How I Shift Into ALS Manual Mode

To help me get through the ups and downs of living with ALS, I’ve created several mental games. Perhaps they’ll help you, too. For example, when life around me isn’t cooperating, I imagine I’m in a driver’s ed training film. When my body isn’t following orders, I tell myself not to worry — I’ve simply shifted into manual mode.

Why?

Pre-ALS, my body moved with ease. I could perform yoga balances, master intricate tap-dancing steps, and take a relaxing swim in the pool. But 11 years of living with ALS have me feeling stiff and dealing with muscles that don’t always respond to my mental commands.

Moving used to be automatic — a magical split-second between imagining the action and having my arm or leg respond. Now, the messages sent from my brain out to my limbs are often garbled or so delayed that I created the mental image of living in the ALS slow lane, just to help me cope.

Those early ALS symptoms had me feeling both angry and fearful. It would have been easy to give up, curse my ALS, and dissolve into a puddle of tears. But instead, I created a brand-new mental game.

What is the manual mode?

Flashback to my college years when I owned a 1969 Volkswagen Beetle. Oh, how I enjoyed driving that little car. Everything on it was manual, from the stick-shift transmission to the hand brake to the handles that cranked the windows up and down. Nothing in that car turned on or moved without my direct involvement; I felt in complete control.

That memory became the inspiration: My ALS body and that Volkswagen were both objects that moved in manual mode.

Now when I sit in a chair and want to cross my legs, I have to do it by reaching down with my hands and lifting one leg over the other. If I’m practicing ankle circles, I need the help of my hands on my foot to push it around. Yep, just like rolling down the window in my VW “Bug.”

Are there any benefits?

Being in manual mode reinforces mindfulness. It makes me pay attention to what I’m doing and prevents my mind from wandering.

And then there’s the side benefit of honing my high-speed thinking. This comes in handy when shopping at Walmart and having to avoid product displays, carts, and running children.

Manual mode even helps me when I hoist myself onto the passenger seat of our van. You’d think I was a ninja-acrobat, but the creative use of the door frame and foot ledge is a shining example of my mindfulness and motivation.

What keeps me motivated? I follow the motto: You’ll never know if you don’t try. If I didn’t try, I would have never discovered how to accomplish 40 chair squats — by being willing to do just one.

We all experience a different ALS journey. Who knows how long I will be able to maintain my mobility? But I won’t give up. I’ll keep using fun mental games to keep my motivation high. I hope they help you, too.

Together, let’s learn to live well with ALS.

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