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Knowing the end, living for the now

We all begin to die the moment we’re born, but most of us don’t have a good sense of how it will end.

At age 28, Jennifer Hill already has a good idea.

Actually, she’s pretty much known for four years.

That’s when a test confirmed what she suspected since she was 15 – she has what her mother had, Huntington’s disease, a hereditary, degenerative brain disorder for which there is no cure, one that affects about 30,000 people in the United States.

In about 10 years, given the extent of her genetic defect, she suspects she’ll probably begin to be hit by symptoms of the disease that can include dramatic mood swings, depression, forgetfulness, clumsiness, involuntary twitching, lack of coordination.

The average life span after onset of the disease is 10 to 20 years.

As the disease progresses, short-term memory and concentration diminish and involuntary movements of limbs, trunk and head increase.

The ability to walk, speak and swallow deteriorates until an individual can no longer care for himself or herself.

When the end comes, it’s frequently because a person chokes to death.

Too often, as happened with Jennifer’s mother, the depression caused by chemical changes in the brain leads to suicide.

"I like to see the glass as half-full rather than half-empty," Jennifer says as we sit inside the Claim Jumper restaurant at Town Square. "That’s what I tell the clients I counsel. You can’t accomplish anything if you see yourself as a victim."

A former special education teacher, she now is a mental health counselor who works with homeless adults as well as with children with anger management issues. Nothing makes her feel better than helping people, particularly children, see that beyond difficult family challenges are still opportunities for happiness.

"One of the things I dream of doing is opening a mental health facility just for children and adolescents," she says. "We don’t have enough to help kids with problems in this community. Maybe I can make it happen in four or five years."

President of the Las Vegas chapter of the Huntington’s Disease Society of America, Jennifer believes God gave her the disease for a reason. The way she sees it, if she talks about the disease enough, more people will donate money toward a cure. And if she’s a "guinea pig" for every clinical trial aimed at helping find a cure – the Cleveland Clinic Lou Ruvo Center for Brain Health has one coming up soon – maybe one will be found.

Every other month the Ruvo Center holds a clinic where those with Huntington’s can be seen by a neurologist, psychiatrist, physical therapist and clinical psychologist in the same morning. Medications can’t stop the disease’s progress but can minimize symptoms.

"There are concerns best addressed together," says Dr. Ryan Walsh, the clinic head who believes Jennifer’s positive attitude as head of an advocacy group for the disease is an inspiration for the 500 Nevadans who have it.

Jennifer smiles easily and often. She giggles when she recalls how she met the love of her life, a general contractor, during a bikini modeling gig.

Their marriage would have never taken place, she said, if he hadn’t convinced her that he would be there for her when the disease took hold regardless of whether they were married. She didn’t want a man trapped by marriage into being a caretaker.

"I’m so lucky now to know the power of that kind of love," she says.

Using a surrogate mother, the couple hopes to have a child, who won’t carry the defective chromosome, in the next year.

Jennifer wants the child to be basically fully grown before her symptoms become disabling, at a juncture in life where her husband can take over the parenting by himself.

"Raising a child is on my bucket list," she says. "I dream of it. I want to help make that child so happy, feel so loved."

Paul Harasim is the medical reporter for the Las Vegas Review-Journal. His column appears Mondays. Harasim can be reached at pharasim@reviewjournal.com or 702-387-2908.

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