by Dennis Dalman
Julie Mrozek of Sauk Rapids knows all too well – through sadness and sorrow – the meaning of “one day at a time,” having had so many relatives suffer and then die of Lou Gehrig’s disease.
“There’s no cure,” she said. “You can’t fight it. You just have to accept it – one day at a time.”
Her mother, Pat Anderson of Rice, has been weakened by the dread disease, technically known as amyotrophic lateral sclerosis. It’s a disease of the nervous system that weakens muscles and impairs physical functioning. ALS was dubbed “Lou Gehrig’s” disease when the famed baseball player died of it. (See related story).
Mrozek is one of the organizers and participants in the annual Walk to Defeat ALS in St. Cloud, which raises money for research and personal-care services for the area chapter of the National ALS Association. The two-mile walk will take place at 10 a.m. Saturday, Sept. 12 at Lake George in St. Cloud, and everyone is welcome to attend, as walkers or supporters to cheer on walkers. Check-in time is 8:30-10 a.m.
Mrozek and others will walk with a team called “Claudes Celebrating Life,” so named because so many members of the Claude family have died of the disease and others – among them Mrozek’s mother – are still battling it.
Like a grim procession, ALS, which can be hereditary, seems to stalk Mrozek’s relatives – mainly the Claude and Barcklay families.
The first relative who died of it was Mrozek’s great-grandfather, Horatio Barcklay. The others who lost their battles were her cousin Pat Duchene, 44, of Sauk Centre, who died just last June; Mrozek’s aunt Carol Inderrieden of Rice (Mrozek’s mother’s sister), 58; Carol’s daughter Katie Inderrieden of Rice, 27; Mrozek’s uncle Carl Claude, in his 40s; her grandmother (Mrozek’s mother’s mother) Agnes Claude, 83; Agnes’s brothers Robert and Phil Barcklay and Agnes’s nephews Mike and Bill Barcklay.
Recently, a cousin, Bret Colgrove of Pillager was diagnosed with the early stages of ALS. Mrozek’s mother, Pat, was diagnosed with the disease in 2011. She is now in the later stages of the disease.
In her interview with the Newsleader, Mrozek kept emphasizing, “This is not about me; it’s about them (the ones who are suffering or who have died).”
She agreed, however, to discuss the disease because she wants others to learn about it and to donate in the hopes it might someday be eradicated.
“Mom loves family time, grandkids and get-togethers so we do a lot of those at her house in Rice,” Mrozek said. “She always loved to travel. She loved to bowl and she loved softball. And she enjoyed volunteering. She worked at the surgical center at St. Cloud Hospital, and she used to go on (medical-surgical) humanitarian trips to Guatemala to help the people there.”
Although Pat has been extremely weakened by the disease, her husband Einar, children and friends rally for her, trying to make her quality of life the best that it can be, day to day.
“With ALS,” Mrozek said, “the mind remains intact, but the body gives out. Some have described it as like being a prisoner in solitary confinement, and that’s why enhancing quality of life is so important.”
Because of the prevalence of ALS in their close family and relatives, Mrozek and others have developed a philosophical attitude to living, to dying.
She explained some people’s reactions vary. Some discuss it; some do not. Some, understandably, have a very hard time dealing with it when it strikes a loved one. All kinds of unsettling emotions surface: anger, denial, depression and more. There are, however, many brave and even positive reactions about dealing with the hard facts and making the most of a day.
“Sometimes it’s a case of mind over matter,” Mrozek said. “Gaining perspective is important, being brave and positive.”
ALS is so relentless, so inevitable once it starts that victims and loved ones can become overwhelmed by feelings of utter futility. That is why taking things a day at a time is so important, Mrozek said.
“We have to appreciate life and live in the moment,” she said. “And then we have to develop an acceptance, and that takes time. It’s so much easier said than done.”
Living with ALS is in many respects like a speeded-up life in which stages of life come quicker since many people die of it so relatively young.
“We have had to plan a lot of funerals,” Mrozek said of her family and her relatives. “We always feel as if we’re two steps behind. ALS speeds everything up.”
Disturbing, unpleasant questions arise: What stage is she/he at? When will it be time for a wheelchair? When will he/she be unable to breathe and need a ventilator?
“There’s no way to tell how fast the disease will progress,” Mrozek said. “It varies and is different in every person.”
To combat feelings of hopelessness and helplessness, Mrozek and many others put their energy into fighting back at the disease through fundraisers throughout each year. It’s a comfort because so much money raised goes directly to help ALS victims and their families with medical-care items they so badly need. There is also the hope that money raised for research might squelch the disease once and for all.
“We are one family, one cause – that’s our motto,” she said.
To donate to the Claudes Celebrating Life team, click on webmn.alsa.org, then scroll down to the photo of the girl with a balloon on her head and click on the red button that says “Find A Walk Near You,” then click on that. Scroll down and on the right choose “Find a Team.” In the box, type “CCL,” then click “Go.” Scroll down to “CCL – Claudes Celebrating Life. Click on that. Scroll down. You will see the names of members of the CCL team with a “Donate Now” after each name. Julie Mrozek’s name is number 20 on the list, but contributors can donate to any name they wish.
Another quicker way to donate (without designating a walking team) is to go to webmn.alsa.org and click the red “Donate” button to the right.
Yet another way is to write a check to “ALS” and send it to the ALS Association MN, ND, SD Chapter, 333 N. Washington Ave., Suite 105, Minneapolis, MN 55401. That chapter includes the central Minnesota area.
Julie Mrozek works in customer service at Continental Printing in east St. Cloud. She and her husband, Marc, have three children: Elena, 20; Ella, 8; and Marcus, 5. Mrozek said there is no danger of her immediate family members coming down with ALS.