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By Matthew Santamaria (msantamaria@hdsa.org)
 

In 1997, before graduating high school, Albany resident Joe Esposito met the love of his life, Nora.

However, their relationship would be tested.

Nora’s father was diagnosed with the gene that causes Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

“Like many families, we did not have a known history of HD and it took research and asking lots of questions to know what it was that changed our lives forever,” said Joe.

The family would gather more information from the Columbia University Medical Center. This is one of the 47 HDSA Centers of Excellence that provide an elite team approach to HD care and research. Professionals have extensive experience working with families affected by HD and work together to provide families the best HD care program.

The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, impaired judgement, involuntary movements, slurred speech, and significant weight loss.

Because of this, Nora wanted to make sure that Joe was okay with marrying her. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

Whether she was positive or negative for the disease, Joe did not care because he loved Nora and always wanted to be there for her. In 2005, the couple married. Later on, Nora tested positive for the gene that causes HD and Joe has never left her side.

In November, it will be there fourteenth wedding anniversary.

“Over those fourteen years, we’ve shared a passion for travel,” Joe explains. “With some help from our families, some planning decisions such as an affordable two family home, not starting our own family, and living a focus on the day in front of us instead of the future, we’ve compressed a lifetime of travel in to the time we have, and continue to do so today!”

In 2017, the couple went to the western national parks of Sequoia and Yosemite. That next year, they had a grand tour of Nova Scotia.

“We’ve adapted to the road trip lifestyle which is much easier with our wheelchair, etc,” Joe explains. “I truly believe that we are and will continue to live a life worth living, even in the face of what HD has brought and will bring us.”

Since 2013, Joe has been a remote employee based out of San Antonio. This allows him to be the primary caregiver for Nora. He has been a caregiver for the past six years.

“My mother in law has faithfully served as my coverage for respite and monthly business travel,” said Joe. “I do believe that these few days a month have been critical in keeping my positive attitude and motivation as things get progressively harder.”

As a caregiver, Joe uses technology to his advantage. In 2016, the couple moved into a condo. He had the opportunity to implement a smart home.

“While automating things like window shades, lights, and our door, I started coming up with novel uses for the technology to aid my job as caregiver,” Joe explains. “This has evolved over time as our needs have changed, but the key pieces were critical during the very hard transition years where Nora went from ambulatory to needing 100% assistance getting around.”

Joe has used Amazon products to his advantage as the symptoms started to progress for Nora.

“Amazon Alexa devices serve as a two way intercom, especially helpful as her ability to hold and use a phone diminished,” Joe explains. “Now that she needs help 100% of the time, we implemented ‘call buttons’ with another Amazon product that Announce through our home (or my mother in laws home) as well as sends push notifications to our phones. Finally, at my house it even blinks the lights in my office, in case I’m on the phone or have headphones on.”

Joe has become involved with HDSA’s Albany Chapter as a board member. He has attended to Education Days and a few HDSA National Conventions. He continues to support the love of his life and remains hopeful that there will be a cure someday.

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org