Evan Luebbe - he works so hard for those muscles!  My son Andre. 16 FA

Lung Capacity and Weakness Return to Index
Most if not all advanced FA'ers have weak lungs. Some cannot take deep breaths and so run out of air mid-sentence when talking. Others can take a deep breath but it all rushes out when they speak and they still run out of air before the end of a sentence. Why is this?
  1. The diaphragm ("lung muscles") nerves are progressively affected by FA and so tends to weaken as the nerve input weakens, resulting in shallow breathing.
  2. Relatively few FA'ers do exercises that would strengthen their lung capacity
  3. Atrophy applies to lungs as well as any other muscle-driven part of the body so "if you don't use 'em (fully and vigorously) you lose 'em (partially)".
  4. If a FA'er has developing heart problems that could cause shortness of breath.
  5. Always remember there are non-FA conditions FA can develop, for instance restricted lung disease, an obstructive lung disease, or asthma.
Here are inputs by FA parents and IS NOT VETTED for safety or effectiveness. Talk to your doctor before launching off too far into these things that have worked individually for others.
  • Exercises:
  • (a doctor can prescribe an incentive spirometer)

  • Try the deep breathing app Pranayama. It's free and you can get it on your phone. It helps me.

  • So he had her come in and do a baseline pulmonary function test, then had her run around outside for a few minutes and do it again, then he gave her a breathing treatment (albuterol in the nebulizer) and compared all the results. Conclusion was exercised induced asthma. She never had any wheezing or other apparent shortness of breath. Just the chest pain. So now she takes her inhaler before PE or any other exercise.

  • Many FAers experience aspiration; ie, the little flapper that closes off the lungs when swallowing tends not to work as well as it should so food gets into the lungs. Not good, and can lead to lung/breathing problems.

  • Allergies happen. My FA daughter has some allergies which compound her shallow breathing and aspiration.

  • HCM and tachyardia (rapid heartbeat) and other heart related issues. My FA daughter experiences occasional tachyardia. This can occur more easily when she's tired, stressed or emotional. Increased difficulty breathing goes with this.

  • Panic attacks as you state can go along with much of the above. And when someone says "just breathe slowly and deeply" it doesn't help because you can't do it.

  • For some a CPAP or BiPAP machine may help breathing.

  • She was also on a CPAP machine but that is for sleep apnea. I took her to the city for another sleep study done with bigger and better equipment and a lung doctor that her cardiologist recommended. The one who did two of Amanda's sleep studies only tested for sleep apnea. She does not have sleep apnea. Anyway, she was on the wrong machine. Her body builds up with carbon dioxide. She needed a BiPAP machine which breaths in and out. Takes over and breaths deeper so carbon dioxide can get out of her system. We went through almost a whole year of this. They gave her an oxygen concentrator because her 02 stats also dropped (this does not necessarily happen to everyone who needs a BiPAP machine.) Also, her lungs are weaker so when she is in a deep sleep they just want to relax a bit too much and caused her to panic every time this happened which only made it worse. As of now she uses a BiPAP machine 15 to 20 hours a day. She hasn't need 02 much at all since she got her by BiPAP machine.

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