A Journey of Hope

It was a beautiful summer day. I was riding my bike and my wife, Kathy, was walking. When we met back at our starting point, she said to me, “I’m walking like I had a stroke.” I put the bike aside, stood behind her and asked her to show me what she meant.

For the next six and a half years, we pursued an answer for Kathy’s “drop foot” and other worsening symptoms. Countless doctor visits, tests, and poking and prodding. Sometimes we were presented with what it wasn’t, and other times with what it could be. But, nothing ever definitive.

One fall day I was looking over a brochure about a major teaching hospital not too far from where we lived. It struck me that we should take advantage of this hospital and their exceptional doctors. Kathy agreed, so we made an appointment with one of their neurologists.

Many blood tests, another MRI and a spinal tap later, we finally had our answer.

The phone rang, and we knew it couldn’t be good because the neurologist was calling us on a Saturday. He referred us to another part of the hospital to “confirm” his diagnosis. Shortly after, we had a diagnosis—multiple sclerosis. She was unfortunately diagnosed with the progressive form of this malady.

Although our family’s journey with this disease had been going on for eight years at that point, the official diagnosis continued our journey in a way none of us could have ever imagined.

Kathy continued to work as an eighth grade teacher, but as the disease progressed, she had to use a walker. With further progression, we purchased a wheelchair. In 2013, she retired. She realized that given any type of emergency at the school, the students would have to take care of her instead of the other way around. It was emotional for her. In fact, for several years after, not a day went by that she didn’t think about teaching.

Eventually, I retired to be Kathy’s full-time caregiver. Kathy’s condition has indeed progressed. She can’t walk and can only stand if someone gets her up. The lower part of her body often burns to the touch. She sleeps in a lift chair. Her movements are slow. She is right-handed, but uses her left hand regularly, especially to eat. Getting from point A to point B is essentially impossible unless someone moves her. We go out much less these days.

Our lives have become challenging, but somehow, very rewarding. We clearly laugh more now than we did in the past. Our family knows that Kathy’s well-being–this spouse, mother, and mother-in-law–depends on all of us helping her. It is not easy, and there are many, many frustrating moments. The good news is that through it all, we are surviving.
 
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Me and my beautiful family.
 
MS has hit us hard. But what I know for sure is that the family’s presence and helping hands give Kathy hope. She relies on us, especially me, to get her through the day. It is through and with us that she is able to navigate life.

Truth be told, MS has gotten the best of her and, at times, us. However, as I often say when people ask how she is doing: “Not as good as some people, but a heck of a lot better than others.”
Tags Caregiving, Progressive MS      6 Appreciate this
Ed

Ed Villella

A former college professor for 36 years, Ed retired in 2015 to take care of his wife, Kathy, who has progressive MS. Ed and Kathy live in northeast Ohio and have been married for 44 years with 3 (now grown) children.