VentilatedVoices: Best & Worst

In our first VentilatedVoices questionnaire, recipients of our Breathe with MD, Inc. monthly email update and our social media followers were asked, "What is the BEST thing about living with breathing muscle weakness in Neuromuscular Disease (NMD)?" and “What is the WORST thing about living with breathing muscle weakness in Neuromuscular Disease (NMD)?"  We appreciate all who participated, especially those who agreed to allow us to share a portion or all of their feedback. Below are a few of the responses regarding the BEST thing about living with breathing muscle weakness in NMD, as stated by individuals living with an NMD and using mechanical ventilation. 
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“I would say there is no 'best' thing.” - N.R., CA, USA

“Essentially my lungs are not the problem and because of technology our mechanical ventilation can adequately compensate for our muscle weakness.” - V.G., GA, USA

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“Friendship & support made with others in same situation.” - G.M., Glasgow, Scotland

“Makes me value the little things in life most take for granted.” - C.V., CA, USA

“I've become more resilient.” - L.J., VA USA

Below are a few of the responses regarding the WORST thing about living with breathing muscle weakness in NMD, as stated by individuals living with an NMD and using mechanical ventilation. 
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“I don’t like that I have to rely on electricity to sleep or take a nap, and that external batteries are expensive, not covered by insurance, and they are heavy.” - N.R., CA, USA

“Always on the edge of going to the hospital and not being able to actually do the things you want to do.” - J.A., VA, USA

“It limits what I can do, because I get out of breath with exertion. So, it keeps me pretty much home bound most of the time.” - B.S., WA, USA

“The pain, exhaustion, fear. Both mentally and emotionally and physically.” - C.V., CA, USA

“But that is a toss up to travel--to have to lug large pieces of equipment around onto a plane or from hotel to hotel is even worse---dealing with the travel personnel and difficulty of set up on small bedside tables makes a trip so much more difficult than it has to be.” - V.G., GA, USA

​VentilatedVoices is one way we help raise awareness about the opportunities and challenges for those using mechanical ventilation for Neuromuscular breathing weakness.  Look for future VentilatedVoices questionnaires to share your experiences and feedback.