Web Producer: Jason Bailey
Rick Hasenbein, 43, was a limo driver for years, until he started some strange and troubling symptoms. Hasenbein says that he experiencing difficulty doing something many of us take for granted. "I was twitching and, uh, having trouble walking. It would be harder to walk, and uh, and I had more twitchiness."
His wife started noticing the effect of the symptoms on Rick's face. "Grimaces in the face a lot, and the hands," says Sue Hasenbein, adding, "He'd be dropping things all the time."
These were early signs of Huntington's disease, also called Sue Huntington's Chorea, which refers to the uncontrollable twisting, almost dance-like movements it causes. Huntington's slowly destroys the patient's ability to walk and talk, leads to behavioral changes and dementia, and because there's no treatment or cure yet, it's ultimately fatal.
"His mind is still fairly clear, and just his body was giving way on him, and that's not, you know, not fair. Definitely not fair," says Sue. The failing of the body, the uncontrollable movements and difficulty walking that troubles Huntington's patients the most in its earlier stages.
That's what led Rick to volunteer for a clinical trial on a drug called Tetrabenazine. It works by interfering with dopamine, a brain chemical or neurotransmitter that seems to be in oversupply in Huntington's patients.
It worked for Rick and Sue tells us, "You know you sit there and he's got more control over his body, he feels a lot more secure which makes the biggest difference too. You know walking - he's not afraid to walk outside. People looking at him, and everything else. Makes a difference,"
Dr. Philip Hanna says, "We're very excited about this because really, it's the first medicine that's so well-tolerated, and very effective for the involuntary movements." Hanna says the tetrabenazine doesn't appear to lose effectiveness and has no long term side effects. It's nowhere near a cure - but it is hope. "This way, he's fighting and he's trying; he's doing okay and he's taking care of himself," says Hanna.
Most drugs used to treat the symptoms of Huntington's Disease have side effects like fatigue, restlessness, or hyperexcitability. It is extremely important for people with Huntington's Disease to maintain physical fitness as much as possible. Individuals who exercise and keep active tend to do better than those who do not.