How changes in the brain due to Huntington’s affect my brother
He's not aware of it, but his executive dysfunction has led to cognitive decline
Five years ago, I grew increasingly concerned about my brother, Gavin. He was aggressive, angry, anxious, self-neglecting, and unemployed, and he appeared to be coping poorly with his Huntington’s disease. I reached out to our local Huntington’s care adviser, who explained that most of my brother’s emotional and behavioral symptoms were because of problems with his executive function.
In the 11 years I’d spent caring for my dad, this term had never been mentioned to me. Executive functioning includes self-awareness, inhibition, nonverbal and verbal working memory, emotional regulation, motivational regulation, and planning and problem-solving. It occurs when Huntington’s disease causes changes in the brain leading to cognitive decline. Researching this aspect of the disease was a lightbulb moment for me, as it explained the early changes we saw in my brother and our dad, which preceded any motor symptoms by a decade.
After completing his teaching degree at the age of 24, my brother worked as a primary school teacher on a two-year contract, but he didn’t reapply for the job. He also didn’t put any effort into his job applications, sending out the same résumé for every one. He started to do part-time teaching work for an agency.
Gavin and his partner had a son together, but they parted when my brother was 31. He moved into a flat alone, having his son stay mostly on the weekends. He ended up reading electricity meters and doing factory work until he was in his mid-30s. Since then, he’s been unemployed. That was a major change, as he’d always wanted to work and pay his way.
At the time, he seemed anxious and needed our mother with him a lot, particularly when he was caring for his young son, as if he lacked confidence in his abilities as a dad. Losing interest in hobbies and social activities, he withdrew from friends and preferred to stay home.
He also had difficulties driving in his mid-30s, particularly with judging his speed and distance. He crashed into other vehicles while trying to park and pulled away, unaware he’d hit anything. He drove on flat tires and didn’t service the car. He didn’t understand why the oil light on his dashboard was lit up.
My brother today
He’s now 43 and struggles to understand that other people may have different points of view. He fixates on things and gets problems stuck in his head. My brother is unaware of his symptoms and believes he’s too young for the onset of Huntington’s.
The changes in his brain make switching focus between tasks extremely difficult. My brother can now cope with only one thing a day; any more causes him a huge amount of distress. We can’t visit him at home unannounced because he’ll lose his temper. He also struggles to make plans with us to meet up. He becomes angry if his routine changes.
Gavin has lost control of his behavior and struggles to regulate his emotions. He becomes angry quickly. He cannot adapt to his surroundings and has shouted at us in public. He says things that are insulting and hurtful to others.
He has short-term memory problems. He writes notes everywhere to remind him of the most basic daily events, such as watching a TV program. He struggles to read letters and text messages and won’t answer his phone. He also has time-management problems and becomes frustrated when tasks take longer and are harder to complete than he expects.
He suffers from obsessive-compulsive disorder. He lines up his food and medicines on the kitchen countertops and insists that the kitchen sink always be full of water. He loses his temper if the sink is emptied and the water is not put back at the same height or if we move any of his things.
My brother has moments that are more calm and lucid, when he’ll ask for help because he recognizes he needs it. There are times when he can still have a simple conversation, and he can still be kind and complimentary. In these moments, I feel the most heartbroken. In these moments, I can see my brother without his Huntington’s.
While I noticed the early cognitive difficulties in Gavin, medical professionals had a much harder time detecting them. These invisible changes have had a negative and profound impact on the way my brother has been able to live his life. They’ve caused huge amounts of upset and stress.
With Huntington’s disease, more awareness and training are needed to get the right help and support when it’s most needed.
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