We can’t get yesterday back, but we can have a better tomorrow
My sense that lifestyle as well as genes affects disease onset and progression
“Yesterday/ All my troubles seemed so far away/ Now it looks as though they’re here to stay/ Oh, I believe in yesterday/ Suddenly/ I’m not half the man I used to be/ There’s a shadow hanging over me.”
My dad and I loved listening to the Beatles’ “Yesterday,” from which I’ve quoted above, when we were together. When I listen to it now, though, I think of Huntington’s disease. I think about how Dad must’ve felt, hearing those lyrics after he was diagnosed in December 2009, at age 57.
My brother, Gavin, was diagnosed in January 2022, at age 42. It’s also taken the lives of our grandfather and great-grandmother. But I’m negative, according to my own test result last summer, when I was 46.
Since 1993, Huntington’s has been diagnosed using a blood test to analyze mutations on the HTT gene. It’s caused by what’s known as a CAG trinucleotide repeat expansion on the HTT gene. Normally, people have between 10 and 35 repeats of this sequence; those with more than 40 repeats generally develop Huntington’s.
Our dad had 42 CAG repeats. Unfortunately, Gavin has 45.
I’d always been led to believe that Huntington’s disease struck at a similar age in each generation of the same family. But when Gavin started displaying Huntington’s symptoms 15 years earlier than when they’d started in our dad, I realized I must’ve been mistaken.
Unfortunately, as time and Gavin’s symptoms progressed, I learned that the repeat size can expand between generations, that this can become more likely through the paternal line, and that more repeats can bring earlier onset, along with stronger symptoms and faster disease progression.
Lifestyle factors as well as genetics
My brother hasn’t exercised regularly in years and has a poor diet, full of processed foods, salt, sugar, and fat. He carries a lot of personal stress. He’s never taken any interest in reading or current affairs and has never enjoyed listening to music. He started to withdraw socially around 12 years ago.
Our dad was quite the opposite: He had a laid-back approach to life. He loved regular walks to the beach and cooking. He loved to read and listen to music, as well as the radio news. And Dad loved spending time with his family. When he became unwell and was unable to cook for himself, he allowed me to batch-cook meals for him, and the improvement in his overall condition was evident.
Our dad had fewer CAG repeats than my brother. It’s generally thought that the more CAG repeats there are, the earlier onset there’ll be. But I also think Dad’s lifestyle kept him in better health for longer and possibly delayed his onset.
Herwig Lange, a neurologist and psychiatrist at the University Hospital of Düsseldorf, in Germany, recently told Rare Disease Advisor that exercise, a good diet, and stress avoidance can delay Huntington’s disease onset for up to 20 years or longer. He believes these efforts, along with mental and social activity, can help keep Huntington’s patients in better health for a longer period of time.
Although we can’t get yesterday back, perhaps there’s a lesson for us all here: It’s so important to eat a healthy diet and exercise to balance the effects of any stress in our lives. We should also stay active with whatever and whoever brings us joy. That’ll bring a healthier tomorrow.
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.
About the Author
David McDonagh
Thank you Becky. Your articles are helping a lot of people with HD in their families. Whether negative or positive we still have HD. xx
Becky Field
Thank you so much, David. Your support mean a lot to me -Becky
Nancy Hansen
My husband's CAG repeat is 43 and he first displayed chorea symptoms at age 70. He's 85 now and his chorea is controlled with medication. He was a track star in college and has been physically active his whole life until the last 4-5 years. He eats well and has had a mostly low stress life until his dx at age 80.. He seems like a classic example of what you and Herwig Lange talks about above.
Becky Field
Dear Nancy, absolutely. How wonderful, such an example for others to follow. Lovely to hear such a positive story. Thank you for sharing -Becky