Support Hotline: (866) 737-5999 info@multiplesystematrophy.org
An Enduring Spirit in the Face of Disease

An Enduring Spirit in the Face of Disease

Discovering new ways to enjoy nature

For Jackie Vandenberg, the initial signs of Multiple System Atrophy were subtle. Her gait was off at times, and her balance was sometimes off as well. She spoke to her doctor about it but says, “They were very vague symptoms that didn’t give him much to go on.”

As the symptoms increased, Jackie’s primary care doctor eventually referred her to a neurologist. As is often the case, she was misdiagnosed as having Parkinson’s disease. Unlike many, however, the neurologist corrected his diagnosis to Multiple System Atrophy during Jackie’s second appointment. Her extremely low blood pressure was the tip-off.

MSACantTake-spirit-FBAs there is no cure yet, the disease has progressed, taking away many of the things Jackie used to enjoy most. “I rode a Harley Davidson for 10 years, and I can’t do that anymore,” she says. “I live in upstate New York where there’s a lot of great hiking. I can’t do that anywhere near the way I used to. I miss cross-country skiing.”

Tom Humenick, Jackie’s caregiver, says they have worked around Jackie’s condition to find other things they can enjoy. “Multiple System Atrophy can’t take away our appreciation of nature,” says Tom. “Jackie used to love hiking through the woods. Now we find places with accessible trails. We were on one the other day while vacationing in the Northern Cascades that was just beautiful.” Jackie adds that “This disease can’t rob us of our spirit and the fun that we actually still have. We just love to laugh, and Multiple System Atrophy can’t take that away from us.”

Tom suggests that Multiple System Atrophy also can’t take away friends and an appreciation of life. “Some of Jackie’s close friends have really stepped up a lot in helping her,” he says. “Some have drifted away, and that’s fine, too. With the true friends who remain and with each other, there is more sense of urgency for appreciating each day. We never say, ‘We won’t do that today; we’ll do it some other time.’ We do it today.” Says Jackie: “That appreciation of every day has spread to our friends as well.”

In addition to Jackie’s daughter, their friends and each other, the couple is grateful for the MSA Coalition. “Speaking as a caregiver,” says Tom, “the support the MSA Coalition offers – the wealth of information, the volunteer-staffed hotlines I can call, the webinars they produce – has really helped me to be effective.”

Jackie sees overall value in the human connections the MSA Coalition provides. “The conferences give me the opportunity to meet others who have this disease. If not for the MSA Coalition, not only would I not meet others who have the disease, I might never meet anyone who has even heard of it.”

That, says Jackie, points to a major challenge in the fight against Multiple System Atrophy. “Part of the MSA Coalition’s mission is to inform doctors, and it is just so important that doctors learn about this disease,” she says. “Multiple System Atrophy is far too often misdiagnosed. There are probably many people out there who have it and don’t know it. That keeps them from getting the wonderful support Tom and I have received.”

To learn more about Multiple System Atrophy, The MSA Coalition’s efforts to battle this rare disorder and how you can help, please visit www.multiplesystematrophy.org.

To learn more about how you can support The MSA Coalition’s efforts to battle this rare disorder and donate now, please visit The MSA Coalition’s CtowdRise Holiday Challenge fundraising page.