8 Ways Huntington’s Disease Changed My Life for the Better

8 Ways Huntington’s Disease Changed My Life for the Better

I’m sure the headline of this column made you look twice. No, that’s not a typo. You might be saying right now: “How could anything associated with Huntington’s disease make my life better?”

I get it. I understand firsthand what a horrible condition Huntington’s disease (HD) is. It’s not my goal to minimize the suffering that people like me go through as a direct result of Huntington’s disease. HD brings a great deal of negativity along with it, and if negative thinking consumes every aspect of a journey, then one’s quality of life will diminish. It’s not healthy.

This week, it’s all about positivity! Following is a list of eight ways Huntington’s disease has changed my life for the better.

1. The community

I’ve found friends in the HD community who amaze me every day. This includes members of my local Huntington Society of Canada chapter, individuals I’ve met at education sessions, and participants in fundraising events.

2. I’ve come to forgive my father

For several years, I harbored resentment toward my father. Before we knew he had the Huntington’s disease gene, I made assumptions about the root cause of his behavior and personality changes that I now understand are likely related to his progressing HD. I have come to forgive him, and I’ve forgiven myself for being wrong about what was happening to him.

3. Conferences

Every couple of years, I get to travel to another beautiful part of the country for national conferences. Being present among so many individuals, loved ones, and families affected directly by Huntington’s disease has played a vital role in my learning how to cope with being gene positive for HD. There is no better way to see proof that you are not alone in your Huntington’s disease journey than seeing a conference hall filled with hundreds of other people like you.

4. Putting the ‘fun’ in fundraising

The joy I receive from fundraising is immense. I love to see dollars flowing into HD societies for research and community support. We are so close to getting a treatment! Every dollar counts toward this mutual goal, and watching it happen is exceptionally rewarding.

5. Learning from others

Being part of the Huntington’s disease community and participating in events directed at raising awareness has allowed me to meet inspiring people who live and thrive with other chronic and rare diseases. I’ve learned so much from them.

6. Mindfulness

I’ve become more cognizant of all the little, yet amazing, bits of life going on around me all the time, like my kids doing something new. I try to appreciate these things every day. That is not always easy. I have my bad days. Being mindful of these positive moments and ensuring that I pause to take them in and enjoy them has been beneficial to my mental health.

7. Empathy

I have an increased understanding of the struggles caregivers and families go through, which has made me a more empathetic person overall. This manifests through my work as a registered nurse and my support of other local individuals and families with Huntington’s disease.

8. Writing

I get to interact with you! Chronicling my experiences with HD and sharing that writing in a book, on social media, and here at Huntington’s Disease News has exposed me to people all over the world who I may not have otherwise met. I am so grateful for that, so thank you!

Find your joys

I encourage you to seek positivity, even if you are not optimistic you will find anything of a positive nature. Perhaps it’s your interactions with other HD affected individuals or families on Facebook. Maybe it’s learning about all the exciting research in search of an effective treatment for Huntington’s disease. Whatever the source of positivity is, grab onto it and soak in it!


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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.

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  1. Kathy Martinek says:

    Thank you, Steven! Congratulations on seeking and finding the positives in your life. Many people say their symptoms and quality of life improve when they see the bright side. Please keep posting articles like this. It is so motivating.

  2. April says:

    Steven,I did not get to catch the name of the book you wrote!??? If I’m correct if you have may I get the name of it? I would love to read it. And your positive outlook land attitude is such a beautiful inspiration! May God Bless you 🙏

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