on the good in your life.

Don’t skip this part! Writing down things I’m grateful for is humbling. This keeps me focused and motivated on my personal growth and development journey.

Creating a personalized self-care routine while living with HD isn’t about perfection; it’s about progress. Start small, experiment with what works for you, and be kind to yourself throughout the process. Remember that self-care is not selfish; it’s an essential part of managing your health and living your best life.

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.