Copyright 2004 St. Louis Post-Dispatch, Inc.
St. Louis Post-Dispatch (Missouri)
May 25, 2004 Tuesday Five Star Late Lift Edition
SECTION: ST. CHARLES COUNTY POST; Pg. 1
LENGTH: 833 words
BYLINE: Esther Talbot Fenning/ Special To The Post-Dispatch

"I want to do everything I possibly can in the time I have left," says Victoria Wolff of O'Fallon. "I feel that this didn't catch God off guard."

ALS, commonly known as Lou Gehrig's disease, weakens muscles, leads to complete paralysis and is often fatal within a few years of diagnosis. Victoria Wolff of O'Fallon proves that amyotrophic lateral sclerosis doesn't affect the mind, the spirit or the determination to make the most of one's talents.

Wolff, 47, of O'Fallon, was diagnosed with the progressively debilitating disease two years ago. From the beginning she has remained active. Both Wolff and her husband, Phil Wolff, are members of an ALS support group. She has coordinated an e-mail network of members, contributed articles on ALS to her chapter of the Muscular Dystrophy Association and is enrolled in a clinical trial of a potential drug treatment at the MDA/ALS Center at the Washington University School of Medicine.

She has opened her home for those in the support group who want to research disabled-accessible living. She scrapbooks as a hobby and enjoys hand-writing cards and letters to friends. She is on the verge of starting a novel based on a relative's life.

"I want to do everything I possibly can in the time I have left," she said. "I feel that this didn't catch God off guard. He knew I would not just get through it and live but get through it and live."

Earlier this month, Wolff was given Missouri's MDA Personal Achievement Award for this year. MDA President and CEO Robert Ross said of Wolff: "Her achievements exemplify the talents and abilities of people with neuromuscular diseases across the country and the important contributions they're making to their families, professions and communities."

Wolff said her symptoms took two years for doctors to diagnose. It began with a foot that dragged. It became progressively worse before she was diagnosed at the Washington University Medical Research Center.

Wolff uses the pronoun "we" when she talks about her disease. It's appropriate, she said, because in a sense both she and her husband have ALS.

"I may be the one dying, but his life has changed, too. He is working full time, helping me with chores and making difficult decisions," she said. "We both have a strong family in our support group."

The impact of the prognosis of ALS didn't hit the couple until they attended a support group meeting and discovered the different degrees to which ALS affects patients.

"Reality set in after the first meeting," she explained. "Some couldn't speak or hold their heads up. Some people get it in the throat and can't speak for years. Some have problems walking at an early stage, and others may never have mobility problems. We were scared, but we went back and found that the people who had it the worst were the most encouraging."

Wolff uses a wheelchair for mobility and requires some assistance from her husband with regard to personal hygiene, cooking and cleaning. Nevertheless she remains relatively independent and is grateful that her right hand remains strong. She explained that ALS affects the muscles of the lungs yet her breathing has been affected minimally.

She is constantly thinking of ways to help her fellow ALS sufferers - even at funerals.

"I had the opportunity to go to the rest room at the funeral home, and it occurred to me that when I pass away or any of our friends pass away and everyone is there, we need more handicapped facilities," she said.

The Wolffs have been married 28 years and have three grown children. They grew up together in Hazelwood and married after high school. Phil Wolff is a senior estimator at Boeing Co. She is a former sales and project manager for a textiles company in Earth City.

Wolff is now eligible to become the recipient of the MDA's 2005 National Personal Achievement Award. The honoree will be announced on the Jerry Lewis MDA Telethon on Sept. 5-6. She was excited about visiting with Gov. Bob Holden last month when he designated May as ALS Month in Missouri, and she is thrilled about the possibility of meeting Jerry Lewis.

Wolff said that the attention the award had brought her had given her the opportunity to help herself and others to survive the devastating effects of ALS.

"There is a reason for everything, and I'm not bitter," she said. "Actually it's been kind of a fun ride."