MAY 29, 2018

IN COLUMNS, LIVING WELL WITH ALS – A COLUMN BY DAGMAR MUNN.

I know I have no control over how quickly or slowly my ALS progresses, but I can try to hold off the negative effects that come from long periods of sitting and shallow breathing.

Because most people with ALS experience breathing difficulties somewhere along the course of their disease, a spirometry test is among the battery of tests given to patients at an ALS clinic. This test measures how much air you can inhale and exhale, along with how fast you can empty the air out of your lungs. The now familiar verbal instructions go something like this:

Sit up straight. Take a deep breath in. Then, exhale as hard as you can and keep going for as long as you can.

During one of my initial visits to my ALS clinic, I asked for advice on what I could do at home to exercise my lungs and ensure that I continue to do well on the spirometry test.

“Practice blowing up balloons,” they said. My respiratory therapist explained that the exertion needed to blow up a balloon would help keep my diaphragm muscle strong.

At home, with a newly purchased bag of party balloons, I sat down for my first training session. Unfortunately, it was a dismal failure; blowing as hard as I could, I just couldn’t muster the extra “oomph” of air needed to fully inflate a balloon.

But rather than give up, I approached the problem differently. The same way I’ve handled the many other issues that ALS brings: I break the problem down and tackle it one thing at a time. Following are a few of the resources that helped me to learn how to keep my spirometry scores high.

Sit up straight

A good friend recommended I check out the books and videos from Esther Gokhale. Since then, Gokhale has become my go-to authority on posture.

Not only is too much sitting bad for our health, slumping and slouching in our chairs contributes to weakened muscles and shallow breathing. Most posture experts describe a healthy spine as having an “S-curve.” According to Gokhale, most of us have slouched our way into a “C-curve.”

A proper sitting position involves scooting the hips all the way to the back of the chair. Knees can fall open, and our back is resting and supported by the back of the chair. Gokhale advocates the sitting (and standing) posture found in primal cultures in which the spine assumes a “J-curve.” In this short TEDxStanford video, Gokhale demonstrates how to sit up straight.

I spend my sitting time mindful of my posture and use strategically placed pillows to help prevent slouching.

Take a deep breath in

Deep breathing depends on both our lung capacity and the strength of our torso muscles. A ribcage that expands, a flexible spine, strong abdominal muscles, and a supportive lower back all help to create space for lungs to expand.

I practice the simple exercise sequence taught by Original Strength, called Resets. These include deep diaphragmatic breathing, head nods, rolling, rocking, and crawling.

The easy-to-do movements are performed on the floor “baby-style,” but they can be adapted easily for sitting in a chair or lying on a bed mattress. I’ve been doing these for eight years now, and I feel they have contributed to my continued overall strength and mobility.

I also use a tip I picked up from voice and speech expert Andrea Caban. In her “Living Speech Series,” a course for ALS patients, she recommends doing the following when taking a spirometry test:

Don’t take a deep breath by lifting your shoulders up to your ears. Keep your shoulders relaxed and down. Focus instead on expanding the lower lungs and moving the rib cage out sideways.

Exhale as hard as you can, for as long as you can

Thanks to the worldwide community of PALS (people with ALS) and CALS (caregivers for people with ALS) who post questions and freely share tips on social media, I found an alternative to blowing up balloons.

It’s a simple setup that Lee Millard, a fellow blogger from the U.K., uses for his home practice to help strengthen his diaphragm muscle. In this post, he writes about how he inserts flexible tubing into a plastic bottle that is three-quarters full of water.

To use, take a deep breath and blow for as long as you safely can. I have to agree with Lee, that blowing bubbles is not only fun but provides visual feedback as to the strength and length of each exhale.

At a recent ALS clinic visit, the staff noted my ease in breathing and the strength of my voice. On the way out, I stopped to say hello to a couple I knew in the exam room next to mine. They laughingly shared that the clinic staff had already told them about “Dagmar’s bubble bottle,” and had recommended it to them as well!

Blow bubbles for health! Together we can learn from each other, and together we can live well while living with ALS.