Me, Huntington's disease, and my physical activity

Here, people who have tested positive for the Huntington's disease gene, or who have received a diagnosis of symptomatic Huntington's disease, share their personal stories and experiences about how Huntington's disease has impacted them, and their physical activity. 

These insightful interviews shed some light on the difficulties that someone impacted by Huntington's disease may experience when participating in physical activity or are trying to make positive lifestyle changes to engage in more physical activity. Importantly, people also talk about what physical activity means to them and the positive aspects of being active. The aims of this part of the toolkit are:

• to help your understanding of what someone impacted by Huntington’s disease may be up against

• to provide hints and tips from an insider perspective when supporting somebody with Huntington’s disease to be active

• to help you identify what you may be able to do to be helpful on a practical level when supporting someone

Joe

Joe is a keen sports person in his 30s and is involved in various activities which includes refereeing rugby. Most recently he ran an incredible 50k in a day to raise awareness of Huntington's disease and funds for the Huntington’s Disease Association of England and Wales, raising over £10,000. You can read more about Joe’s challenge here. Joe is gene positive for Huntington’s disease is asymptomatic meaning that Joe isn’t experiencing any symptoms. In this podcast episode, Joe shares his background and experience of living with Huntington's disease in his family, his motivation to keep active, thoughts about physical activity and Huntington’s Disease, and tips for people who may support those with Huntington’s disease to be active.   

Carol and John

John was diagnosed with Huntington’s disease in 2019. He knew that Huntington's disease was in the family, but because his dad was never formally diagnosed, he thought he was ok. When he was in his late 50’s his wife Carol started noticing symptoms that could have been due to Huntington's disease from what she knew about it. It took another 4 – 5 years for John to receive a diagnosis, and finally John had an explanation for the symptoms he was experiencing. In this podcast episode, John and Carol talk about how Huntington's disease has affected daily life and taking part in physical activity.

Carly

As a young person in her 20’s, Carly is passionate about raising the profile of Huntington's disease and physical activity. In this episode Carly shares with us the impact that the positive gene test had on her personally at a particularly difficult time during the Covid 19 pandemic, and how this experience really propelled her into her passion and dedication to keeping active regularly. Having completed the 3 peaks challenge this year Carly speaks candidly about the opportunity this presented to meet and connect with other young people from families impacted by Huntington's disease and the experience of completing the physical challenge with them where they found long term friendships, mutual support in each other and a safe space to share stories, emotions, fears and hopes.