Originally published in "The Daily Standard Celina"
Written By: MARGIE WUEBKER

Heather Schmidt sits in an easy chair near the Christmas tree reading a story to sons Brenden and Aidan. Her voice rises and falls melodiously, but the words are slurred. The tale ends and the youngsters scramble from her lap. She rises slowly intending to head to the computer room but spots an ornament teetering precariously on an upper branch. Brenden, the older of the two, looks up and sees his mother stagger. He rushes to her aid with comforting words and a supportive arm until her dizziness passes. "I get so tired of people looking at me and assuming I am drunk," the 33-year-old woman says. "That couldn't be further from the truth because the problem lays in my brain and not in a bottle of Jack (Daniels)."

The bothersome symptoms appeared during her first pregnancy and she assumed they were related to her condition. However, they continued four months after Brenden's birth. She sought the help of eight to nine neurologists throughout Ohio and Indiana and underwent "nasty" diagnostic procedures. One doctor attributed her problems to multiple sclerosis, another to Parkinson's Disease. Others literally threw up their hands and voiced uncertainty about the cause or the treatment.

Schmidt likens the experience to a wild roller coaster ride with all sorts of gut-wrenching twists and turns. More than one professional dismissed her as neurotic, but a specialist at the University of Michigan finally attributed her problem to ataxia, a group of rare neurological disorders.

MRI studies detected shrinkage of the second largest area of the brain known as the cerebellum. Tongue-twister names Olivopontocerebellar Atrophy (OPCA) and idiopathic cerebellar degeneration ‹ describe the disorder that affects 0.02 percent of the population. It targets the cerebellum that controls speech and coordination. The doctor, who is known for his work in the area of ataxia, pulled no punches. The condition is progressive and there is no cure for the disease that can be sporadic or hereditary in nature. Autopsy remains the only sure path to definitive diagnosis. Schmidt, who clings steadfastly to a sense of humor, quickly informed the specialist she was not ready for such a procedure any time soon.

"OK, we can send a man to the moon and bring him home safely," she says with a sigh. "Why can't we find a cure for ataxia? I want to know whether my case is hereditary for my sons' sake. The signs point to that even though there is no history in past generations."

Admitting her symptoms have progressed over the course of seven years, Schmidt is determined to remain independent as long as possible.

"Doing everyday tasks takes so much energy," she admits reluctantly. "Sometimes it's like trying to run underwater. You try and try but you don't get very far." She describes her hands as useless paperweights, making writing difficult and tying shoe strings or buttoning her sons' shirts downright impossible. Thank heaven for preprinted address labels, Velcro and zippers.

"My body no longer does what I want it to do," she says. "So I have to make concessions."

Those concessions include sitting on a chair while doing kitchen chores, reaching for a supportive hand when leaving the front porch, pecking out correspondence on the computer and placing a handicapped parking sign in the car window. "You should see the evil eye people give me when I pull into a handicapped parking place," she says. "I now have a cane so that should indicate the presence of physical problems."

The latest problems to surface involve swallowing and muscle spasms. Even though she chews everything carefully and sips beverages slowly, coughing and choking spells occur frequently. She fears muscle spasms may lead to tremors in the future. There have been instances during recent exercise sessions when her arms and legs locked up momentarily. Her ability to focus has been compromised, although family and friends know the importance of patience as she handles things in a roundabout way. Even Brenden and 3-year-old Aidan realize that part of mommy's brain does not work right. "The truth is I am scatterbrained," Schmidt says matter of factly. "Sometimes you have to laugh to keep from crying."

The couple are prepared for the future. They moved three years ago to a Maple Street home equipped with wide doorways and spacious hallways capable of accomodating a wheelchair.

"From everything I read, I know death is inevitable within 20 years or so, not from ataxia itself but from some other complication," she says. "I do not dwell on that because I could walk across the street and get hit by a truck tomorrow. No one knows what the future holds. All I want is time to watch my sons grow up and time to spend with my husband Kevin."

The calm acceptance did not come easily. She worked through days filled with anger and loneliness. Having one person to talk to about dealing with ataxia became an obsession. She discovered an OPCA chat room and support forum containing 350 registered users from throughout the world earlier this year. Being able to talk to others who deal with similar challenges has made all the difference. "We are all walking in the same shoes," she says. "Hearing all their stories has made me realize how fortuante I am. My symptoms are progressing more slowly and that gives me hope ‹ hope for a lot more tomorrows."