Monday, December 11, 2017

Follow Ann's Myotonic Dystrophy blog

I am SO EXCITED to announce that you can now register to follow my blog. Please go to http://livingwithmyotonicdystrophy.com and at the bottom of the website page you can register.

The purpose of my blog is to help educate individuals as to the complexity of Myotonic Dystrophy. Even those of us who live with it tend to forget how multi-systemic this disorder is.

I was just talking to a dear friend about the loss of her myotonic daughter due to excessive levels of CO2. Her daughters levels were over 300. It's heartbreaking that we are still losing family members because this disease is still not entirely understood.

Michael and Chad saw the new pulmonologist who monitored their CO2 levels  I thought that their levels of 51 were excessive. Normal is 35-45. Michael and Chad have been provided with a new machine instead of bi-pap to help them with their sleep apnea. The machine is a Respironics Trilogy Active with PAP (Positive Air Pressure) Exhalation assistance. Excessive CO2 is toxic and can cause confusion, lethargy, sleepiness, and if not treated, death.

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