“If I were you two, I think I’d plan for the worst,” Amy, my physiatrist, said to my wife and me as we sat in the examination room.
It was just after 11 a.m. on Friday, Jan. 18.
January has become one of two pivotal months in terms of my MS treatment plan, including my first Ocrevus (ocrelizumab) infusion of the year, the first of my semiannual neurologist and physiatrist visits, and initial sessions with my physical therapist. I’ll do the entire 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 her, 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 Jr. 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 to reduce my trips up and down the stairs and to minimize accidents — of all kinds — along the way.
Neither of these solutions was 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.
We had shared our plans with Amy 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 and special introductory episodes of “bowel and bladder” issues). Aside from being unable to lift my right lower leg one summer afternoon, though, I hadn’t had any obvious flare-ups or exacerbations.
I was 53 at the time.