On the MyApnea staff team working to improve the lives of sleep apnea patients
Boston, MA, USA
First- sorry for my delayed reply!!! And thank you for all the great comments and stories.
It sounds like the impact of sleep apnea on work has varied widely but has often impacted important quality of life issues- ranging from not being able to concentrate on the newspaper, to being in a serious accident (wiredgeorge-- so glad you are okay).
I found it interesting that several of you mentioned that treatment can have varying affects. It can be a life changer, make a small but noticeable difference, or take months to make an impact if at all.
On that note, recently, MyApnea researchers have been investigating trends in the MyApnea survey data on that topic: sleep apnea patients who use their CPAP machines and still feel sleepy. I wonder how common this concern is for the MyApnea community and for sleep apnea patients broadly...
Hello MyApnea Community!
The MyApnea surveys are temporarily unavailable due to some technical updates we are conducting. If you visited the surveys in the last few days and could not complete them, please check-in again soon! We will notify you when they are up and running again.
To everyone who has already completed the core surveys – thank you. Your contribution helps researchers better understand how sleep apnea and other sleep issues impact people’s daily lives, and that can contribute to better patient care in the future.
We’ll keep you updated as to when the surveys will be live and available again.
Labor Day got me thinking about how sleep apnea affects people as workers. Sleep apnea can affect more than sleep. It can affect relationships and professional lives too. What are people's experiences managing their jobs and their sleep apnea?
Has anyone had to change their work or leave their work?
Has anyone worked with a manager to accommodate their sleep condition?
Has anyone noticed positive changes at work following treatment?
What lessons have you learned along the way that can help others?
Thanks Remo! It's cool to see an overview about the MyApnea community on the Timeline. I was happy to see that almost exactly half of the users who completed surveys are men and half are women! It was also great to see that about 97% of people who did the surveys are willing to participate in future research.
Also, we are still doing the gift card raffles! Another draw is coming up this week!
We just did the first $50 gift card raffle draw for the 108 people who have completed the new MyApnea surveys. Congratulations to the winner! We will have many more draws in the coming months for those who complete the surveys. Does anyone have any questions about the surveys so far? What do you think about the printable personalized report?
Thank you for your feedback. We're sorry to hear you were disappointed with the surveys. We forwarded your concerns to our research team and will incorporate your feedback into future versions of the surveys. As always, we encourage specific feedback on the MyApnea research and overall site from all our users. Our patient-research team is committed to MyApnea being patient-powered. Keep in touch, and feel free to share feedback anytime with the support team anytime: email@example.com.
Thanks so much for following up. If you email me directly, I'll resend you the email (unencrypted) with your permission.
Also, we are going to do everything we can to avoid this system in the future so that it isn't such a hassle for you all. We are grateful for your feedback and for your interest in participating in research!
Thank you for reaching out. We send encrypted emails about research studies through our research organization "Partners Healthcare",
which unfortunately requires you to jump through a few hoops. It requires you to initially set up and activate an account with a password. You can then use the password to access secure emails sent to you from Partners HealthCare. If you prefer, we can send you an “unencrypted” email that is not secure and could result in the unauthorized use or disclosure of your information. If you want to receive communications by unencrypted email despite these risks, Partners HealthCare will not be held responsible. I emailed you because you were randomly selected from the 12,000 MyApnea.Org users for a small research study where we are doing online focus groups to discuss the website this Sunday or Tuesday. Respond to my email if you want me to send you the info by unencrypted email!
To reiterate what Mike said, a good rule of thumb to make sure emails from us are not SPAM, is to look for emails ending in: @partners.org, @bwh.harvard.edu, or @myapnea.org email addresses.
Thank you all for your vigilance. Keep in touch!
Hi! When you mentioned singing, it reminded me of this myapnea blog post: https://myapnea.org/blog/2017/10/n-of-1-trials-the-case-of-the-didgeridoo
A didgeridoo instructor had the theory that playing this wind instrument could strengthen the upper airway muscles. A small experiment was done and the group that played didgeridoo lowered their AHI by more than the comparison group AND reduced daytime sleepiness. If you like trying new solutions at home, you might be interested in participating in a 'N of 1 trial'. Check out the blog and comment if you want to learn more. I think this is a cool way to get creative patient ideas/ solutions into the research world :). Curious what you think...