As the timekeeper signals all onlookers to be silent, our athlete draws in a
deep breath, then while slowly exhaling, counts out loud from one to 10. She
successfully completes the task using just that single breath of air, causing
the onlookers to cheer “Hurrah!”
But this event isn’t being held in a grand arena. Rather, it’s being
conducted in a small patient exam room being used for today’s ALS clinic.
I am the competitor, and the onlookers are my doctor, speech therapist, and
husband.
Imagining that my ALS clinic is a mini-Olympic competition is one of the
many mind games I create to help me cope with my ALS. Let me tell you why, and
how this helps me, and perhaps it can help you, too.
Why use an ALS clinic?
ALS clinics are an efficient way to provide care for an ALS patient. In my
case, in a span of three hours, I see my neurologist, speech therapist,
physical therapist, respiratory therapist, dietitian, and sometimes more. And
the best part is I stay in the same room while they all come to me!
But even though I go with a positive attitude, ask questions, and receive good advice, after 11 years
of attending these clinics, I realize there’s only so much advice everyone can
give me. So, rather than let the whole experience become a disappointment, I’ve
decided to turn it around.
I thought why not take advantage of having all those clinicians and their
testing equipment in one room? Why not use them to help validate my at-home
exercise and practice sessions? This way, every few months, I can see if I’m
maintaining my “routines,” or if I need to tweak them.
How I ‘train’
Most ALS patients come to know all too well the various tests conducted at
their own clinics. At mine, these include assessing muscle strength by pushing
against resistance and testing my ability to pull. There are also measurements
of my ability to speak clearly, cough, and breathe deeply. I finish up in the
hallway outside the exam room to demonstrate how I can safely walk with my
rollator.
At home, although I follow a well-rounded gentle exercise plan, I’ll admit
to adding in a few extras to help me train
to the test.
For example, knee pushups done on our bed mattress help me keep my arm
strength. Over the years, I’ve been able to increase from a shaky one to a
daily count of eight.
Then there are my breathing and speaking regimens, from blowing bubbles to joining various online
voice studies. Instead of walking in circles through the house, I step
onto my rebounder and walk in place to peppy music.
What about the tough times?
Sure, there are times when my ALS symptoms cause a low score at the ALS
clinic. Just like the Olympic and Paralympic athletes, I experience challenges
and setbacks. But that’s when I draw inspiration and strength from their
dedication to a goal. I adjust my attitude, tweak my plan, and start all over
again.
And I remind myself that I’ve already proved that progress can be made one
step at a time by being willing to “do just one.”
My mini-Olympic ALS clinic is a lesson in visualization, which
entails using my imagination to picture the challenges ahead and to see a
positive situation. It’s what top athletes do to focus before a competition,
and what I do to help me each and every day.
Join my team! Together we can learn to live well while we live with ALS.
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| Dagmar Munn ALS and Wellness Blog |
Visualize. focus, and execute.
Anonymous
A version of this post first appeared as my column on the ALS News Today website.
Thank you for the positive experience of an ALS Clinic visit…but I think it’s also important to mention that you are also a pALS who has the advantage of Riluzole med support. Mine was limb onset, left foot drop, and I tried Riluzole right away at diagnosis, but had awful side effects & had to stop after 8 weeks of trying all kinds of adjustments to tolerate it. So to with Radicava; but no one tries to figure out why. Just stop taking & move on as best can. So, despite nearly continuous PT & home exercise, lost ability to walk & stand now…about 3 years from onset of symptoms. I do go to a good ALS Clinic every 3 months; I can still breathe, talk & eat fine (although our breathing tests are machine use—and I can do better with your method!). I do ask lots of questions and learn something, but internally, things still happen and keep that ALSFRS-R score decreasing. Tough sledding, but still trying.
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