Submitted photo Dan Hott and his wife, Angie , center, with their children from left: Isaac, 14; Levi, 13; Violet, 18; Caity George and her husband, Brian George. The Hott family will visit Washington, D.C. Monday to advocate at The Parkinson’s Policy Forum.
BERKELEY SPRINGS — A decade ago, the Hott family of Berkeley Springs didn’t know anything about Parkinson’s Disease.
They were a typical family just going about their daily lives. But suddenly, things changed.
Dan Hott was diagnosed with Parkinson’s. His family said it was possibly due to a strange incident when he was in the Air Force more than 30 years ago.
For the second year, Angie and Dan Hott will go to Washington, D.C. to be part of a Parkinson’s Policy Forum. Angie has become a diligent researcher of the disease, a West Virginia team leader and blogger on the subject.
The Hotts applied for a grant to pay for the trip and to tell their own personal story. Dan and Angie, along with Levi, 13, and high school senior Violet, will join more than 300 other advocates Monday to meet with their members of Congress. They will share their stories of the personal impact Parkinson’s Disease has made on their lives and the lives of their loved ones.
According to www.parkinson.org, Parkinson’s Disease affects an estimated 1 million Americans and 10 million worldwide. It is the second-most common neurodegenerative disease after Alzheimer’s, and is the 14th leading cause of death in the United States. It is associated with a progressive loss of motor control (shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (depression and anxiety). There is no cure for Parkinson’s, and 60,000 new cases are diagnosed each year in the United States.
The 2018 Parkinson’s Policy Forum is an annual event for people with Parkinson’s and their families, care partners, and friends who are interested in public policy advocacy. Advocates from nearly all 50 states attend. It will feature two days of training, followed by one day of advocacy, congressional outreach, and education to members of Congress on Capitol Hill. It is co-hosted by the Parkinson’s Foundation and The Michael J. Fox Foundation for Parkinson’s Research. The event is also supported by nine other Parkinson’s organizations across the country.
Forum delegates will educate lawmakers on the need for federal funding for research toward a cure for Parkinson’s, and policy support for those living with the disease.
The attendees will receive tools to develop and hone their skills for effective public policy advocacy as they prepare to meet with their senators and representatives. Attendees will hear from scientific and policy experts at the Parkinson’s Foundation and The Michael J. Fox Foundation on the latest developments in Parkinson’s research. Panelists also will highlight recent legislative action to increase access to health care services, including the elimination of the Medicare therapy cap, which advocates worked for many years to remove.
“I’m honored to attend the Parkinson’s Policy Forum to represent the Parkinson’s community on Capitol Hill on these important issues,” Dan Hott said. “Angie and I reach out to my senators and representative year-round at town halls and local meetings, as well as through email and phone calls, but the chance to come together with hundreds of people like me, share our journey and show our nation’s leaders what it means to live with Parkinson’s disease, is powerful.”
At Thanksgiving 2007, Dan began to carve the turkey. But, he had a strange cramp in his hand. Shortly after, his left leg starting wanting to cramp up and drag. He thought he might have Lyme disease and went to the doctor. What followed was a round of doctor visits, and tests. He was diagnosed with Parkinson’s. It may have been because of radiation, he said.
When he was stationed in Nevada in the 1970s, Dan said he was around the radar ranges in the desert. He said his job was to play a Russian in simulations to train pilots to survive warfare during surface to air missile strikes. One day, a technician was working on some of the equipment. He was told to walk out to the site and get a progress report.
“I stood there talking to him,” Dan said. “And my head started heating up. I jumped back, and found out he’d turned the equipment on while working on it and had forgotten. I was standing there and got radiated on one side of my body.”
He reported the accident to his superiors, who sent him to the doctor at Brooks AFB in San Antonio. He was told the radiation he’d been exposed to was well over personal exposure limits.
“The doctor gave me the report and told me to hang onto it,” Dan said. “He said some day down the road, maybe years, something could happen to me. He just didn’t know what.”
The “what” was Parkinson’s. Angie began writing letters to a scientist to ask for answers. This was a new world for them, and she had to become a good researcher. She found out about a Department of Defense program testing microwave radiation effects on mice and if they could contract Parkinson’s. So, she found out the radiation may have contributed to Dan’s Parkinson’s. A neurologist confirmed it was possible. They might not ever know for certain.
Dan was an environmental engineer and ran his own consulting business. He began having more symptoms, which required him to close the company due to safety concerns.
“I had my own insurance, which was canceled,” Dan said. “I had to go on the West Virginia high risk insurance, and we got catastrophic coverage,” he said.
The Parkinson’s not only has affected his muscles and mobility, but his cognitive skills. He has some memory issues. He was approved for disability a few years ago.
Dan continues to have mobility issues, rigidity of his muscles and cognitive skill issues. He has participated in studies at Johns Hopkins through the Michael J. Fox Foundation, and worked with a neurologist from the Baltimore Veterans Administration. He’s still in a movement disorder clinic by the University of Maryland in Baltimore.
Dan will also meet with Sens. Shelley Moore Capito, R-W.Va., and Joe Manchin, D-W.Va., and staff to talk about the need to provide federal funding for Parkinson’s research programs at the Centers for Disease Control and Prevention, National Institutes of Health, and the Department of Defense.
“Research for something like Parkinson’s is a line item in the national budget,” said Angie. “It has to be voted on. We will be there to put a personal face on Parkinson’s and to ask our legislators to continue funding drugs and research. If the government didn’t fund it, therapies in the works would not progress. This is an incurable, progressive disease. Dan has to take a lot of medications every day, and they change as the illness progresses.”
Angie said they have four children. Some of their kids were young when Dan was diagnosed.
“I realized recently that most of our children don’t remember Dan before he had Parkinson’s,” said Angie. “It’s really made an impression on our lives.”
Some of that impression has been positive. Daughter Violet wants to be a doctor.
Angie said, “Violet graduates from Berkeley Springs High School this year and is interested in neuroscience. She found a class at Brown University learning about neuroscience. She’s going to Columbia in the fall and is going with us to the Policy Forum to learn about research. Levi, our 13-year-old, has started making videos to share.”
Levi’s video “My Dad Has Parkinson’s: Neuroscience is…Cool!” is from the 2018 NeuroFilmFestival.
For more information, visit www.parkinson.org or call (800) 4PD-INFO (473-4636). Angie Hott’s blog is at www .excusemecanitellyousomething.blogspot.com.
http://www.journal-news.net/news/local-news/2018/03/family-to-attend-parkinsons-policy-forum/
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