May marks National Multiple Sclerosis Awareness Month, and at the May 18 Nancy Davis Foundation annual Race to Erase Gala event, Emmy Award-winning actress Marg Helgenberger will serve as a celebrity champion and award presenter to actress Teri Garr, who lives with multiple sclerosis (MS). Sherri Snelling, our caregiving contributor, spoke to Marg, a 12-year star of TV’s drama series, “CSI,” about how she is stepping into the spotlight as a champion for those living with MS, a disease that claimed her father’s life.
In the 1980s, Marg was still a college co-ed at Northwestern University with a future full of promise when she got the call that her father , 45, had a devastating chronic illness.
“My dad was a young man when he was diagnosed with MS – he was so full of life and to see this disease overpower him in such a short time was really sad and devastating,” says Marg.
Marg, now 53, grew up in America’s heartland, a small Nebraska town where fields, farms, family and friends abounded. Her close-knit clan included an older sister, her younger brother and her parents. Her mom was a nurse and her dad, Hugh, owned a butcher shop. At first, her father attributed the tingling and numbness in his arm to a pinched nerve caused by his physically intensive job lugging sides of beef around and constantly chopping and cutting. However, as the symptoms progressed and persisted, he was eventually given the diagnosis of an extremely rare and progressive type of MS.
Multiple sclerosis is one of the numerous chronic illnesses for which there is still no cure, although according to the Nancy Davis Foundation recent research is encouraging. Today, more than 400,000 people in the U.S. and 2.5 million people worldwide live with this insidious disease that attacks the central nervous system. Essentially, myelin, the protective covering for the nerve fibers in the central nervous system, becomes inflamed or damaged and through this inflammation becomes scarred. These scars interfere with the transmission of signals to the brain and spinal cord, leading to unpredictable and often debilitating symptoms that numbness or tingling in the extremities to periods of blindness and even full paralysis.
Twice as many women as men are diagnosed with MS, and it is typically uncovered when patients are 20 to 50 years old. While researchers feel there may be genetic predictors for MS, there is no clear connection that one generation passes it to another. In fact, research has not shown any significant findings on how and why certain people are afflicted with MS. What they do know is that no two people experience MS in the same way – some patients may experience some or most of the symptoms and may have periods of full recovery. It is progressive and degenerative; it isn’t curable.
Most patients fall into one of four categories: 1) Relapsing/Remitting (the most common with 85 percent of MS patients in this category where you have flare-ups with periods of remission); 2) Primary/Progressive (continuous worsening of the disease with no flare-ups or remissions); 3) Secondary/Progressive (begins as relapsing/remitting but if untreated becomes primary/progressive); and 4) Progressive/Relapsing (the most rare with continuous decline and increasingly intense flare-ups). Marg’s father had Progressive/Relapsing MS.
And that wasn’t the only challenge facing her family. Just a year before her father was diagnosed, her mom was found to have breast cancer and underwent a double mastectomy. Now just a year later, the family was hit by the news of her dad’s disease. In the 1980s they did not have the therapies and medications for MS that they do today. Marg remembers going with her mom and dad to the hospital where he would get corticosteroid shots that would leave him relieved from some of the pain but bloated, unable to sleep and miserable.
It was during this period that Marg decided she wanted to pursue an acting career and the Big Apple was where she had to be. She says she felt guilty over not staying in Nebraska to help her mom care for her dad. So often, family members in Marg’s position give up their dreams. But, Marg’s parents were supportive of their daughter and encouraged the pursuit of her passion.
As Marg’s career took off, she landed a key role on the TV soap opera, “Ryan’s Hope,” and began appearing on popular primetime TV shows like “Spencer for Hire” and “China Beach.” Meanwhile her dad’s symptoms continued to worsen. He quickly became wheelchair-bound and could no longer work. Since her mom had to continue her job as a nurse to make ends meet, her father was often home alone. One day his wheelchair got jammed as he tried to get around a hallway corner and he was stuck there for hours. That is when the family hired a professional health care worker to provide home care for Marg’s dad while her mom was at work. With money tight, Marg, her mother and her brother formed a caregiving tag team with her mom and brother performing the physical care and Marg providing a lot of the financial resources.
It was during this period that Marg said she really appreciated her small town, rural America upbringing. The head of the local Jaycees (also known as the United States Junior Chamber), a civic group, contacted Marg and said they wanted to hold a fundraiser to to buy a wheelchair-equipped van for her dad and family. “It really struck me as so sweet and that there is such a power of community when someone is in need,” says Marg.
It was this experience that planted the seed of inspiration in Marg to become a champion to help others. While her acting career continued to soar with roles in TV (“Perfect Murder,” “Perfect Town,” “The Tommyknockers”) and films (“Erin Brockovich,” “Mr. Brooks”), she also became a passionate advocate for breast cancer awareness and fundraising, hosting an annual golf tournament in her home state to fund breast cancer treatments and research at the local Omaha hospital.
She told me that “not a day goes by that I don’t think about my dad,” and now her advocacy is bringing more awareness to finding a cure for MS.
“While I am so proud of the progress made in breast cancer treatments and the small role I could play in helping people, multiple sclerosis just doesn’t get the kind of attention as other diseases, so I want to shine a spotlight on this disease which is so devastating for families,” says Marg.
Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.