03/05/2012
Angela Wrigglesworth

Let’s just say that the last session has made me totally cognizant of my breathing. Dr. Lisa Wolfe from Chicago discussed the topic of pulmonology, and I’m already breathing easier. I learned a great deal and was interested in several things in particular:

1. There are four questions that patients with neuromuscular diseases should be asked during a clinic experience regarding their lung function. I’ll list them and respond as if I were the patient (please keep in mind that my ultimate goals in life are to please people and to make others laugh, and these goals seem to be intensified when I’m in a doctor’s office):
   • Do you have difficulty breathing? Well, I guess it depends on the day. When one of my students has sneezed directly in my face forcing a full-on germ attack against my immune system and I am therefore, three days later, experiencing a mucus-y blob crawling down the back of my throat, then yes, it is difficult to breathe. Other than that, I’m good to go.
   • Can you cough? Absolutely!!! But it sounds like I am either lightly sneezing or whispering and most people say either “bless you” or “speak up, I can’t hear you,” respectively.
   • Can you clear your nose? I can, but it takes more than one person to make it happen. Me … to blow and then immediately feel like I’ve run a marathon. My aide … to squeeze one of my nostrils, hold the tissue, and make a face that is clearly saying “eww…” And one of my students to check the outcome and promptly tell me that the booger is still in my nose.
   • Do you have trouble breathing at night? Ummm … I don’t think so. Do I wake up gasping for air? No. Unless I have that awful drowning nightmare. I’m just so insanely tired at the end of the day that I really couldn’t tell you if I’m struggling to breathe because I’m sleeping like a rock. Aren’t you proud of me, Doctor?
2. We need to encourage sleep labs to provide accommodations for patients with neuromuscular diseases in order for data to be collected on their sleeping habits. These include: lifts, hospital beds, adaptive call systems, caregiver space and bedside commodes. Currently most sleep labs consider acceptable accommodations to be widened doorways. Really?
3. People with neuromuscular diseases should avoid sleep machines that have the following words or phrases in the title of the mechanism: Flex, Pro, S, or Auto. These are designed for those with sleep apnea and are not good for us. Similarly, machines labeled with the term SV are made for users with heart disease and are inappropriate for the neuromuscular disorders. Good to know!!
4. Dr. Wolfe’s final take-away for me was a mechanism called the Orastretch to loosen or prevent contractures of the jaw. As if I need a bigger mouth, right? But seriously, being able to open your mouth is not just important for fitting in your favorite foods (let’s face it — no one eats one French fry at a time), but it is also a key factor in dental care. Great — now I’m thinking about the dentist. I’m destined to have a dentist nightmare tonight … I’ll probably end up gasping for air!