If you are just starting out as a new CPAP user you will find that a little support goes a long way.  Family support is important but it is support from other users that will truly allow you to find what will work for you.  The problem is that most physician’s offices and DME companies do not tell you where to find support.  But if you look online and in your community there are some great support groups.

 

Local Support Groups

The American Sleep Association is an excellent resource for finding local support groups.  They are the association that started the A.W.A.K.E. groups.  They have even started on online meeting for truck drivers since they have unique issues such as repeated testing and traveling with their machine.  Their website sleepapnea.org also has up to date research, and an online forum to have questions answered.  If there is not a support group near you then they will help you start one up. 

 

 

Online Support Groups

Talkaboutsleep.com was started by a sleep apnea patient who felt she needed more support.  The site has a chat room, message board and strong basic information about sleep disorders.  The most interesting part of the site is the reviews of equipment and the comparisons of the masks.  Once a quarter they will trial two similar masks from different manufacturers.  They send samples to members to trial and then review.  This gives people the opportunity to hear what actual patients think of new masks when they come out.  They also have an excellent store to buy masks and accessories for your machine.

 

Sleepguide.com is a message board for sleep patients.  There are patients and health care professionals who frequent the site and answer each others questions.  You will find many opinions from different sources. 

 

Physician Sites

DrStevenPark.com is a great resource.  He has monthly webinar that answers pre-submitted questions on CPAP and sleep disorders.  His site has interviews with other healthcare professionals and medical articles.  He also has a book for sale called Sleep Interrupted. 

 

About.com has a page on sleep disorders that is written by Dr. Brandon Peters.  He has a weekly newsletter that covers basic topics such as what is sleep apnea and new treatment options. Everything he has written is archived on the website so you are able to look up specific topics or disorders.  This site covers many sleep disorders including Restless Leg Syndrome, REM Behavior Disorder ad Sleep Talking to name a few.

 

Seeking Help is the Key

If you are starting out with CPAP these sites and groups will help you to understand you are not alone.  It will also help you to overcome problems that might arise while you get used to the new therapy.  The more educated you are about your disorder and the more support you seek the more successful you will be.

 


Comments

AwakeInAmerica.info link
12/16/2010 08:40

Good post. Another resource is Awake In America.

Awake In America (http://awakeinamerica.info/) is a national 501c3 non-profit organization (http://awakeinamerica.info/admin/aboutus/), launched in 2004, and is focused on sleep, sleep hygiene, sleep deprivation, drowsy/fatigued driving, sleep-related issues, and sleep disorders.


We have a growing network of 23 community education and support groups around the country at present, though most are lab- or physician-based and open only to current patients.

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marcia
12/16/2010 09:23

Thanks Amy...

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