How I Shift Into ALS Manual Mode

Dagmar Munn avatar

by Dagmar Munn |

Share this article:

Share article via email
Banner for

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.

***

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.

Comments

Michel Pilon avatar

Michel Pilon

I'm also living with ALS, thank you for your wisdom how to deal with it.🙏

Reply
David Crellin avatar

David Crellin

Thanks Dagmar, I also have to lift my legs to cross them. As someone who ran 15 miles a day and then walked back to support my wife's 50th birthday extended week's party, without any training, and kayaked with her 60 miles in my 60th year, and cycled 150 miles fully laden to enjoy a holiday in the Scottish Hebrides in between the two, I'm now 'reduced' to off-road treks on my all-terrain mobility trike. But that's good enough. My 28yr old son, who carries the gene mutation I have, is planning to run 7 Munros a day for 7 days to raise funds for ALS research. What's a Munro? A Scottish mountain over 3,000 ft, many rising from sea level. I plan to summit his last mountain with him - it's in a ski area I skied in my teens. Am I mad? Of course. But life's short and it's not as mad as some things I've done - paragliding, motorcycling (too fast), ice climbing.
Life is for living.

Reply
Mark Reavis avatar

Mark Reavis

My onset is with my arms and right hand. Each week there’s something new that I can no longer do “the old way”. I’m going to start using your manual mode way of thinking. This morning I couldn’t raise my arms to blow my nose. My new manual mode is to place my hands on the counter and bend over to put my nose into the tissue. Which, I guess is similar to how I eat also. But just for a brief second, I was rather proud of myself for how quickly I solved another problem. Thanks Dagmar.

Reply
Betsy Coles avatar

Betsy Coles

R
ttThank you for your sharing and writings. My dear friend has ALS and I want to help her as much as I can. What kind of bathing chair is best? Info about remodeling the bathroom to have a roll in shower. What help is there from PT, She is resistant to having a session saying what can they do. The clinic where she was diagnosed is UVA medical Center in Charlottesville VA which is 2 hours from our town.

Reply
Dagmar Munn avatar

Dagmar Munn

Hello Betsy, perhaps my experiences with our bathroom remodel will be of help: https://alsandwellness.blogspot.com/2020/10/how-i-made-my-shower-safer.html
I would check with your OT and also your ALS Assoc. Care coordinator.
This may also be of help https://www.youralsguide.com/home-modifications.html

Trevor Bower avatar

Trevor Bower

Thanks for the column. I needed this column today.

Reply
Trevor Bower avatar

Trevor Bower

Thanks, I needed that wisdom today.

Reply
Nancy Hildenbrand avatar

Nancy Hildenbrand

You made me realize that since I was diagnosed with PLS, I’ve been in manual mode, making sure every movement is calculated and thought through. Coming up with ways to accomplish a simple movement is a challenge for my brain!😁😍

Reply
Dan Fortin PALS 1996 avatar

Dan Fortin PALS 1996

Enjoyed your column Dagmar! Great advice! When we don't use it, we lose it!

Reply
Karl Schachtner avatar

Karl Schachtner

Thank you Dagmar! Your posts are always so inciteful and helpful to me!

Reply
Mary Tiknis avatar

Mary Tiknis

Thank you Dagmar you are always an inspiration

Reply
Lisa Smith avatar

Lisa Smith

This is my first time reading this news and column. I retired in December, and recently was diagnosed with Bulbar onset ALS. My speech is slurred now; my voice cracks at times and I have trouble swallowing at times. Has anyone had these experiences? I am seeking speech therapy at present and trying to get info about how to stay as healthy as possible. Any suggestions will be appreciated.

Reply
Susana Rave avatar

Susana Rave

Thank you for sharing...40 squats!! Impressive. Grateful for your insight. I often think about an earlier post of yours where you mentioned that we (ALS patients) are in the slow lane.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.