A Relapse and a New Approach
At the 2 mile mark from his initial MS diagnosis, my partner Chris could sense something was off. His left arm hurt more often. He was getting tired and wobbly on walks more quickly. There was increased tingling and numbness in his fingers.
All of these coincided with some environmental factors which hard as it may be to believe, it took us months to even connect the dots. It was a very hot summer. Chris had started his own software development company and taken on a new contract. We were in the middle of maybe not the most complicated contentious home sale in the history of ever, but probably pretty close. I was not handling my new responsibilities at work with the greatest of ease, and I brought that anxiety home to Chris. At the tail end of all of this excitement, we had house guests for 8 weeks, as Chris’s parents visited him for the first time in 10 years. This was a joyous and welcome event, however it was at moments stressful and added some disruption and fatigue to Chris’s routine. Still, when medical director at the Centrastate MS Center Amos Katz, filling in for our regular neurologist, announced to us unceremoniously that Chris had experienced a relapse, we were very surprised. It sounds ridiculous now.
Part of me was relieved, because it didn’t seem as bad as what I imagined a relapse would look like. Then of course I remembered that Chris was experiencing it, and irrespective of his positive attitude and outward grace, I knew he was struggling. We needed a plan, and some hope that there was light at the end of this tunnel as well. So there was a certain comfort in Dr. Katz’s approach to this relapse. He was honest and direct, and did less asking us what we wanted to do, and more telling us what we should do. He immediately scheduled Chris to start Tysabri infusions.
Tysabri is a medication administered via a once monthly infusion which takes about 2 hours and takes place at the MS center. It sounded scary, but after we found that Chris tested negative for the JCV virus, and after our first experience with the infusion, and after reading up on how much more effective Tysabri is and how many people have experienced a new lease on life because of it, we were optimistic again. Chris tolerated his first infusion really well. The nurses at Centrastate are fantastic, kind and compassionate. The environment is warm and comfortable. Chris experienced no side effects, and while he is still scared and weakened by the relapse, it makes all the difference to have a plan, and a medical team behind him.
Shortly after Chris’s parents left, and we were calmer in the notion that this was happening because we were handling it, had finally sold our house, had spent a glorious week on the beach with family to recharge our batteries, we were feeling more solid. And like a breath of much needed fresh air from the mystical land of Australia, Chris’s big sister Rachel arrived on our doorstep to provide support, much needed comic relief, and a big helping of love. She listened, she helped out, she sat with Chris for his second infusion, and reminded us again that we were not doing this alone. It sounds strange, because Chris has a large circle of family and friends who love him. But the reality of Multiple Sclerosis makes the disease very socially isolating. Having Rachel here for 10 days was exactly was Chris needed, and we will always be grateful for it.