Sleep Blog

I am outspoken, but for what I do and what I have always done, that is simply a good thing, a virtue even. I am well-versed, a former journalist, and in January 2000, I became a very vocal sleep advocate.

On the Internet, as in real life, I take guff from no one. If you ever see an instance where you think I am taking guff from someone, watch out: There is absolutely no telling why I am being restrained. Rest assured, I do have a reason. Remember, this is one of my personal blogs, and as such, that means anything written here is strictly my opinion — not that of any organization of which I may be affiliated with in any capacity.

On my part, at least here, on the Sleep Blog, there is just no holding back. That means that those who know me from a variety of online resources may read things here that they never have before heard from me because of various affiliations I have. I have always attempt to steer clear of any conflicts or misunderstandings.

Here on my personal blog, though, that’s all different. The Sleep Blog is focused on entirely on sleep. There are no conflicts. Any affiliations I may have with organizations are just that: affiliations. They are for identification only, not any sort of representation. What I express here is just that: my personal opinion. Is that clear? I speak for myself, not any organization, and, in turn, they do not speak for me.

If you agree or disagree with anything here on the Sleep Blog, feel free to jump in and say so. Whatever you do, though, just be sure to not use vulgarities on my blog: you simply will not like the results.

Ways I can help you

There are a number of ways I can help you here on the Sleep Blog. I can answer questions on sleep disorders, in general, and sleep apnea, specifically.

I’ve been actively involved in providing direct support to individuals, family members, employers, and others on the topics of sleep and sleep disorders for more than six years, keep up-to-date on valid, peer-reviewed research, as well as treatment options. Bear in mind, I am not a physician, nor do I play one on television. Most of the time I will give you sound advice, but all will end with one thing: get checked out by a qualified physician. Make no mistake about that.

If you want a sure-fire, quick fix by someone over the Internet, I suggest you look to one of the famous Canadian pharmacies or some outsourced phone bank in some remote area of India. I can answer general questions including, but not limited to polysomnography (PSG or sleep study) techniques; health issues associated with sleep apnea; compliance with a CPAP or BiPAP machine, mask selection and fitting; insurance coverage; ADA issues; and more, but cannot, nay, will not provide diagnosis over the Internet. That’s not my job, and if it were, I still wouldn’t do it over the Internet. I’d do it in a medical office and charge a few hundred dollars for a 20 minute visit. Get my drift?

Why can I answer only general questions? The question would be better asked why I will not answer specific questions. That’s the easy part. Your health is unique, or, in redundant terms, "individually unique," meaning that while there’s a lot of research that has been conducted in the world of sleep over the past few decades, there is none that can foretell any specific individual’s future.

What may hold true for your friend, for instance, may not be true for you. It’s just like if both you and your best friend like to drive. You both want to own your own vehicles, having the freedom to move about a will, but your taste, your selection in vehicle is vastly different. For example, you may prefer an environmentally-friendly sub-compact car that gets 50 miles to the gallon, but your neighbor may prefer a H2 Hummer.

The same holds true with health care issues. While one person may suffer issues X, Y, and Z, as fully supported by research, you may suffer issues D, T, and S, never experiencing anything the other person experienced.

What’s my experience with sleep?

On January 1, 2000, in an Intensive Care Unit (ICU) unit of a Northeast Philadelphia hospital, I was diagnosed with sleep apnea, along with a couple other sleep disorders, not to mention some very serious, very nasty health conditions related to many years of undiagnosed, therefore, untreated sleep disorders.

After somewhere around three months of fiddling with the equipment, adding a heated humidifier to the gear, and finding the right mask for me, I became 100 percent compliant with my BiPAP therapy. I have seemingly experienced what seems to be all the same, nay, all the classic problems everyone else who’s ever used a CPAP, BiPAP, or other xPAP device has experienced, suffers. Things such as mask problems, humidification problems, among others.

In March 2000, I put in motion the groundwork for what would, in October 2000, become Awake In Philly,  a community education and support group established here in Philadelphia, PA (USA). The intent, as established, continues to be that the group provide support and educational meetings and events for others about the true costs of sleep issues, including sleep disorders, sleep deprivation.

We also work to educate the public, employers, and government and elected officials, as well as health care professionals about the dangers of these issues. Since getting diagnosed, I’ve become a very vocal, very pro-active sleep activist, dedicated to helping others before they suffer the many woes that too often accompany untreated and undiagnosed sleep disorders and sleep deprivation.

As exhibited above with some of the things I am involved with, it shows I am heavily into philanthropical endeavors.

While I do a lot of "real world" world, I also do a lot of virtual, or online, volunteer work. I’ve been involved with AllExperts.com, as a resource on the Sleep Apnea forum, for several years now. I also serve as co-moderator and moderator on more than a handful of sleep-related email discussion lists and forums, including CPAPusers-L and Apnea Kinksters.

In addition to working locally, I always think globally, yet act responsibly in all I do, yet have managed to extend the reach of my work nationally. I am involved with Awake In America, Inc., an all-volunteer national non-profit focused on sleep and sleep disorders. An all-volunteer organization is one where the people involved are committed to the efforts, and one in which no one is paid or compensated for their work with the organization, where all funds may be used for operations and actual work to fulfill the organization’s missions.

I know of no other non-profit corporation that can make that bold statement. Hell, I’d love to see any non-profit in Washington, D.C., or elsewhere say that. It is simply a very clear level of commitment to the sleep community, and one I see no other non-profit, or, for that matter, any other organization making.

Awake In America was organized to assist others around the country to quickly and effectively launch support groups, but also to work on community awareness of sleep disorders, serve as an outreach source, among other issues. Awake In America also launched the only national xPAP Donation and Relief Program, which is designed to assist individuals without insurance or the financial means necessary, obtain equipment and supplies essential to treating diagnosed sleep apnea. We also have a national Sleep Study Relief Program, again, the first in the nation, and the only one of its kind in the nation.

Having spent more than 20 years as an investigative journalist and editor, I do careful, tedious research on all issues involving sleep and sleep disorders. I question everything in studies and reports, challenging findings, wanting to see if everything using strict scientific methods, uninfluenced by funding flowing from specific interest groups.

How does that help me in the field of sleep? That’s simple. Is there anything that a doctor knows that he does not learn through learning? Through education? No, not a single thing. Sure, some things are learned on-the-job, but the basics of sleep are learned in the books on the subject — the books written by those practicing sleep medicine. They are the books I read, as well as many reports, findings, and journals.

Am I saying I am qualified as a physician? Clearly, I never said that. I did, rather clearly say that I am not a physician, nor would I attempt to diagnose. I will, however, use my knowledge, my research and analytical skills, and all my other skills to help others. I also use my background to see through, wade through, and cut through the red tape and bullshit that’s often put out in press releases, as well as the hodgepodge and hocus pocus from various sources, including governmental agencies and bodies.

What do you like about this subject?

Through my work with Awake In Philly and Awake In America, I hope to assist and reach as many as possible, but through those groups, I’ve already had an impact on international levels, providing sound resources, information, and contacts, to individuals, health care providers, and government and elected officials in several countries.

What do you still hope to learn or achieve?

I expect to see, through the diligent, persistent, and consistent efforts of myself and many others committed to the cause, who are not motivated by profits or greed, a national awareness of sleep disorders and sleep deprivation.

Something interesting about this subject that others may not know:

I’ve been responsible for helping create awareness at local and state levels, in Philadelphia, in Pennsylvania, as well as other areas, by working with elected and government officials to have proclamations issued. I’ve also been involved in many projects with state and federal agencies, pushing for more programs focused on sleep and sleep disorders.

Something controversial or provocative about this subject:

What would it take more stories on sleep disorders into the mainstream media, say the same number of stories as there are about breast cancer or diabetes?

• Fact: It’s estimated that more than 20 million people in the United States, alone, suffer sleep apnea.
     That’s at least the same number of people who suffer diabetes. Let’s work to get the word out.
• Fact: In the 1960s, medical professionals were struggling to get the word out about this health issue called "diabetes."
     Today, it is estimated that around 18 million Americans have diabetes. That’s about two million fewer than those who suffer sleep apnea.
• Fact: Without people getting involved, working toward a common goal, nothing ever changes.
     If you want to be a part of the problem, sit back and do nothing. If you want to be part of the solution, get involved.

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