RLS Foundation hosting a Patient Symposium

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Polar Bear
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Re: RLS Foundation hosting a Patient Symposium

Postby Polar Bear » Sat Aug 25, 2018 10:06 pm

Dreams are what keep us going. :D
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Yankiwi
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Re: RLS Foundation hosting a Patient Symposium

Postby Yankiwi » Mon Aug 27, 2018 7:54 am

Too far for me too—6,500 miles—but it will be wonderful to hear about it.

jewelsong
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Re: RLS Foundation hosting a Patient Symposium

Postby jewelsong » Tue Aug 28, 2018 12:32 am

Speaking of hearing about it ... will there be recordings or transcripts of the talks available afterwards on the website? For multiple reasons, I will not be able to attend.
Blessings to all of you. Reading your stories and wisdom keeps me sane with this wretched disease.

Rustsmith
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Re: RLS Foundation hosting a Patient Symposium

Postby Rustsmith » Tue Aug 28, 2018 12:44 am

jewelsong, that is a good question. I will call the Foundation office tomorrow and let you know what they say.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: RLS Foundation hosting a Patient Symposium

Postby Rustsmith » Thu Aug 30, 2018 6:34 pm

I have been told that due to budget constraints, they are not currently planning to record or transcribe the proceedings. They are also not planning to make the slides available.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Re: RLS Foundation hosting a Patient Symposium

Postby ViewsAskew » Thu Aug 30, 2018 9:47 pm

Rustsmith wrote:I have been told that due to budget constraints, they are not currently planning to record or transcribe the proceedings. They are also not planning to make the slides available.


Too bad. Would be nice if there were some less expensive recording and storage options.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Yankiwi
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Re: RLS Foundation hosting a Patient Symposium

Postby Yankiwi » Sat Sep 01, 2018 4:34 am

Our discussion board attendees can give us a rundown.

sleepdancer2
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Re: RLS Foundation hosting a Patient Symposium

Postby sleepdancer2 » Sun Sep 02, 2018 8:46 am

Anyone in Los Angeles making the 2+ hour drive down?
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ViewsAskew
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Re: RLS Foundation hosting a Patient Symposium

Postby ViewsAskew » Thu Sep 06, 2018 4:38 am

sleepdancer2 wrote:Anyone in Los Angeles making the 2+ hour drive down?


I am in LA and am thinking about it. Given how crazy my legs can be, I am getting averse to scheduling things...
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Rustsmith
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Re: RLS Foundation hosting a Patient Symposium

Postby Rustsmith » Thu Sep 06, 2018 2:59 pm

For what it is worth, I am planning to fly to San Diego to attend the symposium. I will try to take notes and post a brief summary upon my return home.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Oozz
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Re: RLS Foundation hosting a Patient Symposium

Postby Oozz » Thu Sep 06, 2018 5:29 pm

Is this the first symposium? I’m wondering what will be covered that isn’t readily available online...

Rustsmith
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Re: RLS Foundation hosting a Patient Symposium

Postby Rustsmith » Thu Sep 06, 2018 6:46 pm

This isn't the first patient conference, but it is the first one in a long time. As for what will be covered, most of info in the presentations is probably already available either through the research papers, Nightwalkers, the webinars or even You Tube. What will be most interesting, at least to me, will be the interaction between the participants with RLS and the doctors/researchers, especially during the breaks and meals. Drawing from my experiences at my professional conferences, this is when the really interesting conversations happen. In these "social" conversations, the doctors are free to talk in speculative terms and say things like "I think ....", which they cannot do in print. As for patients, you never know when one of us says something followed by others agreeing, which tells the doctors something they didn't know before. An example might be something like a "conversation" we had here a number of years ago about how many of us can stand to touch things that are hotter than others, or immerse ourselves in water that others find to be "scalding". I know that one question that I want to ask Dr Ferre is what sorts of currently used meds, other than dipyridamole, that he thinks might also be helpful. This interests me because I suspect that my low heart rate and low blood pressure would make me a poor candidate for dipyridamole.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sleepdancer2
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Re: RLS Foundation hosting a Patient Symposium

Postby sleepdancer2 » Fri Sep 07, 2018 6:48 am

@ViewsAskew Do you live in LA now? I hear you about it being hard to plan.

@Rustsmith I think I would thoroughly enjoy this meeting. The interactions you describe appeal to me a lot. I have always wished more doctors could know a couple things about my journey, as it could possibly help someone somewhere. #1 That after getting past augmention and getting of the DAs that my legs are controlled by using TENS. and #2 That abrupt stopping of a DA from a high dose caused synesthsia. Patients who are the outliers seem to get lost in the mix.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: RLS Foundation hosting a Patient Symposium

Postby ViewsAskew » Tue Sep 11, 2018 5:33 am

sleepdancer2 wrote:@ViewsAskew Do you live in LA now? I hear you about it being hard to plan.

@Rustsmith I think I would thoroughly enjoy this meeting. The interactions you describe appeal to me a lot. I have always wished more doctors could know a couple things about my journey, as it could possibly help someone somewhere. #1 That after getting past augmention and getting of the DAs that my legs are controlled by using TENS. and #2 That abrupt stopping of a DA from a high dose caused synesthsia. Patients who are the outliers seem to get lost in the mix.


Yes, I do.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Oozz
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Re: RLS Foundation hosting a Patient Symposium

Postby Oozz » Mon Oct 01, 2018 11:32 pm

So, who is gonna debrief us on all the cool stuff that was discussed at the symposium? :D


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