“If I were you two, I think I’d plan for the worst,” Amy, my physiatrist, said to my wife and I as we all sat in the examination room.
It was just after 11 a.m., Friday, January the 18th.
January has become one of two pivotal months in terms of my MS treatment plan, and now includes my first Ocrevus infusion of the year, the first of my semi-annual neurologist and physiatrist visits and initial sessions with my physical therapist. I’ll do the whole circuit again in June.
My wife doesn’t typically accompany me on these appointments, but Amy had relocated to another city, too far away for me to be comfortable driving myself. The two had never met, and since Amy plays a pivotal role on my MS team, I thought it would be good for them to meet. Plus, the following Monday was Martin Luther King Day, and we were looking forward to a four-day weekend together.
We had just finished telling Amy what we were planning to do to better accommodate my progressing symptoms, including buying a bigger vehicle to hold and carry the rigid-body, self-propelled wheelchair Amy had ordered for me. After months of drawing up plans and meeting with contractors, we were finally ready to pull the trigger on adding a half-bathroom to the main level of our old home in order to reduce my trips up and down the stairs and to minimize accidents — of all kinds — along the way.
Neither of these solutions were inexpensive, but it keeps getting harder for me to walk, I fell a lot more last year and the stairs in our home seem to be growing in number and somehow keep getting taller, too.
We had shared our plans with her hoping for validation or direction. She diplomatically recommended a mobility van or vehicle, while adding that if we were going to renovate our home, we should add a full bath and bedroom to the ground floor of the house. She just wanted us to invest our time, effort and money effectively, she said, and that our initial fixes might be short-lived at best.
Her recommendations were wildly more expensive than what we had envisioned. It was NOT what we expected to hear.
Like so many MSers, my diagnosis in 2013 came after years of seemingly disconnected problems followed by a couple of textbook signs of MS (foot drop, special introductory episodes of “bowel and bladder” issues). Outside of being unable to lift my right lower leg one summer afternoon, though, I hadn’t had any obvious flareups or exacerbations.
I was 53 at the time.
Initially my neurologist thought I had relapsing-remitting (RRMS) MS. I asked him the standard list of questions trying to get some — any — kind of grasp of what was going to happen to me next and when. He was always positive and reassuring, yet always somewhat evasive when answering my questions.
Anxious to end my anxiety, I spent more than a little time researching disease outcomes for RRMS patients. In my mind they appeared to be potentially significant but possibly not as disabling as the progressive forms. My symptoms were comparatively mild, my neurologist obtuse-yet-positive. Much of what I read about the disease stressed maintaining a positive attitude, too.
I began to think that I might get lucky and avoid significant progression, that my symptoms might plateau, possibly even end altogether, and that mine might be a relatively benign experience.
At the time that seemed “positive” to me and my wife and I continued trying to live our new MS lives the best we could. We didn’t have a plan for doing that, or know where to turn for help, and in the sturm und drang of the disease, we just kept going without one.
My symptoms continued to worsen. By late 2016, it was apparent I had the primary progressive (PPMS) form of the disease. Given my age at onset and the types of symptoms I had, it made perfect sense.
In 2017 I made Amy the captain of my MS healthcare team. Straightforward and funny, she was the first MS-related doctor I connected with. I knew she was devoted to helping me anyway she could and I knew she would tell it like it is.
Until recently, I’ve found the unpredictability of MS, how it develops, how it progresses — or doesn’t — maddening. I’ve learned why it was impossible for my neurologist, or anyone else, to predict my ever evolving MS. I’ve also come to realize that uncertainty can’t be easy for doctors to explain to their patients and how hard it must be for them to help their patients remain upbeat at the same time.
But that doesn’t change the need to make some very challenging life decisions. Unsettling as it was, we needed to hear what Amy said that morning. To be honest it gave me a sense of relief. Because for the first time since I was diagnosed, I finally have a better sense of what to expect.
This column originally appeared in Multiple Sclerosis News Today