NIAGARA FALLS – Like mother, like daughter. The phrase is usually said with a smile as a compliment, but not if you find you have inherited a rare and fatal genetic disease.
Huntington’s disease has hit Lynne Neveau’s family hard. Her late grandmother, Millie Paul, had it. Her mother, Doris Radle, has it. And so do three of her uncles.
In April, Neveau, 28, underwent genetic testing and tested positive. Huntington’s disease usually strikes in middle age, so in about 20 years, she too will develop the disease.
Huntington’s is a fatal genetic disorder with no cure. It causes the progressive breakdown of nerve cells in the brain. The disease affects movement, thinking skills and causes psychiatric disorders.
For Neveau’s family members, the symptoms started with spasms, then the loss of the ability to walk, or talk, or feed themselves. Her mother is unable to walk or talk. Over the next 10 years the disease will lead to a form of dementia.
Neveau, a graduate of Niagara Falls High School and the University at Albany, said that in addition to the genetic disease, she also has inherited her mother’s determination and joy for life. She is making it her goal to inform others about the disease, create a support network and fight the disease.
“It’s super, super rare. There is only 20,000 cases in the United States. However, in Niagara Falls it is not as rare. My grandma had it and she had seven children. There’s a 50 percent chance that her children would have it. Four of her children have it, including my mother,” Neveau said. “There was a 50 percent chance that me and my sister have it. I tested positive. In my early 50s I will lose my ability to walk and talk and will slowly go downhill. … I told myself that when I tested positive that I was going to be active and engaged in the process, and in government, to try and make changes despite the fact that’s it affects my personal privacy,” said Neveau. “I’m outgoing and have this outrageous personality. The universe gave me this for a reason.”
As former chief of staff for Assemblyman John Ceretto and as a community educator for Planned Parenthood, Neveau feels she is in a unique position to move the issue to the forefront.
Was it hard to make the decision to get tested to see if you tested positive for Huntington’s disease?
It was one of the hardest decisions I have had to make, but I’ve lived assuming that I had it. I went into it expecting the worst. I have a sister and 15 cousins and I am the only one that has been tested so far.
Has your mom ever apologized for passing this down to you?
She’s never apologized, but I also can’t blame her. She had no idea that she was at risk when she had me. I can’t hold it against her. I don’t talk to her about it because she’s already struggling so much that I don’t want to make her sadder. I don’t want her to feel guilty. I try to keep it as light-hearted as possible. I just don’t want to burden her.
Will it get to the point where she can’t understand you?
She’s going to get there eventually, but my mom has always had a really sharp memory. She knows everyone in the family’s social security number by heart. I’m hopeful that will mean it will take longer for her to lose her memory.
Tell me about your mom. I’m sure there’s a different side of her that we can’t see any longer.
My mom is still so joyful, so enthusiastic and excited. Despite the fact that she is going through all this there is still this unstoppable, positive human being. The one thing that my mom gave me and I’m so thankful for it, is a sense of joy and I’ll never be able to thank her enough for that.
It is surprising to me how upbeat you are.
There are days when it is hard for me to get out of bed, but then there are days when I say, “I’ve got 20 or 25 good years left on this planet and I’m going to go out and rock the universe.” I’m just hopeful that I can do really cool things until I can no longer do really cool things.
How long have you and Patrick been married?
Have you thought about not having kids?
There is fancy technology to make sure you don’t have kids with Huntington’s. They only take healthy eggs from the mother that don’t carry the gene. It’s so cool, but it is also very expensive. There’s not any place around here that does it and it costs thousands and thousands of dollars. Sadly, we recently decided that we are not going to have children. It’s not covered by insurance for the most part and the success rate is low.
Is there a positive side to getting tested?
Personally I think it’s a great idea to get tested. But I understand if people are hesitant or afraid. One of the benefits of getting tested is that you can participate in trials for drug research. It’s hard to get a diagnosis, but there’s end of life planning that has to be considered. We just bought a house and have to know if it is accessible to a wheelchair. There’s so much that goes into your life that Huntington’s impacts. I get it that it’s extremely terrifying, but you are going to get it anyway. You just can’t stick your head in the sand. But I understand. It was the hardest day of my life, but we celebrated just knowing and having as much information as possible.
Why is it important for the community to have more awareness about Huntington’s disease?
It’s super rare. There’s about 20,000 to 30,000 people in America that have it and another 150,000 that are at risk. There’s not much funding out there, so awareness is a way to keep it on the radar of hospitals and research institutions. I’m obviously passionate about finding a cure, but the more important thing is to create awareness so people in the community will feel more supported. If you test positive for Huntington’s disease you feel very isolated. I’m working to create a network or a support group in Western New York so there’s help and someone to talk them through it.
I would imagine it’s not so rare in this area with so many of your family getting it.
Yeah I always meet people who say they knew someone who had it so I created a Facebook page for it (Western New York Huntington’s Disease Support Group) and I am trying to do social events, as well as an electronic space for support. I was shocked there wasn’t an online community. It’s comforting to have people with you who know how you feel.
Do you find negative bias towards people with Huntington’s?
Here in Niagara Falls, my uncles are in wheelchairs. I see them around town all the town and people think they are drug addicts or they have a problem. I say, “No ,it’s Huntington’s disease, which causes them to have spasms and be in a wheelchair.” So yes, there is a lot of prejudgement.
What is usually the first sign you have Huntington’s?
It starts with a twitching, like Parkinson’s. Every time my arm shakes I’m fearful that it’s starting. It’s a little scary.
I would guess the one thing you would hope for is that someone could change your future.
They just started some testing on a drug that would stop the onset of Huntington’s. I’m hopeful that this could be a cure and they will have this in time for me to take it, but if it doesn’t, I mostly just care about making the community accessible and supportive to the needs in wheelchairs because people with Huntington’s are inevitably going to be in a wheelchair and need nursing services.
Does knowing you have this rare and fatal disease change your outlook on life?
People waste hours and days of their lives not doing what they want. They think they have an unlimited amount of time. At least I know I have 22 or more good years ahead of me. I’m going to take every vacation I want. I’m going to be as outspoken as I want. Nothing can stop me because I know when it will all come to an end. When someone says, “I hate Mondays,” I say, “I love Mondays. I’m thankful to be alive on a Monday.”
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