Why Individuals with SMA May Struggle to Communicate Their Needs?

Some individuals with SMA may struggle to communicate their needs, not because they lack intelligence or understanding, but because the condition can affect the muscles and energy required to speak clearly, project the voice, repeat themselves, or communicate for long periods. Research on bulbar function in SMA explains that more severe forms can involve weakness in the mouth and throat muscles, leading to challenges with communication, voice, speech, and swallowing.

Communication challenges in Spinal Muscular Atrophy can look different from person to person. Some individuals may have a softer voice, shortness of breath while talking, fatigue during conversations, difficulty being understood by unfamiliar listeners, jaw weakness, swallowing concerns, or trouble speaking loudly in noisy environments. A systematic review of respiratory, swallowing, feeding, and speech function in SMA reported speech-related challenges such as shortness of breath, fatigue while talking, weak voice, and needing to repeat conversation across SMA types. This is why patience matters: when someone with SMA is trying to explain pain, discomfort, equipment needs, positioning problems, caregiving concerns, or medical symptoms, rushing them or speaking over them can make communication even harder.

Watch Full Episode on YouTube:

https://youtu.be/pzKSuZ4cb98

Connect with Victor Guerra:

Personal Instagram: 

https://www.instagram.com/Victortheinspiration/

The SMA Victor Instagram:

https://www.instagram.com/TheSMAVictor/

The SMA Victor TikTok:

https://www.tiktok.com/@TheSMAVictor

The SMA Victor Podcast Episodes: 

https://www.youtube.com/playlist?list=PL7BT7VJqpaR7rASeJHidduTFEcqLSA0Ic

The SMA Victor Q&A:

https://www.youtube.com/playlist?list=PL7BT7VJqpaR7YFKqOYqs8lCeih48RO-5B

Learn More About SMA:

https://youtube.com/playlist?list=PL7BT7VJqpaR5ZI1hZ5dkVPIfjbdqvPnZE&si=WRV8gj2102jCn6mI

The SMA Victor FAQs:

https://www.youtube.com/playlist?list=PL7BT7VJqpaR4Mzd1ul1g2_XHy4Jn61oOK

The SMA Victor Music:

https://www.youtube.com/playlist?list=PL7BT7VJqpaR50uUMYbVhYsdncM-Bf1mO1

Victor's Life with SMA: 

https://youtube.com/playlist?list=PLXeepRh23LFqpR6iOdsaVjgYaeRX5u_eP&si=fYKi0SN0JL1KVtcf

My book, Become the Victor: Turning Trials into Triumph, tells my personal journey and offers guidance for anyone who feels stuck, discouraged, or unsure how to move forward. It is a reminder that “your greatest tests will become your greatest testimony.” It is available online at Barnes & Noble, Amazon, iTunes, and Google Play Books. 

Get My Book:

My Author Website:
https://christianfaithpublishing.com/books/?book=become-the-victor

Barnes & Noble:
https://www.barnesandnoble.com/w/become-the-victor-victor-guerra-victortheinspiration/1149224892?ean=9798901061305

Amazon: 
https://www.amazon.com/gp/aw/d/B0GHB1KQNH/ref=tmm_pap_swatch_0

iTunes:
https://itunes.apple.com/us/book/isbn9798897855186

Google Play Books: 
https://play.google.com/store/books/details/Victor_Guerra_Victortheinspiration_Become_the_Vict?id=YYTCEQAAQBAJ

ReaderHouse:

https://readerhouse.com/product/become-the-victor/

Leave a comment

Please note, comments must be approved before they are published