Ask Noelle Wojciechowski about her favorite places in her family’s North Side Chicago home, and the 11-year-old might peer toward the kitchen.
Writer Jeff Mezydlo knows about
living with MS as a famiy. His wife, Vicki, was diagnosed just
months after they got engaged 12 years ago. Read about his
That’s where she enjoys baking with her dad, Dave. Word is their raspberry pies are to die for.
Spending time in the kitchen has become a special, almost therapeutic, time for the pair.
In 1992, Dave Wojciechowski was diagnosed with multiple sclerosis, a chronic, often disabling disease that attacks the central nervous system. Fatigue and balance issues at times prevent him from riding a bike or going for a walk with Noelle. Instead, baking and swimming have provided important father-daughter bonding time.
Having a parent with health issues could be overwhelming for some children, but MS has always been a part of Noelle’s family life.
“I’m lucky to have an inspiration like that,” she says.
Declan Loftus, a 14-year-old in Glen Ellyn, whose mother Angela has been living with MS since January 2004, feels the same way.
And even though 6-year-old Andrea and 5-year-old Victoria Taddei are too young to grasp the nature of the disease their father, Bert, has been living with since February 2008, they will soon learn just how much of a support system they are.
Taddei, Loftus and Wojciechowski are just three of about 400,000 Americans and 2.5 million people worldwide living with MS. They are not allowing this frustrating disease with no cure to control their lives or their family.
“I’d like to think I lead as normal life as I can,” says the 40-year-old Taddei, a salesman from Northbrook.
The road of uncertainty
Prior to being diagnosed, Angela Loftus and Bert Taddei knew nothing about MS, which is an autoimmune disease without a definitive cause, according to the National Multiple Sclerosis Society. MS results when the immune system attacks the myelin, protective insulation surrounding nerve fibers of the brain, spinal cord and optic nerves. Most people diagnosed are between 20 and 50.
“I remember being in denial,” says Loftus, 47, who works as a supply chain manager. “I didn’t want to know anything about it. I had a bit of a Superwoman complex at the time.”
While MS is not fatal, those living with it face limitations. Symptoms can be as mild as numbness in the limbs or as severe as paralysis or vision loss.
Loftus, Taddei and Wojciechowski may all, at times, need a cane or wheelchair to get by, but two-thirds of those living with MS remain able to walk unassisted.
“I go along and try to do the best I can,” says Wojciechowski, 49, a financial systems analyst and former basketball player at Valparaiso University. “Some days are harder than others.”
While that is a challenge, more frustrating is how the disease progresses, with the severity remaining unpredictable and varying from person to person.
Wojciechowski, Loftus and Taddei have experienced various bouts of double vision or optic neuritis, as well as numbness and balance issues.
They agree that MS also has an uncanny way of zapping a person’s strength to the point that getting out of bed or walking up a flight of stairs becomes a chore.
Heat is the enemy, and being exposed to too much of it can knock out a person living with MS faster than a right hook from Mike Tyson.
Injectable, disease-modifying drugs help slow the progression of the disease. Steroids and even chemotherapy are used to treat exacerbations-attacks that last at least 24 hours and are separate from previous exacerbations by at least 30 days. Some attacks can linger for several days or months.
A system of support
Being surrounded by supportive people is a vital component to living successfully with MS.
Loftus didn’t realize how much she would miss Declan when he attended the MS Youth Camp last summer in Minnesota.
The camp provided a perfect haven for Declan to meet other kids, like Noelle, who are part of families living with MS, but his mom felt a void without her little caregiver.
“I didn’t realize how much I really rely on him, not just to do things for me, but just for emotional support,” she says.
Whether it’s getting her a glass of water or simply asking how she is doing, Loftus doesn’t have to look far for someone to lend a hand.
“I have a great group of family and friends who won’t let me wallow,” says Loftus, who cherishes time spent helping Declan with his homework or cheering on the Chicago Blackhawks with him and her husband, Jim.
Noelle and her mom, Liz, say Wojciechowski has never felt sorry for himself, even when times are very tough.
“You have this thing and you can’t let it take over,” says Wojciechowski, whose mother died of complications from a rare severe case of MS.
Taddei credits the unconditional support of his wife, Diana, for helping him enjoy a life that includes playing the guitar and taking his daughters to the park.
Like many in the same boat, Angela Loftus, Dave Wojciechowski and Bert Taddei are faced with an uncertain, and sometimes, frustrating challenge. However, they are tackling MS head on.
“It’s certainly something that’s not going to stifle our zest for life,” Taddei says.