A Shift in Perspective Regarding Weight Loss With Huntington’s

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by Carlos Briceño |

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Since my wife, Jill, was diagnosed with Huntington’s disease (HD) in 2018, she’s been concerned about something that plagued her father for a long time before he died from the same condition: weight loss.

Jill’s father was in good health when he was diagnosed with HD, but during his decline, he started having issues with swallowing, also known as dysphagia.

At 6 feet, 2 inches tall, and weighing more than 200 pounds, Jill’s father was a big man. But because he couldn’t swallow well, he lost so much weight that he became gaunt, which led him to have a feeding tube inserted.

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Jill did not want this to be her fate. She has deliberately and steadily gained weight over the past several years because she feared losing weight one day.

She understood the risks, but felt that the good outweighed the bad. However, after getting the results of a blood test during an annual physical a few weeks ago, she has changed her mind. Her LDL, or “bad cholesterol,” levels were too high, and her HDL, or “good cholesterol,” levels were too low.

I did some research and found that high cholesterol can cause fatty deposits to develop in a person’s blood vessels, which can make it difficult for enough blood to flow through arteries, potentially leading to a heart attack or stroke.

I didn’t want any of that to happen to Jill, so I asked her what she thought about her blood work and what she planned to do about it.

She said she now realizes that her thoughts about weight gain were flawed because they were based on fear of the future. She now fears her concerns may have been misplaced, and admits she was being shortsighted.

Jill said that if she suffers a stroke or heart attack in the next few years because of a bad diet and lack of exercise, she will have lost the Huntington’s battle before it’s even begun to truly devastate her body and mind.

I’m happy she discovered her cholesterol was high before it began to adversely affect her health, but I’m even more excited that she has decided to change her lifestyle. Breaking unhealthy habits isn’t easy, but the decision wasn’t difficult for Jill. As much as she doesn’t want to starve in the future, she would rather worry about today.

Even though having a terminal illness means she is not truly in control of her health, Jill hopes she can remain “healthy” as long as she can by doing things she can control — like eating healthily and exercising as much as possible.


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.


Lynn Clemmer avatar

Lynn Clemmer

I too have HD. I was diagnosed at age 55. Obvious symptoms started around age 60 - mostly memory issues. Our family history is for late onset HD. I am a 6'-1" tall male, and weighed 335 lb. I decided then to lose weight gradually even though I knew about the involuntary weight loss that is in my future. I currently weigh 255 with a goal of 220.

I am currently 72 years old. I am often unpopular as a participant in drug trials because my symptoms change too slowly, but I do participate whenever I can.

Carlos Briceño avatar

Carlos Briceño

Thank you for sharing your story and I applaud your desire and willingness to get healthier.


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