I work on MyApnea!
I work on MyApnea!
Yes, to ReggieN's point above -
Two ideas in your post from a year ago will make a big difference:
don't lock old threads, encourage necroposting....I'm one of those "drive by" users looking for specific help at a specific point in my life and all the relevant topics are 1-3 years old. It would be great if I could post right on them and add to the knowledgebase in context.
send email notifications to posters when there is a reply to their post or on a thread they created. I've been checking back twice a day to see if anyone had advice on what I posted over a week ago, it would be nice to know I'll get a notification.
These changes - 1) no locked threads and 2) email notifications for new posts on subscribed topics - are now in place. Thanks to ReggieN, Biguglygremlin, Sierra, and others for raising (and reiterating) these issues. By default, a new user who signs up and makes a new topic will receive an email notification when someone (i.e. most likely Sierra!) has responded.
It's always good to be cautious, Orvwik! And thanks for the additional information, Tonawanda. Rebecca is indeed a research assistant at Brigham and Women's Hospital. I am part of the same research group and we are in the midst of a MyApnea project that includes focus groups. Any emails from us should come from either @partners.org, @bwh.harvard.edu, or @myapnea.org email addresses.
I pinged Rebecca to visit this thread when she is in the office next, which I think will be Wednesday. My guess is that the email comes through in that fashion due to our hospital's email settings. This is useful for us to know - we can look into how to make our invitations a little less suspicious looking in the future!
You can use the Help Center to search the entirety of the site, including forum topics/posts and the blog. Searching for "cough" yields a few results, including:
Apnea Board and CPAP Talk may also be good places to search. Good luck in finding answers!
Hey SSGF, the forum names are randomly generated to make things a bit more exciting than "Member927165". You can quickly change yours on the Settings page: https://myapnea.org/account
From my understanding, APAP stands for Automatic Positive Airway Pressure, which can vary the amount of pressure given over the night to best maintain an unobstructed airway. ASV, Adaptive Servo Ventilation, on the other hand, is a more sophisticated type of PAP device that is particularly useful in cases where central apneas are present.
Here's a page that describes some of this in more depth: https://www.sleepresolutions.com/blog/difference-between-apap-bipap-cpap-and-asv
Thanks for stopping by the forum!
Great post! These sort of personal narratives shine new light on my overall thinking about working in the field of sleep medicine. I am the research data guy and I have handled lots and lots of CPAP adherence data over time, however all those numbers on my computer screen only tell a part of the story. I expect many of the experiences and anecdotes you described here are common among other sleep apnea patients.
As I pore over the data I ask: Why did that newly diagnosed research participant become a CPAP rock star? Why did another try it for two nights and never put it on again?
The answers vary for many reasons, of course, but I think the emotional and social aspects of the "CPAP experience" that you highlighted cannot be overlooked. As you hinted at, it's all about striking the balance that maximizes one's quality of life.
I checked it out upon release but deleted it a day or two later because I don't regularly log my sleep, so it doesn't really apply to me. I have seen Motion-X 24/7 before as well and it is a very sleek app. I imagine SleepHealth is somewhat limited because they are using the underlying Apple ResearchKit technology, which makes things a bit more "utilitarian" looking.
I have yet to come across a highly rated ResearchKit app (e.g. PRIDE Study and GlucoSuccess have 2 star ratings) -- I'm not exactly sure why this is. Maybe because the apps aren't flashy and people download them initially with loftier expectations than what a research study can really offer?
Here's a link to the SleepHealth app for those that are interested: https://itunes.apple.com/us/app/sleephealth/id1059830442?mt=8
One of MyApnea.Org's leadership team, Dr. Susan Redline, was recently interviewed by Ann Fisher on WOSU's All Sides. She shares her thoughts on sleep research and the MyApnea.Org effort.
Listen on WOSU's site: http://radio.wosu.org/post/wellness-wednesday-sleep-patterns-eating-lean-martial-arts-fitness#stream/0
There is an interesting series of articles being published about sleep in The New Yorker this week by Maria Konnikova.
Part 1: Why Can't We Sleep
Part 2: The Work We Do While We Sleep
The articles touch on many areas of sleep research.
Here's a snippet:
... There’s sleep apnea, when your breathing pauses as you sleep, often for a few seconds but sometimes for a few minutes, before your body briefly jolts awake to restart the process. (Often, the jolt never makes it into conscious memory.) In trials, the disorder has been associated with diabetes and cardiovascular disease and has been shown to lead to cognitive impairment ...
For sleep scientists, all of these unpleasant disorders offer tantalizing lines of inquiry. The link between many of them and neurodegenerative disease, or other forms of cognitive impairment, suggests that sleep could be required for cognitive upkeep and function. Their link with heart disease suggests that sleep might serve to relieve vascular stress. The fact that insomnia is associated with depression suggests that sleep might help us deal with emotionally stressful or otherwise disruptive events.