Virginia resident Mike Doherty was adopted and did not have access to his medical records. However, Mike would soon discover that he was at risk of inheriting the gene that causes Huntington’s disease (HD).
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.
It was more than ten years ago when Mike first developed HD-related symptoms. The symptoms of HD are described as having ALS, Parkinson’s, and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgment, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.
When he became symptomatic, Mike was a lawyer and started to have memory loss which affected his work. His wife, Emily, is a geneticist and convinced him to 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.
Mike would test positive for HD. His symptoms included shaking, depression, and chorea. His neurologist originally thought this was a side effect of the medication that he was taking. Mike would then stop his practice and his lawyer-assisted him with the disability process.
Applying for disability benefits is a necessity for most HD families, but the disability process is often complicated and overwhelming, whether it is a Social Security disability or a private disability. To learn more, click here
“Part of the difficulty with the disability process is having to come to terms with applying for disability,” said Allison Bartlett, HDSA’s Manager of Disability Programs. “There is always fear and concern about the difficulty of the process and how long it will take, but there is also sadness. No one wants to be forced to stop working because of an illness. Every client I have had said they would keep working if they could. It is okay to be sad and frustrated, that is part of the disability process, but remember that Social Security disability is a benefit that you pay into. If you need SSDI because of an HD diagnosis, you have earned that benefit and no one should feel bad about taking it.”
When he tested positive for HD, Mike and his wife explained the risk of HD to his two children. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. The family also talked to Dr. Bonnie Henning-Trestman, Director of the Carilion Clinic HD Program in Roanoke, Virginia. Mike and his family talk to Dr. Bonnie Henning-Trestman once a month. His children have taken the news differently but have a great support system.
Mike has symptoms now including angry moods but exercises to keep himself relaxed. He is also a recovering violinist and he loves blues music. Music therapy is used within a therapeutic relationship to address the physical, emotional, cognitive, and social needs of individuals. However, due to his chorea, Mike finds it difficult to play the violin.
Instead, he created a YouTube Channel called “HD Find The Funny”. He wanted to communicate with the HD Community in a light and comedic way rather than on topics that are difficult to talk about. His videos include talking about the symptoms of HD, physical therapy, and trivia against a fish.
Mike wants more people to be involved in the fight against HD which includes joining different clinical trials. Mike is a part of the Signal Trial, an investigational approach to early treatment of HD.
Mike has a message for the HD Community:
“Do not let HD define your whole life. Hang in there.”
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 email@example.com