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How about central nj support team?

PostPosted: Tue Mar 15, 2011 12:15 am
by john.michael
Let's make it easy for those messages to support important support groups to get going -- Face to Face!!to allow
W plenty of planning time.organization, not to mention nailing down a location, let's have a "meet the people nearby yuo and go home with all the phone numbers of people whom can help you. ( true friends). Plan some bowling. Or even an afternoon nap. Ehhhhhh talk tips and tricks and notice ,...,...,...!,..! What worts for one does not work for all. But here's a :twisted: big thing: most of should listen to the thing that worked for only one, because he is lie us and he found d something that worked, Maybe ,just maybe, that same thing will work for the otherwise seemingly hopeless person you just met. If only you took the only pone-off man more seriously, you might remember.


Now, please don't get me wrong. I see very few, if any, of the problems I satirized above actually happening here. :idea: but think about it. A large grouptgers of us on a sunny afternoon, chatting, saying over, and over, "Yeah, I know what you mean"
I Can make it happen at or near Rutgers in New Brunswick in April or May.


Cheers,
John



enough interest? Evenough in the area???

Sounds like great fun to me!!!

John

Re: Why is it necessary to have a support team?

PostPosted: Tue Mar 15, 2011 8:28 pm
by sleepysmurf
Sounds like a good idea john. Ive been looking for AWAKE meetings and fouund the closest ones in the New Brunswick area to be in Somerville or Toms River. It would be nice to get tips from people who have been using a cpap for a while

Re: Why is it necessary to have a support team?

PostPosted: Sun Jun 19, 2011 8:39 pm
by Lisa Feierstein
This forum is a great support network and to get it even deeper on an offline, local level is the AWAKE network, part of the American Sleep Apnea Association (ASAA), was founded to offer assistance to OSA patients and their families. The goal of the AWAKE network (which stands for Alert, Well, and Keeping Energetic) is to help its members become more aware of their sleep disorder, discuss new developments in the treatment of sleep apnea, and provide a supportive environment where people can share their own experiences.

AWAKE groups can be found in nearly every state. Each individual group is patient-centered, and the members themselves are responsible for setting up group activities and satisfying the needs of their own group. These regularly held meetings may discuss topics ranging from techniques of CPAP therapy to current research discoveries in sleep disorders. Other topics may include weight loss and other health issues, as well as potential legal ramifications for those with OSA. Individual groups might occasionally invite guest speakers to share their own stories.

Hope this helps and good luck with managing your sleep apnea!

Lisa Feierstein, Founder, Active Healthcare, Inc.
Raleigh, NC

Re: Why is it necessary to have a support team?

PostPosted: Fri Jun 24, 2011 5:52 pm
by Cpap4Husker
I joined this forum because I am increasingly finding that I do need support, and not sure where to find it locally.

Re: Why is it necessary to have a support team?

PostPosted: Tue Jul 19, 2011 12:29 pm
by roggey
As a counselor, I find this community to be an extremely valuable resource for those going through CPAP treatment.

I am quite dismayed at how little instruction is given to clients dealing with CPAP and OSA. As someone who was recently diagnosed, I feel I can help change some procedures and protocol from the inside out with my experiences. There's an excellent article on Cognitive Behavior Therapy and dealing with OSA: CBT and CPAP Compliance (http://respiratory-care-sleep-medicine. ... iance.aspx).

Besides missing the valuable training for therapists dealing with clients and compliance with their treatment, is basic understanding of what resources can be accessed when the therapists and medical/health professionals aren't available. I will certainly add this online support group to the list I'm compiling to help those in my community with OSA and working with CPAP treatments.

Re: Why is it necessary to have a support team?

PostPosted: Mon Sep 05, 2011 8:43 pm
by dhasenan
I'm not sure what a support team should do for me besides issue me the device, answer any questions I have, and ensure that the device is working for me periodically. In all, a doctor, an online retailer, and a manual. Not getting open hostility from my sleep partner is nice. Beyond that, why should anyone else ever know that I have a CPAP device? What benefit could I get from it?

Re: Why is it necessary to have a support team?

PostPosted: Sun Oct 09, 2011 8:46 am
by Ineedanap
From what I can tell, compliance in the general population is less than 50%. It seems everyone you talk to says they have a machine but don't use it. Is it any wonder when they hand you the same equipment they've handed everyone else and send you out the door? The nurse I saw kept reiterating how important compliance is but never gave me much as far as instruction on how to do it or how much work was going to be involved. I think the only real advise she gave was to use Ayr gel in my nose. They give you a number to call with questions but my experience with a DME that doesn't return calls is not unusual based on what Ive seen in this forum. Without being able to come to this forum and find the answers to my questions and see that other people have struggled with the same issues I have, I never would have gotten this far. I was determined to make this work but without this forum I just might have given up like everyone else. Even if I didn't, I would be woefully in the dark about my own treatment and the options available.

Re: Why is it necessary to have a support team?

PostPosted: Thu Oct 27, 2011 9:35 am
by amyandtoby2011
I found this forum while browsing google. So much of what's been said here makes sense to me, the need to tell others ifyou're comfortable, the article about CBT, some of your own experiences with adjusting to CPAP. Let me explain.
I had my first sleep study two nights ago. They did a split study, but didn't have enough data with me using CPAP. I have to go in next week to retake the test. Hopefully they'll find a good pressure then.
In my own experience, it has not been hard telling my mom or my friends-quite the opposite. I've suspected for a while now that I had some sleep problems-I'm always, always tired, and i've known for years and years that I snore.
But my doctor didn't explain details to me, not beyond the number of events (is that per hour?), and my desats (blood oxygen saturation) going down, and by how much. I called my clinic today to request another doctor. I've had several experience with this same doctor trying to tell me that I should not bring my guide dog (long story I'll tell some other time), and breezing in and then back out after talking mostly to me, or interrupting my answers to her questions. I need someone like the wonderful tech I had the other night, who will listen to my numerous questions, and go over things with me. I'm blind and cannot, that I know of at the moment, read my own report. I want to when this is all concluded and they've found what works for me.

I'm saddened to hear that so many people are having trouble and not getting the support they need. It's wrong, and health care and other organizations should be more attentive than that. Truly.

Part of me is terrified to use the mask, but part of me longs for it. There's a lot more about my story I could share, but this likely isn't the topic in which to do so. I'll just say that I'm going to look for a suupport group in my area, and I look forward to meeting people online who have struggled, and who are struggling, with this diagnosis and the changes it has and will bring.

Re: Why is it necessary to have a support team?

PostPosted: Thu Dec 22, 2011 12:29 pm
by Guest
I'm feeling like this whole experience is a sham! Especially when I went to the homecare equipment people this AM, got their quote, came home and price checked online - I can order the same darn thing online for 2/3 LESS than what they could "lease to own" including the co-pay from my insurance company! I'm a reasonably intelligent person and think that I'm best off relying on myself! (buy it online and set it up myself) I'd appreciate comments/opinions/advice

Re: Why is it necessary to have a support team?

PostPosted: Fri Dec 23, 2011 11:27 am
by Mary Z
Go right ahead. I'm glad you know how to set up your machine yourself. It's simple economics with online stores- you don't get hands on support. But by all means, guest, by online and save some bucks.

Re: Why is it necessary to have a support team?

PostPosted: Fri Dec 23, 2011 11:31 am
by Mary Z
amyandtoby2011. It's event average per hour. If you had asked on the forum what to ask your doc you would have gotten a lot of feedback. If you don't like the doc- get a new one. Hope it gets better with your present doc.
Ask for what you need from the medical/professional community, don't expect them to read your minds. Some people could care less about the details. Make your interests known. Write down important questions.

Re: Why is it necessary to have a support team?

PostPosted: Fri Jan 06, 2012 6:54 pm
by Rob103
I rather enjoy my CPAP. I like the feeling of taking a deep breath without much effort.

Re: Why is it necessary to have a support team?

PostPosted: Sat Jan 21, 2012 12:18 pm
by Gazhacks
It maybe necessary but it just aint happening, welcome to the UK, heres your machine and your mask, come back in 2 years :x Oh and dont touch the machine or try and get your readings. Also DO NOT attempt to adjust your machine as you may lose it. Maybe its ok in the states and other countries to play around and adjust your settings but try it here and you will feel the wrath of your doctors and nurses.

My support team is a computer with a hundred million people that I can get in touch with, its also the little old gentleman that figured out how to stop the mask riding on his face or the 18 year old that figured out how to warm the hose in winter to stop rain out by warming it under the duvet. This is my support team and Im forever gratefull that theres always someone there to listen and help. Thank you :wink:

Re: Why is it necessary to have a support team?

PostPosted: Sun Feb 19, 2012 3:31 pm
by chunkyfrog
There is no support without the TEAM.
Thanks to all my team members here on cpaptalk, my therapy is almost as easy as going to sleep at night.

Re: Why is it necessary to have a support team?

PostPosted: Sun Feb 19, 2012 5:42 pm
by Gazhacks
Image




One of my new Team members :D