Tuesday , September 23, 2014 - 12:00 AM
LAYTON -- While vacationing in Hawaii over 30 years ago, Donna Willard began noticing herself drifting off the sidewalk and onto the grass while walking.
At the time, she thought it was strange, but wasn't overly concerned. Then she got home and went for a walk with her friend.
"My balance was off, but I kept walking," she said. "Around this same time as I joined my exercise class, I realized hopping was no longer an option. I could not hop from one side to the next without completely losing my balance."
More symptoms arose over the next several years. After a series of tests, Willard was diagnosed with ataxia, a condition involving a lack of muscle control when walking or performing other voluntary movements. The condition can affect movement, coordination, speech, eye movement and swallowing.
"People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected," said Willard's daughter, Nancy Willard. "Typically balance and coordination are affected first."
Donna, who is now 78, also watched her mother suffer with ataxia. Three of her children and a grandson have also been diagnosed.
"This has been so heart breaking and difficult for me to know they too have the hereditary ataxia gene," she said. "Both my sisters and one of their children also have this same type of ataxia known as SCA7."
Jenny Willard Durrant, 35, is one of Donna's daughters with the disease.
"After I had my last daughter in 2009, I wasn’t moving quite normally. My walking and standing gait were becoming wider and the speed was becoming slower," Durrant said. "I couldn’t go up and down stairs without holding onto the railing, my balance was off and I was quickly losing my confidence to walk around others."
She also had very bad vision, which at the time didn’t know if it was related to ataxia.
"At that time my oldest sister, brother, nephew and cousins along with my mom and aunts had ataxia and that number is likely to increase," she said.
Although Durrant has improved with intense therapy, she still struggles.
"Ataxia is always with me, with every movement. I often think, 'How can I be a good mother, when I can’t drive, walk down the street or even kick a ball?' Most everything is hard for me. I've lost writing skills, have slurred speech and choke among my other symptoms," she said.
Another member of the family, Janet Bair, also has ataxia as well as one of her daughters.
"My legs don't work well, I'm unable to walk and my hands shake," she said. "My husband showers me, cooks and feeds me."
Bair said she deals with the disease through exercise and speech therapy.
"This disease is depressing, but I learn to live with it," she said.
Ataxia affects an estimated 150,000 Americans and half a million people worldwide, according to the National Ataxia Foundation. SCA7 is passed from generation to generation and will continue to do so unless genetic testing is done and more research is funded. As of right now, the disease has affected four generations in the Willard family. There is also no cure at this time.
There are support groups, however. Nancy, who got heavily involved with the Utah Ataxia Support Group, said there are currently 80 members on the roster. Meetings are held quarterly at the Moran Eye Center in Salt Lake City. The meetings include experts who talk about research, physical and occupational therapy and tools to help make living with ataxia easier.
On Saturday, the group will hold its first annual Walk-N-Roll at Layton Commons Park, 437 N. Wasatch Drive, from 11 a.m. to 2 p.m. The 1K walk is free, but with a donation of $20 or more, you will receive a T-shirt. There will also be a silent auction, face painting, kid games for $1 each and snacks.
For information about the disease, support group and funding, go to utahataxia.org or ataxia.org.
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