By Briana Vannozzi
Pointing to letters on a message board is one of the only ways Huntington’s patient Kristy Rita is able to communicate with her mom.
“Kristy was living on her own before she came here. She had a health care aide with her, but Kristy and I both decided it was just too much,” said Alice Krihak.
She’s a patient at JFK’s Hartwyck at Cedar Brook facility in Plainfield. It’s the only designated care facility in the state specializing in Huntington’s disease.
“Every day I get a call for another person that would like to come into the Hartwycks. There’s not that many beds. We only have 20 allocated HD beds,” said JFK Harwyck at Cedar Brook Director of Recreation and HD Services Karen Petrin.
“Some people are very high functioning before it starts and it can come on very insidiously, very slowly,” said JFK Medical Center Neuroscience Institute Movement Disorder Neurologist Dr. Philip Hanna.
But once it does, Dr. Hanna explains it’s just a matter of years before the progressive breakdown of nerve cells in the brain completely claims a patient’s life.
“So people get involuntary movements called chorea, which can affect balance and coordination and functioning. It also can affect your memory and cognitive functioning,” he said.
“It’s frustrating for them. Imagine being them. I mean, eight years ago Kristy was driving. Eight years ago Kristy was going out with friends and now all of a sudden the world that you knew is gone,” Krihak said.
It usually strikes patients during their 30s or 40s, but the onset may come as early as childhood. Children have a 50 percent chance of inheriting the disease from an affected parent. Kristy’s father died of it. Her brother has it too.
Parent Colleen Walsh knows the devastation.
“Both of my sons were diagnosed in their 20s. Miles lived to be 40 and my son Jason turned 40 in March and he’s at the end stage,” she said.
Now she advocates for her son Jason and the other 3,000 Huntington’s patients living in the state.
“I retired from work and kept my sons with me as long as I possibly could so the lack of services is huge,” she said.
The Hartwyck Center is a one-stop shop. Speech therapists, occupational and recreational therapists care for residents around the clock.
“As the disease progresses, the speech intelligibility declines and so it takes a lot more time for us to understand what the residents are saying and what their needs are,” said JFK Hartwyck Charge Nurse Carole Allen.
Because there are so few services available, often patients with HD will be mixed into nursing homes or other facilities where they get care, but it might not be the intensive care that they need.
“I waited three months for the bed for Miles. Unfortunately there was no bed for Jason so he had to be in Greystone for six months which was, I can’t say enough about the staff at Greystone, but you have violent people and he couldn’t defend himself,” Walsh said.
The families here plan to attend a meeting with the FDA and Congress in September, urging research and more resources.
“Because you can’t communicate people think that you don’t understand, but the part of your brain that understands and processes information is still intact, so you’re basically locked into this terrible body. So you know what’s going on,” Walsh said.
And they want their voices to be heard.