Sharing wellness and motivation for persons living with ALS, MND (Amyotrophic Lateral Sclerosis also known as Lou Gehrig's disease) their caregivers, family and friends! Because - - You CAN be WELL while living with ALS.
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 those
long periods of sitting and the shallow breathing that goes along with all that
It all begins with a spirometry test
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 on my goal, 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
And a slumpy “C-curve” promotes shallow breathing, which
in turn lets our powerful rib muscles and diaphragm take a vacation - - unless
we’re using them, they weaken and atrophy.
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 excellent, short TEDxStanford video, Gokhale demonstrates “How to sit up
Deep breathing depends on both our lung capacity and
the strength of our torso muscles. Having a ribcage that expands, a flexible
spine, strong abdominal muscles and a supportive lower back all help to
create space for the lungs to expand. Inhalations are deep and healthy.
These 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 RESETS for nine years now, and I believe they have contributed to
my continued overall strength and mobility.
I also practice 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.”
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., has 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.
I made my own version and 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.
To use, take a deep breath and blow (exhale) for as long
as you safely can.
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!
My breathing better routine:
·I’m always aware of my posture: standing and
sitting. And ready to make adjustments as necessary to remain in ideal posture
(use pillows in low & upper back when sitting!)
·I practice daily diaphragmatic breathing (use
this helpful video) and exercises that strengthen my torso, abdominals and
·I blow bubbles! I do 8 slow exhalations counting
to “15” each time. Plus, 5 fast-as-I-can exhalations. Done every other day or
at least 3 times a week.