Ask Ardra Anything: When Should I Use a Mobility Aid?

This month, we have two similar questions. Allie asks: How do I know when it’s time to start using a wheelchair? And Buffie, who has been using a combination rollator/transport chair, is contemplating a power wheelchair for upcoming travel. However, Buffie’s neurologist thinks it’s best for her to “stay upright, struggle to walk, but keep working [her] muscles.” She asks: I notice you don’t use [a power chair]. Would you mind sharing the reason?

There’s no one-size-fits-all advice about what to do when multiple sclerosis (MS) affects your mobility because everyone’s MS is different. Needs must be assessed on a case-by-case basis and then regularly re-assessed because MS is a moving target.

When it comes to figuring out when to introduce a mobility aid and which device to choose, the most important perspective is your own.

Many of us grew up with the false belief that, if someone is using a wheelchair, they must not be able to walk at all. And if you can’t walk, the decision to use a wheelchair often isn’t really a decision — it’s the obvious, black-and-white answer to the question, “How do I get from point A to point B?”

MS exists in more of a murky gray area, where a number of factors can influence mobility. Symptoms like weakness, fatigue, impaired balance, and spasticity might not make it impossible to walk, but they can make walking difficult, even dangerous.

Those of us who *can* walk, but have limited mobility — perhaps we can walk short distances, or can walk with assistance — have to make decisions about how safely, efficiently, and comfortably we want to move in the world.

It took broken bones, stitches, research on mobility aids, consultations with experts, trying out different devices, and overcoming stigma to finally figure out the best course of action for myself.

Buffie’s doctor’s concern about muscle strength is valid, but it doesn’t take into account all the quality of life factors that influence people’s decisions to use mobility aids — or that there are other ways to maintain muscle strength that might be more practical.

How do you know you need a mobility aid?

Maybe you’re wondering about your first mobility aid or you’re questioning the need to level up from, say, trekking poles to a rollator, or perhaps a transport chair to a full-sized wheelchair or even a motorized device.

People who don’t have to think about their walking, who don’t have to consider every step, don’t typically ask themselves these kinds of questions.

If you suspect you need a mobility aid, begin by asking yourself these questions:

• Am I falling frequently?
• Am I almost falling?
• Am I saying “no” to things because I feel unsafe?
• Am I saying “no” to things because I will run out of energy?
• Is my lower body weak?
• Am I satisfied with my ability to get from point A to point B safely and with a reasonable output of energy?

Answering “yes” to any of these questions is a valid reason to consider trying a mobility aid or upgrading your existing device.

How do you know which mobility aid to use?

Different types of mobility aids address different needs, and you might need more than one depending on what you’re doing or how you’re feeling.

I make mobility aid choices all day, every day. In my apartment, I typically choose my 3rd Foot Cane, which is designed to move in a heel-to-toe motion that mimics a natural human step.

On the same day, I might “surf” using the walls and furniture for support if I’m feeling strong, or use my rollator if I’m especially fatigued. If I’m headed to dinner at a local restaurant, I opt for my rollator that converts to a transport chair so that I can walk to dinner but get a push home from my dinner companion after I’ve had a glass (or two) of wine.

Understanding which device to use means listening to my body and appreciating that fatigue is a valid reason to use a mobility aid.

The hashtag #DifferentAidsForDifferentDays has been a helpful reminder that this is a healthy approach to managing my mobility when I bump up against misinformed attitudes from people who wonder, “If you can walk, why are you using a wheelchair?”

What to do when you’re not supported

Assessing mobility is complex. There may be a big difference between how you move through the world and what your doctor sees when you walk 25 feet between two pieces of masking tape on a level surface.

Mobility aids are not the specialty of neurologists. Ask for a referral to a physiatrist or a physical therapist for professional guidance.

I’d been using a cane for a while when I started to wonder if it was time for a rollator. I explained to my doctor that I would get stuck during outings that were previously manageable, that I would have to sit on a curb every block to recover, and that it would take me 10 times as long to get home. I told him how the experience was exhausting and distressing, and how I often felt stranded.

Yet, he still discouraged me from getting a rollator. This doctor thought it was acceptable for me to struggle every time I left the house. His intended message was “use it or lose it,” but the message I received was that a rollator would mean I was giving up and not trying hard enough.

People with MS are not rushing toward meeting new milestones in their disease progression. It takes courage to ask for support when mobility aids are so stigmatized.

Meanwhile, physician biases that encourage patients to push through fatigue and weakness to delay mobility aid use can reinforce objections from well-meaning but misguided friends and family.

People with MS are capable of understanding what our bodies need and of prioritizing our overall well-being.

MS is hard enough. It’s OK to not want to spend every ounce of energy staying upright. If your neurologist has concerns about how a mobility aid might negatively affect you, ask for a referral to a physical therapist who can design a rehabilitation plan that allows you to focus on building and retaining strength, independent of how you get from place to place.

The takeaway

It took time and considerable trial and error for me to figure out my mobility aid needs. Without someone to tell me it was time to start using a transport chair when I traveled, I spent hours in hotel rooms resting while the rest of my party was partying without me.

Worse still was when I would push through and be too fatigued to enjoy myself or suffer scraped knees and the occasional broken bone.

Like many, I erred on the side of either sitting things out or putting myself at risk rather than turning to mobility aids for support.

We need to rethink devices as tools that help us do more, not less. When I learned to embrace mobility aids, I actually increased my activity. Mobility aids allow me to pace myself and use my energy resources intelligently. I spend more time outdoors, more time with others, more time living.

Nobody knows what it feels like to be in your body. Living well with MS means doing whatever you need to survive and thrive, to keep going, to keep moving, in whatever ways are available to you.