Breathless: A Personal Reflection

It has been over twelve years since I first noticed the symptoms and more than ten years since my ALS diagnosis. Most people with this disease don’t endure it this long—many live less than five years after diagnosis, and only a few surpass the fifteen-year mark. I consider myself incredibly fortunate to have made it this far. But ALS is relentless, and until there is a treatment or cure, it will eventually claim us all.

One of the most challenging aspects of this journey is becoming respiratory compromised. The physical decline is difficult enough, but the anxiety that accompanies it can be overwhelming.

A key symptom signaling this decline is hypercapnia, or CO2 retention. It often sneaks up quietly, masked by symptoms that mimic other conditions—confusion, headaches, blurred vision. For me, however, it’s the panic this triggers that is most difficult to manage.

It often starts with something as simple as a cough or a tickle in my throat. That cough brings on shortness of breath, which quickly turns into an inability to fully fill my lungs between coughs. This triggers an intense air hunger—a desperate need for breath that I cannot satisfy. Being unable to reposition myself only worsens the sensation. Imagine being cocooned, unable to move, and rapidly losing the ability to draw in precious air. It’s terrifying.

When this happens, it quickly escalates into a respiratory emergency. Thankfully, the BIPAP or ventilator provides mechanical respiratory assistance that helps quell the panic. As the machine supports my breathing, my lungs slowly recover from the assault. And as my lungs recover, my mind gradually retreats from the edge of that terrifying precipice.

This cycle continues to evolve. The episodes become more frequent and last longer. Eventually, there comes a deeply personal decision: whether to prolong life with more invasive measures or to let go. There is no right or wrong answer. It is a choice that must be made by me and my family, together, with love and understanding.

Coping and Managing Respiratory Episodes

While this journey is undeniably challenging, there are strategies that have helped me manage the panic and physical distress during respiratory episodes:

Breathing Techniques: When I feel the panic rising, I try to focus on slow, controlled breathing—inhale deeply through the nose and exhale slowly through pursed lips. It’s not always easy, but it helps calm the mind and body.

Use of Mechanical Support: Early and consistent use of BIPAP or ventilatory support can reduce the frequency and severity of episodes. It’s important to work closely with your healthcare team to optimize settings and timing.

Positioning: Although my mobility is limited, adjusting my position as much as possible—sitting upright or slightly leaning forward—can sometimes ease breathlessness.

Mindfulness and Grounding: Techniques like mindfulness meditation or grounding exercises help me stay present and reduce anxiety during moments of breathlessness.

Open Communication: Sharing my experiences and fears with family, caregivers, and medical professionals creates a support network that is invaluable.

Planning Ahead: Discussing advance care decisions early with loved ones ensures that my wishes are understood and respected when difficult choices arise.

Living with ALS means living with uncertainty, fear, and loss, but also with resilience and hope. I share this reflection not just to describe the physical challenges, but to shed light on the emotional journey that accompanies this disease. To anyone walking a similar path, you are not alone.

TJO