Helping each other is one of the few positives of having a rare disease

A neighbor recently told my wife, Jill, and me that her eyesight is getting worse, so she can’t continue reading, which is her favorite pastime. Jill told her about a column I recently wrote about audiobooks, noting that they had helped Jill with her own reading difficulties and have become a source of empowerment for her.

Our neighbor was happy to hear Jill’s story, but she said her vision issues had made doing anything with technology too difficult. Jill acknowledged the frustration and opened up about using her computer’s assistive technology to deal with past issues. She added that she is seeking new ways to use it now in light of the challenges she faces as her Huntington’s disease progresses.

Jill said she has always had problems reading text on a page (she’s dyslexic), but processing written words has now become even harder. It was heart-wrenching to see the sadness on her face, but I could tell that it has motivated her to explore alternative solutions to help alleviate her struggles.

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A win is a win

Jill explained that assistive technology can help by making the screen easier to read. Font sizes and letter colors can be adjusted, and text can be highlighted. A computer can help in many other ways, too, so Jill promised to show our neighbor how.

When she sat down with our neighbor to do just that, she reminded her that some of the technology we use can, and will, sell personal data. She explained that it’s important to know what we’re willing to share and who we’re willing to share it with. She noted that things like phones and smart speakers allow us to use verbal commands, but that means we give the companies permission to always listen. Jill’s point was that we need to be aware of what we’re agreeing to before we decide to use any technology.

One of the services Jill uses to “read” is Audible, an online audiobook and podcast application. After she showed our neighbor how to use it, I could see the happiness on Jill’s face.

I can’t think of any benefits to Jill having a rare disease. But that day, seeing how she felt after helping our neighbor reminded me why I write this column (with Jill’s permission): Anytime we can help someone deal with their own suffering is a win. And when dealing with a disease that piles on defeat after defeat, a win is always welcomed.

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.