I am on “house arrest.”
Let me explain.
Earlier this year, I wrote Large and In Charge: Building a Better MS Care Team, a column about my frustration with my “MS medical team,” my understanding (or lack thereof) of who was doing what for me, and my discovery that the only person in charge of that medical team was me.
I wrote the column in September, motivated by my then-sore right shoulder, the crazy weird nerve pain from my right elbow to hand, and the inability of multiple specialists to unravel what was behind these issues.
More broadly, it was about my decision to no longer mindlessly accept referrals to medical professionals who do not specifically have a focus on, or experience with, MS patients. Because, after years of not doing so, I discovered that there are economic incentives within the U.S. healthcare system that may work against the integrated care that MS demands. If I want better care, then it is up to me to knit these resources together into a team that works on my behalf — not the system’s.
I also wrote that I would share my progress as I built my new team.
The short-ish story is that I have met and discussed this process at length with Amy, the physiatrist I began seeing just after my diagnosis in 2013.
I’ve taken the time to learn more about what a physiatrist actually does, what role she may be best-suited to play. And I am about to do the same with my new neurologist, because in the haze and flurry of my diagnosis I’d neglected to do so.
In essence, I’ve promoted Amy to be my lead specialist, largely because there seems to be no new or active lesions in my brain or spine, only the unabated progression of physical symptoms, the kind that she is more qualified to deal with than my neurologist.
The “house arrest”?
That’s by order of Barb, the physical therapist to whom Amy referred me. Barb is a mid- to late-career professional who works solely with patients suffering from chronic neurologic diseases — including MS. And for the first time, we’re not working on rehabbing a knee or ankle or foot, but instead assessing all of my physical capacity and how to improve it.
And it’s not really house arrest; it’s more like I’ve lost most of my stair-climbing privileges. Barb says I am guilty of repeatedly breaking Newton’s Third Law, the one that states “for every action there is an equal and opposite reaction.”
In my case, foot drop and hip-flexor weakness have led to me hoisting myself up the stairs in our home, because I can no longer climb them properly. The force this hoisting requires has led to a torn rotator cuff in my right shoulder, a sore rotator cuff in my left shoulder. And as I wobble from side to side, because of my weak right knee and leg, there is compression of nerves in my arms, as I repeatedly press my forearms and shoulders into the wall for balance.
When I wrote the column back in September, I was being seen by my family doctor, two shoulder specialists, my physiatrist and my new neurologist. Though I explained to each how I climbed the stairs and how I had bruises all over my forearms, none of them seemed to understand how MS is changing the way I move or the problems that it can create.
Instead, the focus was on MRIs, EMGs, surgeries and deductibles, resulting in a “doom loop” (vicious cycle), in which one specialist suggested the problem was out of his purview before referring me to someone else. But no one was actually solving the problem.
Through years of experience, she understood how MSers like me move, how the laws of physics work and how they’re working against me (or vice versa). Thus, her edict that I limit myself to no more than five trips up and down the stairs each day to stem the pain and avoid further injuring myself.
I can’t — and won’t — recommend my approach to MS care team-building to anyone else.
But I am dedicated to finding the best treatment I can to keep moving, just like MS is. And, right now, it seems to be working far better than just blindly accepting a system that sometimes feels as if its long-term benefit is more important than mine.
And who knows? Maybe if I play my cards right and stay off the stairs, Barb will let me back on them for good behavior.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.