Every night, I wear a Bilevel Positive Airway Pressure (aPAP) mask during sleep. For Duchenne muscular dystrophy (DMD) patients, this device is vital for counteracting a serious depletion in breathing function and improving quality of life. As you sleep, your breathing muscles naturally relax themselves, which doesn’t mix well for someone like me. This can cause breathing obstructions, such as sleep apnea.
It became clear I would soon need this type of ventilator when I was around age 21. I’d sleep a healthy amount of hours, but when I got out of bed, I felt restless. This is a sign of breathing abnormalities.
The process to receive the needed medical equipment involved me getting several sleep studies until it was determined I would benefit from using it.
For each study, I went either to the hospital, where my clinic is located, or another campus associated with the facility. I would arrive a few hours early and settle in for sleeping later, though it was often the opposite of a settling in, more comfortable experience.
Read more about DMD treatment
There was a cavalcade of sensors over my body that needed the specialists monitoring my study to get the required readings. What I remember most is a glue-like substance around my hair used to hold some of the wiring in place. It would take days to wash it out.
I slept in a hospital bed that seemed rock hard compared to the comfortable mattress I have at home. It was also bone-chilling cold In my room. This would typically result in me struggling to fall and stay asleep. Throughout the night my eyes were fixated at the clock on the wall, as I looked forward to being able to leave in the morning with great anticipation.
After getting very little sleep, my dad and I would be asked to clear the room at 6 a.m. for patients later that day. This is much earlier than I wake up most days, which left me greatly fatigued. Since this was set in a pediatric environment, the sleeping hours were structured around a child’s sleeping patterns.
The Need For Flexible DMD Studies
I believe the studies could have been better handled, especially when I was a little older. What was most glaring was the lack of flexibility shown to my particular needs. When pressed on the issues, I often described my doctor and the sleep technicians as less than sympathetic about the situation.
I would have liked to have seen more effort from the various medical professionals that I interacted with for testing to prioritize my comfort level. For example, there could have been more coordination between my pulmonologist and the sleep technicians to explain what would work well for me and what would not.
There are facilities that would be more attuned to an adult’s sleep cycle. One downside of this would likely be that the staff at the alternate location wouldn’t have the best understanding of DMD. This would be a circumstance where the coordination with my doctor, as I mentioned earlier, could play a more effective role.
Home sleep studies can be prescribed by your physician. However, you may be offered a more scaled down version of the sensors for the test, making the results less accurate. Nonetheless, this equipment is almost exclusively geared toward measuring breathing data. Since this is often the source of breathing dysfunction in DMD patients, it could potentially cast light on what the problem is. It could also provide the patient with an environment conducive to extra hours of sleep. Despite this, I don’t really remember discussing this with my doctor.
The diagnostic process of using sleep study results as a requirement to obtain a sleep aid might not even be completely necessary for DMD patients, I believe. With this disease, it’s almost a known certainty that lung function will diminish in the teen and young adult years. Logically, I would think the knowledge of this alone could be a reason to get one of these devices.
I owe the BIPAP for probably extending my life by years. The steps needed to acquiring the device could use some mending in my opinion though. I think a patient like me should have a little more freedom to choose from any viable options available for his/herrcare preferences.