The importance of sharing wisdom with others touched by HD

This awareness month, remember the power of your lived experiences

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by Carlos Briceño |

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Watching my wife, Jill, give advice to people touched by Huntington’s disease (HD) during a recent online support group meeting reminded me of the importance of sharing wisdom. Knowing she’s gene-positive for the rare, terminal illness she inherited from her late father has given her the opportunity to share her knowledge before HD takes away her ability to do so.

I’m writing this column during Huntington’s Disease Awareness Month because it’s imperative that those affected by HD — whether they have it themselves or love someone who does — share their knowledge and wisdom with others.

One of the many wonderful things about Jill is that she likes to look at things differently, which has helped her see the big picture and give spot-on advice.

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Five photos showing people affected by Huntington's disease, who are sharing their real-life stories during Huntington's Disease Awareness Month, are hung with clips on a string above the words 'Community Spotlight.'

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Jill’s approach

Here’s an example. Not long after we were married, we were invited to a baby shower. As we headed to Target to shop, I asked if we were getting something off the expectant parents’ wish list, but Jill shook her head no.

After we arrived at the store, she picked up a large towel and headed for an area that didn’t look as if it had anything for newborns. I wondered why. As she grabbed several outfits in increasing sizes, she explained that everyone wants to buy things for an infant. And while those things are supercute, the baby doesn’t stay tiny for long. They grow quickly and change sizes so rapidly that parents may not even have a chance to use all of the clothes bought for them.

“We have to think ahead for them by getting stuff that will fit in the future,” she said.

Then she walked over to the stroller section. I looked at the expensive prices and wondered how much she was going to spend. Jill just smiled and grabbed a small, inexpensive thing called an umbrella stroller. Another explanation was needed.

Jill said that after the birth of her child — my stepdaughter, Alexus — her mom told her that the big expensive strollers are wonderful, but they’re also heavy, bulky, and eventually require too much effort for day-to-day activities. Jill discovered that her mom was right. The bigger stroller became a clothes hanger, and the umbrella stroller her mom had purchased became the one she used.

When Jill and I left for the baby shower, she used the towel, which was also a gift, to wrap the clothes. I realized that what Jill does is simple. She listens to advice and then acts thoughtfully and practically based on her own experiences. She doesn’t just follow the crowd; she truly considers what benefits others.

I love Jill’s approach to giving advice. It’s not about doling out generic tips, but sharing insights gained through lived experiences.

In many ways, Jill’s ability to offer guidance extends beyond practical matters like baby showers. During her journey with HD, starting with being a caregiver to her father, she has amassed a wealth of knowledge about navigating life’s challenges with grace and resilience. Whether it’s managing symptoms, coping with emotional hurdles, or finding joy in the smallest moments, Jill has a knack for distilling her experiences into valuable nuggets of advice.

As we navigate this journey together, I find myself constantly in awe of her strength and positivity. Despite the uncertainties that lie ahead, Jill remains steadfast in her determination to make a difference, to share her wisdom with others touched by HD, and to live each day to the fullest.

This month is a reminder of the power of advice. When shared with love, humor, and genuine care, our wisdom and suggestions have the ability to uplift, inspire, and make a lasting impact on those who receive it. I’m eternally grateful to have Jill by my side, guiding me with her light through the darkness and chaos of life with HD.

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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