I Just Received a Diagnosis of ALS. What Now?

Sometimes the simplest things can help us the most. That’s what I learned in the months right after I received a diagnosis of ALS. Like most newly diagnosed ALS patients, I felt overwhelmed trying to find out what ALS was, not really wanting to know, and just wishing it would all go away. At the time, my biggest question was, “What can I do right now?”

A decade ago, there were far fewer resources for us patients, and fortunately, that has changed. Yet still today, I haven’t seen anything addressing my big, important question of what to do right now.

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Left to forge ahead on my own, I relied on a three-step technique I taught students years ago in my wellness and mind-body health classes. It’s simple, powerful, and helped me clear my thoughts. Here’s how you can do it, too:

Just 3 steps

First, simply breathe in.

Why? Because most of us hold our breath, all the time. Exhale and breathe in again, but a little more slowly this time. And slowly exhale.

Now that I have your attention, step number two is to ask yourself, “How do I feel?”

Listen to what your body is telling you. Perhaps you feel stiffness from sitting in one position too long. Or maybe you’re thirsty, hungry, or too cold or hot?

Also, notice what your mind was busy doing. Were you stuck in the ALS waiting room, caught in thought loops or imagining all the worst-case scenarios of ALS? Slowly breathe in again and exhale.

The third step is to ask, “What do I need?” This should help you come up with simple, quick, and logical solutions that are most appropriate.

Stiff? Shift to a more comfortable sitting position or even do a stretch or two. Thirsty? Get a drink of water. Eye strain? Close your eyes for a few seconds or move your focus from near to far. Cold? Put on a sweater.

Maybe the answer is a little more involved, like, “I wish I could talk to someone,” or “I need to get outside for some fresh air,” or “I need a hug.” We often need other people from our circle of support to help us, which is just fine. In fact, your close family members and friends want to know how they can help you.

Simple, easy, and helpful

It’s surprising how simple the solutions can be — if we do them early and don’t wait until the stiffness turns into a backache or our racing thoughts keep us awake at night.

Even taking a few slow, deep breaths can help to disengage our mind from distracting thoughts and sensations.

Again, this three-step technique is simple. It’s something I continue to do almost every day to bring my mind and body back into balance. If I could go back in time, I’d give myself a hug and say, “Thank you, Dagmar, for starting this habit early in your ALS journey.”

Try it out. I believe it can help you, too. This is one more way we can learn to live well while living 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.