Shelley Peterman Schwartz’s MS story, in two parts
Part 1: Your Grandkids Need the Truth
It was 1979 and Shelley Peterman Schwarz’s 33rd birthday was days away. Her doctor had just told her she had primary progressive multiple sclerosis, or MS. Her condition worsened, as did her ability to cope.
A writer, teacher and communicator, Shelley did not give up. She fought back, and through discovery, trial, error, patience and love from family, she was able to halt the progression of her MS. Today she helps educate people about MS and raises funds for a cure.
Her disease had a lasting and encouraging effect on her two children. Relating to them helped form a philosophy that has trickled down to her grandchildren.
“When conversing with a grandchild, speak to them at a level they can understand,” Shelley offered. “When one of ours asked why my legs ‘didn’t work,’ I was truthful, saying that when I was younger I came down with a serious disease, and as a result my legs ‘stopped working.’
“In their innocence, a child can be very direct, and your reply should not only be truthful, but positive and unemotional. If asked if you’re ‘going to die,’ you’ll know what to say and how to say it. You want understanding, but not sadness or tears in response to your answers.”
“Be upbeat, and conclude with a hopeful message,” Shelley adds, “engaging the child further by accentuating the positive. I said to my grandchild, ‘You know, grandma helps raise money to fight this disease I have, because we want to help doctors find the answer, so one day others can be cured.’
“Children can exhibit tremendous insight at a very young age and can absorb meaning at remarkably high levels. When I told our young granddaughter about the MS HOPE Trials I was involved in, her interest grew, and she began asking more questions!
“Grandparents need to model appropriate and trustworthy behavior. You teach a child…to confide in those close to them, and not hold it in. It helps them build proper perspective as they learn.”
Part 2: Shelley Peterman Schwarz’s MS Story from the Beginning . . .
“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, and 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 that was being made 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 the company president “After interacting with him, 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 the supplement, and it’s helping him too.”
But Shelley didn’t wave any flags. “Even though the supplement 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?”