Fighting Back: Shelley Peterman Schwarz's Refusal to Let MS Win

Jan. 25, 2011 - PRLog -- “I have a 3 year-old son, a 5 year-old daughter and a 10 year-old marriage. What’s going to happen now?”  

These words went through Shelley Peterman Schwarz’s mind after the neurologist looked at her and said matter-of-factly, “you have either multiple sclerosis (MS) or a brain tumor.”  Shelley had sought help after physical problems she couldn’t identify worried her. “Back then,” she said, “there was nothing definitive about how to diagnose MS, but ultimately that’s what the doctors decided upon, and indeed that’s what it was.” It was 1979; Shelley’s 33rd birthday was just days away.

Struck with primary progressive MS, the disease hit Shelley hard, and her condition worsened daily.  “As I became disabled, my family became caregivers.  As I lost my physical abilities, little things like not being able to lift a regular glass any longer — and having to use a lightweight glass with a straw was terribly upsetting,” she said. “I felt as though my body was dying; I felt this was it. I had no control!”

But Shelley did not give up. As a writer and teacher, she was curious — and determined to fight her attacker. “Having to give up my job and go on full disability, I had time to concentrate on figuring out ways to stop its relentless progression,” she said. “Some of the treatments I tried produced debilitating side effects and were as bad as the disease itself.”

She participated in a National Institutes of Health study, underwent chemotherapy, steroids, hyperbaric oxygen, bee stings and a visit to a psychic nutritionist. “I was desperate, but nothing worked, and I kept getting worse.”

Then one Sunday evening she saw a report on ’60 Minutes’ that got her attention. The report indicated the adverse reactions some were having to mercury amalgam-based tooth fillings, once commonly used by dentists. “My friends thought me crazy, but I had all my old silver fillings removed.”  Her decline stabilized and life with MS became easier. “I figured that if you know what the rules are, it’s easier to play the game.”

Even though many years have passed since hearing the physician’s devastating statement, Shelley hasn’t given up on further improving her quality of life.  Now a full time Amigo™ scooter user, she’s learned to adapt, but not accept everything thrown at her.

About a year ago, “three women, whose opinions I respect, suggested a new supplement to me.  It was called Prevagen® and was being made and sold by a company located here in Madison (Wisconsin) where I live.”  Shelley, who is on the board of trustees of the Wisconsin National Multiple Sclerosis Society, and who writes articles for periodicals dedicated to the disease, inquired further. “I’ve known one of these women for over 40 years, and she thought it would be a good idea for me to call the company and speak with someone in charge to find out more.”

Shelley made the call, and was directed to company president Mark Underwood. “After interacting with Mark, I decided to try the supplement,” she added. “In three weeks I noticed I was sleeping better.  I felt more alert, and didn’t want to climb into bed as soon as the sun went down like I usually do. And when I played mental games on the computer I noticed my scores really climbing!”  Shelley’s eye-hand coordination improved and her writing speed picked up. “I can even write now at night, and I couldn’t do that before.”  

Shelley could now touch each finger to the thumb of her right hand, and once again could handle a knife and fork — a simple act that had been denied her for years. “And my husband is taking Prevagen, and it’s helping him too.”

But Shelley didn’t wave any flags. “Even though Prevagen works for me, I’m not one to try to convert people; I’m not a good pitchman,” she said. “I will recommend something I believe in, but won’t push it on others.”

Like many strong-willed people, Shelley Schwarz feels she is a better person as a result of her illness.  “I have more patience, am more accepting of others, and can see the goodness in people while realizing their limitations.  I may need help getting in and out of bed and the shower, but I can put on my own makeup and sign my own MasterCard,” she says proudly.

Her disease has had a lasting positive effect on her two children. “It’s been an amazing journey for them,” she says. “Both my son and daughter have a special affinity for others — especially those in need. They’ve grown to become resilient, capable adults, and seem to center on what’s really important in life.”  

Even her grandchildren are not afraid to ask questions of those with disabilities.  “Grandma,” her little granddaughter asked the other day, “why don’t your legs work?”

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