“Today we’re going to talk about the ‘Four P’s,’” Stefani says. “You’ve probably heard of these already, but let’s go through them anyway.”
I look at her the way a dog tilts its head when it hears a high-pitched whistle.
Kind of like this.
“No, I haven’t,” I say.
“You’re kidding,” she says, incredulously. “How long have you had MS?”
“I was diagnosed in 2013 but I think it went undiagnosed for many years before that,” I answer.
For the longest time I’ve had the nagging feeling that my MS team and plan have been missing something. This exchange only confirms my fear.
To put a finer point on it, while plenty of articles and resources recommended that I review my “treatment plan” with my “MS specialist,” up until this year I had no idea who my specialist was, and if I had a formal plan, it must have been top-secret because no one shared that with me.
Instead, my team consisted of isolated specialists and care and treatment and drugs with seemingly no eye on how I should actually live my life with a progressive disease like MS, both now and in the future.
Yes, the National Multiple Sclerosis Society and other resources have a lot of information and even people online that I can ask for help, referrals and guidance and I am incredibly grateful for all of these resources.
Helpful as they are, they can’t be with me within the healthcare my insurance allows me to have, can’t meet with the different doctors I see or knit together the plan that’s directly applicable to my unique flavor of MS.
Not long ago, I wrote about discovering that I was in charge of building the MS treatment and team around me and how I now planned on building.
Which is where Stefani comes in.
Stephanie is an occupational therapist I began seeing in early February.
Originally, I thought occupational therapy meant addressing work, or “occupational,” issues. Getting a better desk or desk chair or computer screen, things like that. I’m simple that way.
But the American Occupational Therapy Association, Inc., says it’s far more than that.
According to the Association’s website,“Occupational therapy practitioners ask, ‘What matters to you?’ not, ‘What’s the matter with you?’ In its simplest terms, occupational therapists and occupational therapy assistants help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations).”
Stefani has prepared a comprehensive 10 visit evaluation for me and today’s visit is all about energy conservation (and the previously mentioned “4P’s”: Prioritize, Plan, Pace and Position).
At first blush, these seem pretty straightforward and sort of um, simple, so they ought to be the perfect fit for me.
“You need to start developing more efficient ways of doing every day tasks so that you can save your energy to do the things you really want to do,” she says.
Though it’s not specifically focused on MS, Stefani gives me a handout that more thoroughly explains each of the “P’s” and we work our way through it.
Some of the recommendations are pretty straightforward and make immediate sense to me. Like when I’ve got multiple things I want to get done to prioritize them and do the most important task first to make sure it gets done. Planning not just my day, but also scrutinizing activities and tasks so I don’t waste trips or effort. To rest before I feel tired and to use pursed lip breathing in order to increase my oxygen intake and corresponding energy level.
Other suggestions, like sliding objects instead of lifting them or avoiding spray cleaners because they might irritate my lungs and disrupt my breathing (and energy level as result) seem, at least at first, a little impractical.
But the net effect of the visit — and frankly, occupational therapy’s role in my MS “plan” — is to more readily pinpoint where I am likely to face MS-related challenges throughout my daily life now, how to address those challenges and how to better prepare for the future.
In a disease that so often feels like an unsolvable puzzle, surely this must be one of the pieces.
This column originally appeared at Multiple Sclerosis News Today.