Navigating Hybrid Mobility with NMOSD

Living with NMOSD means learning to exist in a body that doesn’t follow consistent rules. For many of us that means adopting a ‘hybrid’ approach to mobility; using a variety of mobility aids to make the most of life. Personally, I sometimes walk around indoors at home. It’s safe, familiar, there are few distractions, and it only requires short bursts of energy to get from room to room. For short distances outside I’ll use one or two crutches. If I’m heading out with friends, however, I’ll opt for my wheelchair so I can keep up and go further, without having to worry so much about weakness, pain, and fatigue.

Understanding fluctuating mobility and the hybrid approach

To people on the outside, my hybrid approach can look contradictory. But mobility isn’t all or nothing. As with many other conditions, mobility in people with NMOSD fluctuates. Perhaps it changes day-to-day, week-to-week, or your mobility aid needs could be activity specific. When we’re managing our mobility, it’s helpful to consider not just what we’re able to do in the moment, but what we can sustain without causing ourselves harm.

Why do some people use a wheelchair if they can walk?

I’ve been asked this question directly by able-bodied family, friends, and even strangers. I’ve asked myself this multiple times while still picking apart my internalized ableism. And I’ve felt people questioning me with looks when I’ve stood up from my wheelchair to get something from a shelf in a supermarket. The answer is simple: my wheelchair is my freedom.

Prior to using my wheelchair, my world became incredibly small. I was limited by the number of steps I could take. I found myself turning down invites and opportunities because I knew I wouldn’t be able to stand for long enough or walk far enough. Either that or I’d push myself to do too much, worsen my symptoms, and risk falls.

Using my wheelchair helps me participate in a full and exciting life without harming myself in the process.

Overcoming ambulatory wheelchair stigma

One of the most challenging things about being an ambulatory wheelchair user is the stigma, and that sometimes comes from other disabled people too. When I use a wheelchair I am perceived as “legitimately” disabled. When I’m then seen standing or walking that perception can shift instantly. Do people think I’m exaggerating, or even faking, my disability?

This in-between status can make me feel as though I don’t quite belong anywhere. I’m not “fully disabled”, yet I’m not able-bodied either.

Living in that grey area can feel lonely, but the truth is that many of us with NMOSD live in this grey area, as do people with other health conditions. I have lots of friends with varying disabilities, and while there may be people who are quick to judge and exclude me because of mine, there is a brilliant community of disabled people who are welcoming and accepting. I found many of my disabled friends online and through adaptive sports. Our disabilities range from complete high-level spinal cord injuries through to conditions like M.E and EDS.

The important thing is that we have shared interests and life experiences, yet we’re open to learning about our differences too.

There’s no right or wrong in this disability grey area. You have the freedom to figure out what works for you and how best to implement it.

How to choose the right mobility aid for your needs

• Walking sticks/canes: Great when you need some support with walking or taking pressure off problem joints. They’re a good middle ground when walking is doable, but not exactly comfortable. Use one or two depending on the support you need that day.
• Crutches: Many people find elbow crutches offer a higher level of weight-bearing support than a walking stick or cane. They’re also useful if your balance has decided to take the day off.
• Walker/rollator: These provide even more stability, and often come with brakes, seats for resting, and bags or storage pouches for carrying all of your things. A solid option when walking feels wobbly and rest breaks are non-negotiable.
• Manual wheelchair (+power attachment): Ideal for distances that you could walk, but would absolutely regret. Also great if you’ll be somewhere that would otherwise require a lot of standing. Using a manual wheelchair independently over long distances or hilly terrain can use a lot of upper body strength and can wipe you out faster than you’d expect. You could opt to have someone assist you, or you could look at power attachments if you’d rather move around independently.
• Powered wheelchair: A good option if you have arm weakness, or you just don’t fancy exhausting yourself to get from A to B. They are bulkier and harder to transport than a manual chair and power attachment, but often more comfortable and better suited to uneven terrain.

Why dynamic disability requires a personalized approach

Choosing to use a variety of mobility aids as and when you need them is an act of independence, not the loss of it. It’s worth getting proper advice from a health professional so you’re not just guessing and hoping for the best. Making sure mobility aids are the correct fit makes a huge difference in the benefit they offer you, this isn’t something you want to wing.

And if anybody questions why you were using crutches yesterday and a power chair today, own your truth. Disability is dynamic; the way you live with it should be too.