Additional support helps us weather the storm of Huntington’s

“Find another oak to weather the storm with you.” — author Deepak Chopra

I’ve always likened caring for someone with Huntington’s disease (HD) to navigating a storm, with waves of difficult times crashing over you. Eventually, the storm clears and the waters grow calm again, but you know another storm will arrive soon.

My brother, Gavin, was diagnosed with Huntington’s in January 2022, at age 42. We lost our dad to the disease in 2020, and before that, it took the lives of our grandfather and great-grandmother.

Gavin’s cognitive symptoms have been incredibly difficult for our family to manage. He is often angry, aggressive, confused, and anxious, which puts a strain on our relationships and on us as individuals.

We’ve been fortunate to be appointed an excellent social worker, who has researched HD on her own time and taken time to get to know Gavin and our family. She sought help from our regional care adviser at the Huntington’s Disease Association, who shared strategies to help engage with Gavin. This has been key to understanding my brother and gaining his trust.

All of this has enabled us to begin introducing a personal assistant named Robin, who is similar in age to Gavin and shares his love of football.

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Because my brother experiences a neurological denial of his symptoms, it has been incredibly difficult to approach the subject of a personal assistant. However, Gavin struggles with planning, attending, and finding transportation to and from medical appointments, so we’ve suggested this might be an area where Robin could help. Slowly, over many weeks, my brother has started coming around to the idea.

Robin visited Gavin with the social worker recently. Gavin chatted with Robin in a pleasant way, without shouting or feeling angry, taking time to pause and allow others to speak. This is quite the opposite of his usual behavior. He even laughed and smiled, which was a side of him the social worker had never seen. I wondered if the conversation reminded Gavin of how things used to be, when he would spend time with friends at the pub, chatting and having fun.

Many of Gavin’s friends began to drift away as his behavior became strange, angry, and aggressive. No one understood at the time what was happening and found the changes too difficult and upsetting to manage. This resulted in him feeling isolated and withdrawing socially.

Robin is currently visiting for one hour every Monday; this is a day, time, and frequency Gavin has chosen. Feeling in control helps to reduce his anxiety and stress. We hope to increase these visits as my brother feels more comfortable.

Robin has started to take Gavin to some medical appointments, which Gavin refused to attend in the past. Gavin trusts Robin. Robin allows Gavin to lead and to use him how he chooses during their time together. My brother seems to respond well to another man and someone outside of the family.

It’s amazing that we’ve reached this point; it just shows that with the right approach, planning, and patience, it’s possible to achieve a positive response from Gavin. I’m sure there will be some bumps in the road ahead, but I’m also sure that Robin will have a positive impact on Gavin’s life — not just from a medical point of view, but socially, too.

In Robin, we have certainly found another oak to weather the storms with us.

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.