“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” — Stephen Hawking 

Huntington’s disease affected both my dad’s and my brother Gavin’s ability to work a decade before their motor symptoms were visible to us.

Huntington’s disease also claimed the lives of our grandfather and great-grandmother. I tested negative for the disease in the summer of 2023.

Our dad had worked successfully in local government, in an administrative position leading his own team. He was organized, had great communication with others, gave good customer service, and was excellent with his time management. He was a responsible man capable of multitasking. Unfortunately, these skills were all affected by the cognitive changes caused by nerve cell damage due to Huntington’s disease.

Dad eventually lost his job due to the cognitive difficulties he was experiencing. Afterward, he got a filing job at a local hospital, but he couldn’t keep up with the pace and struggled to file and retrieve documents fast enough. He lost that job shortly after being hired.

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Gavin received a teaching degree specializing in physical education. He loved physical education, and soccer in particular. He was resilient in high-stress situations and could work under pressure. He was compassionate, empathetic, and had the ability to collaborate and communicate with his fellow colleagues. He was patient and flexible.

He moved away with his girlfriend at the time and worked as a primary school teacher on a two-year contract. He was invited to reapply for the job at the end of the contract but didn’t. He left both the job and his girlfriend, but never explained to us why. I can only assume that he was experiencing the same cognitive difficulties as our dad and couldn’t keep up at work. It must have also affected his relationship with his girlfriend.

He did some substitute teaching through an agency for a time and then later was a meter reader and a factory worker, but those jobs never lasted long.

A survey in 2021 of neurologists and Huntington’s patients in the U.S. found that over 50% had stopped working due to worsening of cognitive symptoms that affected their ability to complete everyday tasks. These people had chorea, a common Huntington’s symptom involving involuntary movement, along with other symptoms.

The Huntington’s Disease Association in the U.K. has specialist care advisers that can work with employers to suggest reasonable adjustments in the workplace, as well as modifications to an employee’s role to help maintain employment longer for Huntington’s patients.

Medication, occupational therapy, and physiotherapy are also beneficial for supporting someone with Huntington’s disease and helping them to stay employed longer.

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.


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