MS Through the Eyes of a Caregiver

It was a beautiful summer day. Kathy and I were at the very popular Mill Creek MetroParks walking trail in our hometown. I was riding my bike and Kathy was walking. When we met back at our starting point, Kathy said to me, “I’m walking like I had a stroke.” As one might imagine, her concern got my immediate attention. I put the bike aside, stood behind her, and said, “Go ahead and walk.” I couldn’t believe what I had just seen. Oh how I was hoping this would be the one time she had it wrong. Not to be. She was indeed walking as though she had a stroke. We went home and talked about minor issues that could be causing her “drop foot.” Maybe what she was experiencing was an anomaly and it would correct itself on its own. This was, unfortunately, wishful thinking. In the following days we talked a lot about what could be the problem. Of course, it was all layman speak. No tests to base our thoughts on about her drop foot. No doctor exams nor doctor’s theories. For about the next year and a half we watched and, quite frankly, prayed that her issue would simply go away. Most of the times Kathy was unable to pull her right leg into our vehicle. Either I or someone with us would do it for her. Her walking became quite unsteady. Her drop foot more pronounced. My arm became her “walker.” It was at this point that we realized her situation was getting worse. So, about 18 months after that troubling day at the walking trail we decided, together, to pursue an answer to Kathy’s physical problems. For the next six and a half years that’s exactly what we did. Doctor visits. Tests. More and different doctor visits. Sometimes the same tests and other times new tests. Sometimes we were presented with what it wasn’t and other times with what it could be. But, nothing ever definitive. In short, no answers to what was causing her right-side weakness, including her unsteadiness on her feet. One fall day I was sitting on our front porch looking over a brochure about a major teaching hospital not far from where we lived. It struck me that we should take advantage of this hospital and their exceptional doctors, especially since it was only about an hour away from our home. Kathy agreed and so we made an appointment with one of their neurologist. The first visit was impressively thorough. The doctor gathered a significant amount of information via questions, reviewed tests results we brought with us, and performed neurological tests on Kathy. We were both pleased with his approach to finding out what was causing her physical problems. Many blood tests later, another MRI, and a spinal tap and we finally had our answer. The phone rang and it was the neurologist Kathy had been seeing at the Clinic. She knew it couldn’t be good because he was calling from his car on a Saturday. He sent us to another part of the hospital to “confirm ” his diagnosis. We now had a diagnosis - Multiple Sclerosis. She was, unfortunately, diagnosed with the progressive form of this malady. In short, it meant that when she lost impairment she would not get it back like, for instance, those with the relapse-remission form of MS. Although our family’s journey with this disease had been going on for the past eight years, this official diagnosis continued our journey in a way none of us could have ever imagined. Kathy continued to work as an eighth grade teacher. It was a job she loved and, quite frankly, she was meant to be doing. For the next five years, and with the help of wonderful people at her school and a couple of very special guardian angels, she would continue working. One of her guardian angels would take Kathy’s car and park it so that she could pull closer to the building and not have to walk from the parking lot. She would even bring in Kathy’s books and purse for her. The disease progressed and Kathy had to use a rollator (walker) to move around the school. More progression and we purchased a wheelchair. At this point, I was taking her to school each morning and either I or someone else would bring her home after school because she was unable to drive. Then, following the 2012-2013 school year, she retired. She realized that given any type of emergency at the school the students would have to take care of her instead of vice versa. It was emotional for her. In fact, for several years afterwards, not a day went by that she didn’t think about teaching. Kathy was still able to pick herself up using a rollator. I would leave the portable potty next to her chair when I left for work. Two of our three children still lived with us so they contributed to her care when I was away from the house. Since she was becoming less mobile, our ability to go places was reduced considerably. And, when it was just her and I going outside the house, we were even more restricted because she was unable to get into the lady’s restroom on her own. Getting her to our bedroom on the second floor became a serious challenge. We considered getting a chair lift to carry her to our upstairs. But that wasn’t our only problem with this house. Once upstairs, I would clasp her arms and walk backwards with her to the bathroom swinging her side-to-side. It was a struggle, but doable. Getting her in the tub-shower was still another major problem. We had a shower chair for her to sit on and bathe, but it was getting her legs up and into the tub that was not easy. We finally decided to look for a ranch house. We were fortunate to find a development that is meant for aging-in-place residents very close to where we lived. The houses have many amenities that were exactly what we needed. For example, our new ranch house has a walk-in shower, a ramp in the garage, 36-inch doors, and a wide open floor plan. When we first moved to this residence, Kathy was able to walk up and down the ramp. Granted, it took her a significant amount of time to do either. Unfortunately, after a year or two, she was no longer able to walk on the ramp. The ramp is now used to get her and her wheelchair in and out of the house. Since moving to this house, I retired to be Kathy’s full-time caregiver. We have purchased a disability minivan with a ramp, an electric wheelchair, and a sit-to-stand lift. All of these purchases were made to help improve the quality of our lives, and they have. Kathy’s condition has indeed progressed. She can’t walk and can stand only if someone gets her up. The lower part of her body often burns to the touch. She sleeps in a lift chair, one of two we purchased. 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. She worries about much, especially falling. And, the handful of times she has wound up on the ground, I had to call for assistance from a family member to help get her up. The good news, however, is that her mind is very sharp. She uses her iPad and smart phone regularly. Shortly after Kathy was officially diagnosed with MS, our oldest daughter created a non-profit organization to educate people about MS and to raise funds for research. She also has become a national MS advocate for the MS Society. Ours has become a challenging but very rewarding life. We clearly laugh more now than we had 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.

MS has hit us hard. Unfortunately, our middle daughter was diagnosed with MS in 2014. Thankfully, she has the relapse-remission form of the disease. She takes medicine for her form of the disease, works full-time, watches what she eats, and regularly works out. To simply look at her, you would never know she has MS. So, what I know for sure regarding Kathy, is that the family’s presence and helping hands give her hope. She relies on us, especially me, to get her through the day. But 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, her immediate family. 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!”