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By Matthew Santamaria (msantamaria@hdsa.org)

NOTE: The following story discusses the topic of suicide.  If you are feeling suicidal or have suicidal thoughts, visit the National Suicide Prevention Lifeline or call 1-800-273-8255.  

Florida resident Michael Dreikorn has served in the military. He has also stepped into politics running for County Commission, Senate, and Congress. Michael is currently the Fire Commissioner of the Matlacha area.

However, his main passion is the life that he shares with his wife, Darlene, who is diagnosed with the gene that cause 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 during their prime working years and has no cure.
 

Darlene’s grandfather was symptomatic as he was known as “town drunk” but that is how he was perceived by others who may have been unfamiliar with the symptoms of HD.

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

Her grandfather would later take his own life. 
 

According to Michael, there was a lack of conversations about HD and the risk of family members. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.

Darlene’s mother began to have behavioral issues and was thrown out of Church. According to Michael, the family placed her in a long term care facility as they have had mixed feelings about HD.

Darlene and Michael had previous marriages. They would eventually meet and fall in love. Before meeting Michael, Darlene did not travel. Then, the couple would travel the world together and put the HD risk on the back burner. The couple wanted to live life by their choice.
 

However, about three years ago, Darlene began to experience HD symptoms including moodiness and aggression. According to Michael, their neurologist did not see HD before as more symptoms included slur words, and involuntary movements which freaked out the staff.

Darlene would then get tested for HD.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

It would take more than six months, but the test came back positive. At the time, they were not married yet as Darlene was afraid Michael would leave. However, he was committed and married on February 14th, Valentine’s Day.

According to Michael, he was concerned as Darlene lost more weight. They would soon meet with an HD specialist and was able to get her on the right medication. According to Michael, he was having a difficult time having Darlene being a part of HD trials because of the amount of people that sign up which led to a dark time as they felt alone in this battle.
 

HD Trialfinder is a clinical trial matching service: a way for individuals with HD, caregivers, healthy volunteers, and physicians to connect with current research studies. It includes an easy-to-use website and free call center staffed by trained HD clinical trial navigators. To learn more, click here

They have family in the New England area but feel comfort in HD support groups. According to Michael, this is important not only to individuals with HD but for caregivers as well. In his home, Darlene has music, art, and massage therapy which she has been engaged with.

In the HD support groups, Michael wants more people to get together and understand what needs to be approved for an individual with HD that needs hospice. To learn more, click here 
 
Michael has a message for the HD Community:

“We need to be smarter on how to be successful advocates for loved ones.” 

 
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Huntington’s disease (HD) 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 during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD 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.  

HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day. 

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