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Navigating MS Unpredictability Together

 
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Multiple Sclerosis  related image Jonathan Clark

Michael and Ronda Giangreco have a unique perspective on what it’s like to live with multiple sclerosis (MS). When they met in the 1990s, Michael, a newspaper publisher at the time, wanted to make sure Ronda understood what she was getting into. He had lost his mother to MS when he was a teenager and was then diagnosed himself with the disease in his early thirties. While Michael’s MS was mostly asymptomatic, he told Ronda that the disease could be unpredictable. But Michael’s diagnosis didn’t deter Ronda, and they were soon married.

Eight years later, Ronda woke up one morning to find the left side of her body completely numb. After multiple doctor visits over the next two months, she was diagnosed with late-onset MS. Where Ronda thought she would be Michael’s support partner someday in dealing with the symptoms of his MS, their roles were suddenly reversed.

We sat down to chat with Michael and learn more about his journey with Ronda, his role as both a person living with MS and as a support partner, and the experience he has gained about keeping their marriage strong.

EmpowHER: How did you feel when Ronda received her diagnosis?

Michael: For us, the path to diagnosis was winding. Ronda was misdiagnosed twice before doctors pinpointed MS as the cause of her symptoms. The news of her MS was tough for us to absorb, especially after having seen what my mother went through with this disease. Clearly there was a lot of irony here – how could it be that my mother had MS, I had MS and now my wife had it?

EmpowHER: How has Ronda’s diagnosis affected your life?

Michael:MS has led us to make some adjustments to our lifestyle, from bigger changes, including moving to a one-story house, to smaller daily adjustments, like ordering in dinner instead of cooking.

We do a lot of planning ahead, work together to minimize situations that could be tough for Ronda when she’s not feeling well, and think of ways to reduce stress and manage her fatigue. I consider myself a safety net for Ronda; for example, I always have a cane in the trunk of the car, ready for her if she might need it.

As a support partner, I often look back to how my father took care of my mother, especially once she was in a wheelchair and had difficulty with daily tasks such as feeding herself. He worked full time while helping my mother, and a lot of responsibilities fell on his shoulders. My father was an all-star and truly taught me the importance of taking care of your partner.

EmpowHER: Are there strategies you use to cope with the unpredictability of MS?

Michael:When it comes to managing the unpredictability of MS, clear communication is important. I ask Ronda to be incredibly honest with me about how she is feeling, and I try to always be honest in return. This allows us to work together to figure out if we need to change our plans. Sometimes that means going home, getting out of the sun or declining to have people over. Whatever it may be, honesty is terribly important in coping with the unpredictability of it all.

EmpowHER: Has MS impacted your social lives?

Michael:There were no “negatives” for us in terms of social life; in fact, the opposite was true. Specifically, right after Ronda’s diagnosis and the purchase of our new home, we had a long discussion about what we were going to do. We thought about the joy we could make in this home. Ronda remembered the way I would speak about how my mother always looked forward to weekly Italian feasts with our extended family. She decided she too would cook big dinners – every Sunday for one year. It was a big undertaking, but we were both up for the challenge, and it gave us a way to take back a bit of control from the disease. During that year, we ended up hosting more than 250 people around our table at 52 Sunday dinners.

EmpowHER: What did you think about Ronda’s quest to cook Italian feasts every Sunday for a year?

Michael:At first, I was worried, because I wondered if Ronda would be able to do this physically. It meant we were not going to take any vacations, and since there were going to be meals for up to eight people every Sunday, I wondered how much money we were going to spend. This was a huge investment, but we came to realize that it was an investment in friendship. And we had fun!

EmpowHER: Has MS made your marriage stronger in any ways?

Michael:Yes, it has. The unpredictability of MS is a huge challenge, but the disease is also a blessing in some ways. Ronda and I love to call MS a “blurse:” a combination blessing and curse. MS has encouraged Ronda and me to live for today, go on with our lives and not worry about what we think we should be doing.

I wouldn’t choose this, but it has made our marriage stronger. We never would have accomplished a year of dinners if we didn’t have the banner that we worked under, which was, ‘We are challenging MS together and are going to host dinners.’ It was a rallying cry for Ronda and me.

EmpowHER: What advice do you have for other couples managing MS?

Michael:First, I would say do the best you can to stay optimistic. While MS has certainly presented challenges, it has also helped us live more wholeheartedly.

Second, aim for open and honest communication with your partner – that’s a must.

Third, connect with others in the MS community. We draw a lot of hope and inspiration from the people with MS that we’ve gotten to know over the years.

EmpowHER: What do you want people to take away from your story?

Michael: I hope I can make some small difference in the battle against MS in whatever way I can, whether that means sharing advice and experiences to help others be good support partners to those living with MS or providing inspiration to someone else living with this disease.

Sponsored by: Genentech

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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.