Team Hope Walk supports Huntington's research

Parkinson's disease dismantles a person's nervous system, causing tremors, slow or rigid movements, speech changes and the loss of automatic movements such as blinking.

Lou Gehrig's disease, or ALS, steals a person's movement, eventually taking away the ability to speak, eat and even breathe.

Alzheimer's disease snatches away a person's mind — both the memories and the connection to the present day.

And Huntington's disease is like having all three at once, caregivers say.

Huntington's disease attacks nerve cells in the brain. It causes personality changes, forgetfulness, unsteady or involuntary movements, and difficulty speaking and swallowing. And then it gets worse.

As symptoms intensify, walking becomes impossible and choking becomes a constant danger. While a person with Huntington's continues to recognize friends and family and understand what's happening around him, he can no longer contribute to the conversation.

Huntington's patients become prisoners in their own failing bodies.

Charlotte Rybarczyk of Rolling Meadows has seen it happen over and over in her family. Huntington's is handed down from parents to children, with each child having a 50 percent chance of developing the disease. Huntington's took her grandfather, her mother and her sister. It threatens her nieces and nephews.

In their honor, Rybarczyk will join the Team Hope Walk on Sunday, May 22, in Naperville to support the Huntington's Disease Society of America's efforts to fund research into treatments. Today, she tells us more about her motivation to defeat Huntington's.

Charlotte Rybarczyk

This year I will participate in the 12th annual Team Hope Walk to benefit the Huntington's disease Society of America, as I have for the past 11 years.

Two years ago, I took the predictive test for Huntington's disease. I was fortunate and received negative test results for inheriting the gene that causes the disease. So why, now that I and my children are no longer at risk for HD, do I continue to walk? There are many reasons that keep me going to the walk year after year.

I walk in memory of a grandfather I never met, a mother and a sister whom I miss everyday, and the five aunts and uncles I have lost to a horrible disease that takes your mind and body. This disease is truly a family disease.

Huntington's disease could be described as a combination of ALS, Alzheimer's and Parkinson's all rolled into one. It is also hereditary, passing from one generation to the next.

I have watched family members lose their abilities to speak, walk, eat and think. I also have seen the strength with which they have fought to maintain their dignity through it all.

I walk for my nephews. They are my sister's children and they remain “at risk,” not knowing whether they have inherited the gene that took their mother's life. My sister died of HD nearly five years ago and I promised I would always look after them.

They each have a 50-50 chance of inheriting the gene. I have always loved them like my own children and, now that they are adults, I watch as they struggle with decisions to take the predictive test or not and what the results might mean to their lives.

I walk for all of the HD friends I have made along this journey; those I have met at support groups and those I work with on the Illinois Chapter Board of the Huntington's Disease Society of America.

I walk for those friends currently caring for a loved one at home. I walk for those friends who have had to make the difficult choice of placing their loved one in a health care facility. I walk for those at risk, not knowing whether or not their fate will be the same as that of the parent they now care for.

I also walk because I am thankful. Some may call it “survivor guilt,” but I know I am truly blessed to have dodged this particular bullet. I walk because I want to see the day that none of my friends or family has to worry about HD in their lives. I walk because I will not walk away.

If you would like to participate in the Team Hope Walk or make a donation, you can visit our website at hdsa.org/il.

If you go

What: 12th annual Team Hope Walk

Why: Proceeds benefit the Huntington's Disease Society of America

When: 10:30 a.m. Sunday, May 22; check-in from 9:30 to 10:30 a.m.

Where: Riverwalk Grand Pavilion, west of Centennial Beach, 500 W. Jackson Ave., Naperville

Cost: $20 in advance; $25 at the event

Info: hdsa.org/thwnaperville