Needing Speech Therapy With SMA

Recovering from my kidney stone removal didn’t go as planned. I expected some discomfort, but I never anticipated the complications that followed. Since it was an outpatient procedure, I went home the same day. My throat felt weak after the removal of the LMA airway, but I was managing. That night, though, the pain became unbearable, and I returned to the emergency room. They admitted me, and after a day in a hospital bed, they attempted to transfer me back into my wheelchair.

Because of my spinal muscular atrophy (SMA), transfers require specific positioning and movements. As they rolled me to place the sling under my body, the upper part of my throat locked up. It felt like it was closing, and I couldn’t speak. Breathing felt impossible. My oxygen levels stayed stable, but the only relief came when my dad held my head in a perfectly upright position. The moment my head shifted, my throat froze again.

I had never felt my throat this weak

I had never felt my throat this weak, and even speaking took more effort. My doctors attributed these issues to my SMA-related muscle weakness, something I had always been aware of but never actively addressed. Before this, I managed fine. This surgery changed that.

After I was discharged, the weakness in my throat persisted. I soon learned I would need another procedure under anesthesia, which made me even more concerned about my throat muscles. I asked my doctor what I could do to strengthen them, and they recommended speech therapy.

The unexpected benefits of speech therapy

At first, I hesitated. I always thought of speech therapy as something for children learning to talk, not for adults dealing with muscle weakness. But after just a few sessions, I realized how valuable it was not just for my recovery but for my overall quality of life.

Speech therapy for SMA focuses on more than just speaking. It strengthens the muscles used for swallowing, breathing, and vocal endurance. Since SMA weakens muscles over time, the ones responsible for speech and swallowing are no exception. Before surgery, I occasionally coughed while drinking or eating and needed breaks during long conversations. After surgery, everything became noticeably harder.

My therapist explained that SMA-related muscle weakness can make it difficult to clear my throat, increasing the risk of aspiration (when food or liquid enters the airway). This puts me at a higher risk for respiratory infections. Strengthening these muscles could reduce those risks and improve my ability to eat, drink, and speak without strain.

What speech therapy looks like

The goal of each session was to maintain and build on the muscle strength I have. Every exercise I practice now will help me prepare for my next surgery.

Each session targets different aspects of my throat and mouth muscles. We work on breath support exercises, which help me project my voice without straining. Swallowing exercises focus on coordination and control to ensure I can eat and drink safely. Some sessions include techniques to improve articulation and reduce fatigue when speaking for long periods.

One of the simplest yet most effective exercises for me involves practicing controlled swallows with different textures of food and liquid. My therapist also taught me small, targeted movements for my tongue and jaw to build strength. These exercises seemed minor at first, but they made a huge difference in my daily life.

Why speech therapy matters with SMA

Many people with SMA don’t consider speech therapy until problems arise. But these muscles weaken gradually, and therapy can help maintain function before serious complications occur.

For me, speech therapy became a game-changer. I never realized how much energy I wasted compensating for my weakened muscles until I learned proper techniques. Drinking water no longer felt like a gamble, and I could have conversations without needing constant breaks.

Looking ahead

I wish I had started speech therapy sooner. My experience after surgery forced me to recognize that even though I had adapted to my body’s limitations, I didn’t have to accept them without seeking help. Now, I see speech therapy as an essential part of managing my SMA, just like physical therapy and respiratory care.

If you have SMA and have ever struggled with swallowing, speaking, or breath control, I encourage you to explore speech therapy. It's never too late to invest in your quality of life.