Getting Madder by the Minute

[Polar Bear]

And would it be possible for the like of a short video to be on U-Tube and so be seen by folks desperate for help and maybe just googling symptoms ?

[ViewsAskew]

Indeed it would! If it's well done, it could go viral and be forwarded around the world .

[Polar Bear]

That would be wonderful.
And it would be possible then to send emails to suitable and relevant parties, to clinics etc with a link. Put it on Facebook, put it on our personal FB pages and 'share'... -

[ViewsAskew]

My hubby LOVES to do video work...but I really don't want to be a subject, lol.

We could have clips of different people, but I think one person would be compelling. Missing work - calling in sick, maybe; pacing and doing yoga and weird sleep positions at 4 AM; sending texts to the wrong people at 6 AM; going to the doctor and having him/her say that can't help you; have a pharmacist refuse to fill your medication; having the doctor ask you what you've tried and listing 15 medications....oh, the many things we could put in it!

[pamndorr]

I am willing to help with anything also. I have written twice to Dr. Oz and no luck and I wrote to Ellen with no luck. Maybe if we all pick a talk show that we agree might help to get the word out and we all write at the same time...bombard them with letters and then maybe they would get a clue to help us...just a thought.

Or how about a flash dance thing that is going around all over the world to call attention to different things. We could all meet up someplace and just break out dancing and singing...that would get some peoples attention. I think it is a matter of making people see us and that we are real and this disease is real. Just need to come up with a song and somebody chorograph the dance.. I am sure I just spelled that wrong. I actually grew up with a guy that does that..he always chorographs the Macys Thanksgiving Day Parade where they escort santa in..he lives in New York..but you never know he might be willing to help out....if not him I am sure somebody would help us. Shoot there has to be somebody on this site that has the abiltiy to do that..right? Not that I can actually imagine my fat body jumping up and down and dancing....but at one time in my life I loved to dance and do all that stuff...I could do it again...

One thing about no sleep...lots of time to think and plan.

[badnights]

One thing about no sleep...lots of time to think and plan.

How I wish I could think without sleep! I find I can't do anything useful, sometimes because I'm not getting enough sleep and other times apparently because I've lost the ability to think clearly and analytically.

[badnights]

I told Dr Pawluk when I saw him last week about our dual desires, to educate specialists to treat WED properly and to educate non-specialists to be familiar enough with WED to refer patients properly. I will try to summarize his answers here. I have already forgotten things, apparently, because some of my notes are puzzling

Big-name speaker - His first and immediate response was that big-name (he said outstanding, I think), internationally known researchers draw crowds. If money were no object, the ideal scenario would be a speaker tour. In each city, the Big Name would give a presentation, followed by a workshop during which the people too shy to ask questions during the presentation can get things clarified. This would be followed that evening by a lecture open to the public. The media cover the public lecture, which not only makes the public aware but makes specialists aware of the associated presentation and workshop.

Before rejecting the idea out of hand, I am thinking of a website with short you-tube-like videos (patients stories, doctor interviews, all less than 5 minutes) that accepts donations, which can go specifically to raising enough money for a small speaker tour hitting a few selected cities. (There should be a rockin' viral video on YouTube as well. Pointing to the donation page ) We probably need a better idea than this, needless to say. I want to keep the idea of a speaker tour alive, despite the current lack of funding, because Pawluk was so immediate and sure with this response.

(Aside: The beginning of the video webpage idea is in the Hyperalterness/glutamate-study thread - viewtopic.php?f=5&t=8077. I wanted to document a patient's (my) participation in that study, and to tape interviews with WED specialists to go with it, and then try to get physicians and the public to view it. I never continued the story on that page, but I arranged to meet with a young guy I know who is doing journalism and who studied film-making, to ask about making youtube videos or even a documentary. He suggested we do a web page instead, with short videos, where also people could submit their own videos to be uploaded, and could even donate. I envisioned donations to a research unit, but they could go to a speaker tour instead. ANYWAY.)

OK, more responses Dr Pawluk made:
Webinars - My notes here are not good. Present/create them in association with AASM (American Assoc of Sleep Medicince) and/or RLSF (!!)
He mentioned the Association of Canadian Family Physicians - I think, to advertise the webinars through them (and similar American organizations). He said that most GPs have areas of medicine that are of special interest to them, and some that have a special interest in sleep medicine would attend a webinar.

CME - (continuing medical education: courses for physicians so they can stay up to date) - is not difficult per se, but takes time and effort to get the course certified, which requires someone to spearhead it. (I am paraphrasing here.)

Newsletters - I asked about polar bear's idea of submitting an article to physician newsletters. He said that was good. There is an Alberta Health Services newsletter, and probably similar things in other provinces, states, and countries. So this is clearly something we should look at. We have to figure out what would best achieve our goals: an article written by a physician? by a patient and co-authored by a physician? eg. like article Cornelia got published (viewtopic.php?f=5&t=8149)? I think it might work best to have something written by a specialist and directed at a GP, but sensitively mentioning the major issues patients have (physician understanding, quality of life, etc).

Journal articles - He thought the Canadian Medical Association journal would probably publish an article on current best-practices treatment of WED/RLS. The fact that Pawluk mentions this highlights (to me) a need to move Dr. B's work and/or similar work to a place where it will reach a broader audience. (I am speaking of Dr B's recent paper on RLS/WED treatment, published in Neurotherapeutics). A problem is that probably the same paper can't be published in multiple journals. Not sure how the medical world works, but in the geological world, papers are sometimes modified slightly in order to be published in a different journal. It tends to be frowned upon but sometimes there is a good reason. If that was acceptable in the medical world, maybe 2-3 more versions of Dr B's paper could be published in 2-3 countries, in general-interest physician journals, as opposed to the specialist journal it was already published in. We could ask Dr B about these and any other issues (eg. maybe the broader-interest journals rejected the paper already).

That's as much as I probed, he seemed kind of interested in this, maybe he would help out more ?? maybe he would be willing to write something?

[ViewsAskew]

Great work, Beth!

[Polar Bear]

Great Beth.... you have really been rooting for us/WED

[badnights]

The new Foundation website is a great improvement on the old one!

And it reveals a host of things they must have been working on the last couple of years. One of my big favorites is this:
http://www.willis-ekbom.org/quality-care-program

The Quality Care program is up and running. It will establish Willis-Ekbom Quality Care Centers, so long as people apply! Either individual physicians, or groups of them under the banner of the same clinic, can apply for the same fee. Some people have gone to a great deal of trouble to decide what criteria can be used to evaluate a doctor's ability to treat WED; and I think they did a good job (from the point of view of the patient concerns I see addressed here most, including dealing with refractory and severe patients, use of opioids, treatment of augmentation and impulse control disorders, and availability of follow-up after a change in meds has been made). The criteria can be read by downloading the physician's application form.

Once people register for this, we will be able to find them, and be at least a bit more assured than we have been that we really are getting someone who can treat RLS/WED.

The only low-light was searching for my own Support Group in NT. I haven't had a meeting yet, so I didn't expect to be listed there as a support group yet, but I am fully ready to be a contact, and wish my contact data were available to people.

Anyway, check out the program they've worked for at LEAST two years on. I just gave them a small donation to be earmarked for the
QC program.

[rthom]

I agree whole heartedly about the new website. I just went to the local printers and printed a bunch of stuff off of it tonight and a few things I got laminated. That way I can remind myself every week or so of what I should be paying attention to. I really like the pages that are interactive like the one that is a sleep diary, the medic alert etc... I cannot remember them all, and I some of these were there before (but I'm outside in the garden planting so I cannot go see easily--P.S. its 4am here--and it's really cool that I can garden, watch a movie and be on here at the same time- )anyway some of these I have suggested others take a look at in order to help assess their own sleep.

Anyway--way to go WEDF!
And Badnights for reminding us to re-visit it

[badnights]

I see I used the wrong words and phrases occasionally in that post... posting while zopicloned again. Sorry! At least the main points were clear.