By Jen Bakken
The life-altering diagnosis of Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s Disease, is devastating and could send some into a deep depression, but not Jill Hunz.
Just over six years ago, this Rockford Township woman learned her future was uncertain, but rather than give up hope, she decided to live for today and do what she could to help raise awareness for ALS.
After the diagnosis of an incurable disease, such as ALS, many may be overcome with worry, but not Hunz she put herself full force into a new hobby quilting.
“I started taking classes and quilting right after my diagnosis,” Hunz said. “I always wanted to quilt and didn’t want to put it off anymore.”
According to the ALS Association Minnesota Chapter, Lou Gehrig first brought national and international attention to ALS in 1939 when he abruptly retired from baseball after being diagnosed. Gehrig lost his battle with ALS in 1941.
ALS is a neurodegenerative disease that usually attacks both upper and lower motor neurons and causes degeneration throughout the brain and spinal cord.
A common first symptom is a painless weakness in a hand, foot, arm, or leg, and for Hunz, it began in one of her toes and her ankle.
“I think I’d had symptoms for years,” she said. “When my ankle quit working, at first, I thought I was just clumsy, but then I got the diagnosis, and most people only live two to five years after finding out.”
Six and one-half years later, Hunz is still living with ALS, but many things have changed for her. About two years ago, she lost the ability to walk on her own, and voluntarily gave up her driver’s license just over a year ago.
She has very limited use of her hands, and needs help with daily living tasks such as cooking, dressing, and bathing. A motorized wheelchair enables her to move around her home. In her lap, she keeps the TV remote, telephone, and a drinking glass with a straw.
A group called Share the Care helps Hunz with her needs on a volunteer basis, and even give her rides to doctor appointments.
“It’s so nice to have this group because otherwise there is no transportation for me,” she said. “This makes it so my husband can keep working.”
Though she is no longer able to quilt, some friends helped her complete unfinished quilts, and encouraged her to showcase them.
“I thought it was a fun idea,” she said. “But, I wanted to include ALS awareness somehow.”
Hunz’s quilt exhibit and ALS awareness event was hosted at Patchwork Alley Quilt and Decor Shoppe in Buffalo Oct. 14.
Eleven quilts created by Hunz, including a quilt that has several 6-inch blocks with more than 122 pieces each, were on display.
A table runner was auctioned off, and kits to make the table runner have been sold to raise much needed funds for the ALS Association.
Hunz may be unable to quilt now but she had enough time to make three baby quilts for future grandchildren, which she gave to her children, Jocelyn (Hunz) Craig and Tyler Hunz.
“It kept me busy,” she said. “And, I wanted to make quilts for my family to remember me by.”
Within the past six months, she has started to lose her speech, and recently began using a computerized communication device.
A simple dot attached to her forehead works as the computer’s wireless mouse and enables her to use many functions without the use of her hands.
For the past four years, Hunz has been involved with the ALS Association, Minnesota Chapter, doing what she can to promote awareness, and was involved in getting the ALS Registry Act passed.
The ALS Registry Act will establish the first ever national patient registry of people with ALS to be administered by the Centers for Disease Control and Prevention.
The registry will collect information leading to the cause, treatment and cure of this deadly disease.
“Jill’s come to Washington DC with us for National ALS Advocacy Day,” said Susan Spalding, Executive Director of the ALS Association, Minnesota Chapter. “She is an inspiration. She’s been a wonderful advocate for ALS. Sometimes when you are diagnosed with a devastating disease, you feel like there’s nothing you can do, but she never gave up and it’s people like her who make a difference.
“I was so impressed with her quilting. She took on a new challenge at a difficult time. Our hope is that someday we will have a cure for ALS but until then we try and do what we can to help those with this isolating disease.”
After living in Maple Plain for 15 years, Hunz and her husband, Mike, moved to Rockford Township where they have lived for seven years now.
The couple’s 15-year-old son, Tyler, still lives at home and their daughter lives in Shakopee with her husband and daughter.
“My mother’s experiences with ALS and the challenges it has brought have taught me to live every day like it is your last,” said Jocelyn Craig.
“It has taught me to enjoy everything that life has to offer, but most of all it has taught me that everyone has a disability in one way or another. We all need each other in this world, and there are some people that you can count on no matter what. Those people are your true family.
“My mother is a woman full of spirit, hope, and love. She is not dying of ALS but doing as much as she can to live fully with the disease.”
For more information about ALS or to find out how you can help, visit the ALS Association web site at www.alsa.org.