A new wheelchair means making adjustments mentally and physically

I’ve been busy learning how to drive! No, not a four-wheeled automobile — it’s a six-wheeled power wheelchair. Although I continue to rely on a rollator to help me walk inside the house and a mobility scooter when I’m out and about, getting the power wheelchair was a strategic, planning-ahead decision.

I live with ALS, and while I take life one day at a time, I also have to think about the future me. Because with ALS, predictability is never a sure thing.

The compact, black power wheelchair with silver trim became a permanent resident in our house a few weeks ago. Ever since it arrived, I’ve been devoting about 30 minutes a day to slowly navigating furniture, squeezing through doorways, and practicing going in reverse. My hand-eye coordination is getting quite a workout, too. It’s an adjustment for me to stare straight ahead while relying on a small toggle mechanism under the fingers of my right hand to maneuver the chair.

Beyond the physical practice, I’ve also had to make a lot of adjustments in my mind, particularly, reaccepting that I have ALS.

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March 24, 2020 Columns by Dagmar Munn

My Strategy for Facing Change: Adapt, Learn, Survive

A reality check

I know full well that I have ALS. But having slow disease progression and living with the condition for 16 years has lulled me into a comfortable “new normal.” I remember the shock of my diagnosis, that first year of denial, and then finally coming to terms with the fact that my life had changed forever. New patterns of life emerged, accommodations were made, and my caregiver husband and I settled into a daily routine that served our situation perfectly.

But now, seeing that power wheelchair sitting in the corner of our living room has become a stark reminder of more changes yet to come.

When it first arrived, I surprised myself by letting a flood of runaway thoughts rush in. I imagined worst-case scenarios and a slew of what-if questions, such as, “What if my legs stop working entirely and I have to spend all my days in the chair? Who would dress me? How would I get to the toilet? Would I even be able to do simple things like brushing my teeth?” Knowing that my husband certainly couldn’t manage all of this alone, I began spending far too much time devising intricate, hypothetical schedules for paid caregivers.

Setting new goals

Even those of us who advocate for a calm, rational approach to change can get thrown off course. I had to stop and remind myself that life never stays the same. Everything shifts. I either had to accept the change, adapt, and move on, or fight it and give up.

Following my own advice, I decided to channel my anxiety into proactive preparation. So I’ll be spending the next few months decluttering the areas where I’ve let too much stuff accumulate.

For example, on my worktable, several stacks of unused spiral notebooks crowd the space where my laptop sits. In the bathroom, old makeup bottles and nearly empty jars of cream need to go. In my closet, my goal is creating total ease of access.

I want accessibility for myself right now, but also for the inevitable time when someone else will be dressing me. When that day comes, I want their choices to be limited to my favorite clothes — not the unexplainable, outdated pieces that no longer fit.

My new attitude is this: A power wheelchair is simply one more way I can maintain my independence, and I’m grateful to have the gift of time to practice using it. Plus, decluttering my living areas is good for everyone — especially my future self and my future caregivers.

Join me in accepting change, adapting, and choosing to live well, no matter what. 

Note: ALS 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.