Did anyone watch the Oprah show today??? It was about sleep disorders and mostly covered night terrors. Whew!!! Those folks really go thru alot while sleeping.
I kept watching HOPING that maybe RLS would be part of the show, but of course that didn't happen, so I was wondering IF anyone knew of someone on the RLS Foundation board that might contact The Oprah Show and ask that Dr. OZ do a piece about RLS! Dr OZ has become a regular on her show, covering so many interesting medical info. In my opinion it would be just what the RLS Foundation could use to help inform the population and the medical field about RLS. I doubt that just regular RLSer's emailing the show would work, but I would think that MAYBE, a RLS Foundation Dr. or board member might be able to get something done by Dr. OZ.
Comments anyone?
Oprah & Dr. OZ
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SquirmingSusan
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That would be great, Mack. But first we'd have to get him educated about RLS. In his latest book, "You, Staying Young," he really shows himself to be ignorant on the topic. On p. 192 there's a table of sleep disorders and sleep drugs to match. He writes:
OK, let me count the mistakes! RLS is not the same as PLMD. And RLS is not the same as muscle cramps.
Oh, and on p.194, he writes:
Alrighty then! We certainly have enough problems with misinformation floating around without the great Oz going on Oprah and spreading more. That said, I'm sure he's teachable, and it would be fun to get some accurate information out there that people are likely to pay attention to.
Is this you? You kick so much that you're considering trying out for the Chicago Bears.
Try: Requip
Why: This drug helps with restless legs syndrome. But a first option is just drinking a little diet tonic water at dinner. It contains quinine - an ingredient that helps quiet muscle cramps.
OK, let me count the mistakes! RLS is not the same as PLMD. And RLS is not the same as muscle cramps.
Oh, and on p.194, he writes:
...and up to 30 percent of people over fifty have restless legs syndrome - the periodic movement of limbs during deep sleep.
Alrighty then! We certainly have enough problems with misinformation floating around without the great Oz going on Oprah and spreading more. That said, I'm sure he's teachable, and it would be fun to get some accurate information out there that people are likely to pay attention to.
Susan
I thought the sleep terror thing was interesting too. My daughter has nightly horrific nightmares so I made sure I was home to watch it. I was disappointed Dr Oz didn’t talk more about what can be done to stop them though.
Susan I agree with you. I watched the show and thought his insights into sleep disorders were shallow and unhelpful. I used to like Dr Oz. He’s entertaining and I’ve learned some interesting things. However I would much rather see Oprah interview Dr. Buchfuhrer about RLS. Now if Oprah would have him on that would be awesome!
What bothered me most was Dr. Oz’s evaluation of the poor lady who hadn’t slept for 4 days. They showed tapes of her tortuous nights and days. His advice was to improve her sleep hygiene, such as getting up at the same time every day even if she hadn’t slept much. He also suggested she should only go to bed 15 minutes earlier each night – to gradually increase the time she slept. Sheesh! That poor woman needed some medical attention by an expert sleep specialist! I felt like he was telling her to go home and sleep. His ignorance made me sad for all of us RLSers who can’t sleep and have docs who haven’t a clue. It calls to mind the day when my sleep doc looked me in the eye and said they can kill lab mice with sleep deprivation. Fortunately he takes my sleep deprivation very seriously, and knows that it’s a critical problem that must be aggressively addressed. It’s not just a passing inconvenience that can be fixed with changing habits.
Sorry – just a wee bit of venting here. Dr. Oz got on my bad side yesterday.
Eliza
Susan I agree with you. I watched the show and thought his insights into sleep disorders were shallow and unhelpful. I used to like Dr Oz. He’s entertaining and I’ve learned some interesting things. However I would much rather see Oprah interview Dr. Buchfuhrer about RLS. Now if Oprah would have him on that would be awesome!
What bothered me most was Dr. Oz’s evaluation of the poor lady who hadn’t slept for 4 days. They showed tapes of her tortuous nights and days. His advice was to improve her sleep hygiene, such as getting up at the same time every day even if she hadn’t slept much. He also suggested she should only go to bed 15 minutes earlier each night – to gradually increase the time she slept. Sheesh! That poor woman needed some medical attention by an expert sleep specialist! I felt like he was telling her to go home and sleep. His ignorance made me sad for all of us RLSers who can’t sleep and have docs who haven’t a clue. It calls to mind the day when my sleep doc looked me in the eye and said they can kill lab mice with sleep deprivation. Fortunately he takes my sleep deprivation very seriously, and knows that it’s a critical problem that must be aggressively addressed. It’s not just a passing inconvenience that can be fixed with changing habits.
Sorry – just a wee bit of venting here. Dr. Oz got on my bad side yesterday.
Eliza
Well I'm just going to have to chime in here on a couple of things.
Nope Missed and will miss most anything Miss Oprah does or did on her show, sorry, don't watch her anymore.
1. We have at different times emailed the O show in mass trying to get her to give it some air time, that being in the 4 yrs I've been here. With no response and no care from the show. So, it has been tried many, many times and we get NO WHERE with her show.
2. THE FDA put out a warning about Quinine and leg cramps. It's in the Non-Pharm section:
http://bb.rls.org/viewtopic.php?t=3918& ... ht=quinine
Read it and be careful in the dosing if used.
3. Night terrors. My youngest had them and it was awful. We did not know what happened at the time and our doc assumed that because I had been a sleep walker (horrible) as a child, that this was how it came to be for my son.
When it would happen, it was a sound that makes a mother's skin crawl and I'd run in there and he would act awake, but clearly was not.
I had many times (as a kid), that I appeared awake if mom or dad checked on me, but I was totally asleep. EYES open and asleep. But, my poor son would just freak out
and it would take a while to calm him or worse he would wake up in that terror stage and not know why. it went away by the age of 4-5 and lessened each year.
4. Sleep deprivation must become a major issue for us to fight, for ourselves. It's distruction to our well being and our health is awful and I agree Eliza, not enough is done about it.
BTW
Glad to see you back.
Lynne
Nope Missed and will miss most anything Miss Oprah does or did on her show, sorry, don't watch her anymore.
1. We have at different times emailed the O show in mass trying to get her to give it some air time, that being in the 4 yrs I've been here. With no response and no care from the show. So, it has been tried many, many times and we get NO WHERE with her show.
2. THE FDA put out a warning about Quinine and leg cramps. It's in the Non-Pharm section:
http://bb.rls.org/viewtopic.php?t=3918& ... ht=quinine
Read it and be careful in the dosing if used.
3. Night terrors. My youngest had them and it was awful. We did not know what happened at the time and our doc assumed that because I had been a sleep walker (horrible) as a child, that this was how it came to be for my son.
When it would happen, it was a sound that makes a mother's skin crawl and I'd run in there and he would act awake, but clearly was not.
I had many times (as a kid), that I appeared awake if mom or dad checked on me, but I was totally asleep. EYES open and asleep. But, my poor son would just freak out
and it would take a while to calm him or worse he would wake up in that terror stage and not know why. it went away by the age of 4-5 and lessened each year.
4. Sleep deprivation must become a major issue for us to fight, for ourselves. It's distruction to our well being and our health is awful and I agree Eliza, not enough is done about it.
BTW
Glad to see you back.
Lynne
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Well chalk up Dr. OZ. I have never read his book, so had NO ideal he was not up to date on RLS.
Yes I know that many have emailed the Oprah show about an RLS show, but maybe IF the RLS Foundation would approach her, rather than her recieving emails from so many RLSers she might be more inclined to do a show about educating folks on RLS. Maybe they could contact Dr. Phil show, he also does informative type shows. WE need something beside the silly commercials on TV. Yes those are better than the nothing we did have, but still they do not give enough details of RLS.
What I have not be able to understand is WHY the RLS Foundation has not tried to find a TV program that would give them a chance to really go into details about RLS and to clear up all the miss understandings about RLS and to make sure that people understand the difference between RLS and PLMD. I continue to see so many new folks come to the message board describing PLMD and saying they were diagnoise with RLS.
I am also so shocked to see Drs still recommending quinine for RLS, I thought that was taken off the shelves and was considered dangerous and of course it does not help RLS.
Just a few more reasons we need a indepth show about RLS and PLMD!!
Yes I know that many have emailed the Oprah show about an RLS show, but maybe IF the RLS Foundation would approach her, rather than her recieving emails from so many RLSers she might be more inclined to do a show about educating folks on RLS. Maybe they could contact Dr. Phil show, he also does informative type shows. WE need something beside the silly commercials on TV. Yes those are better than the nothing we did have, but still they do not give enough details of RLS.
What I have not be able to understand is WHY the RLS Foundation has not tried to find a TV program that would give them a chance to really go into details about RLS and to clear up all the miss understandings about RLS and to make sure that people understand the difference between RLS and PLMD. I continue to see so many new folks come to the message board describing PLMD and saying they were diagnoise with RLS.
I am also so shocked to see Drs still recommending quinine for RLS, I thought that was taken off the shelves and was considered dangerous and of course it does not help RLS.
Just a few more reasons we need a indepth show about RLS and PLMD!!
All I know is, if you get RLS on Oprah's show, it better be an accurate depiction, because too many people think Oprah is God and that what she presents is pure, incontrovertible Truth. If she or her doctor person talk about RLS and make mistakes, those mistakes will get burned into millions of minds and will be difficult to correct.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
Mack it's coming. I promise, it's coming. We will have our day.
The foundation always tries to interest people in the truth and offers up proof and persons to provide not only the medical side of things, but one of us, so that the human side is shown.
I do think that when this board is active and motivated, we have proven that we can make a positive difference for ourselves.
So any proactive people lets think about it, even if it's not O, what can we do to help promote the truth ourselves?
What we dream we can make happen. We have done it before and can certainly do it again.
Lynne
The foundation always tries to interest people in the truth and offers up proof and persons to provide not only the medical side of things, but one of us, so that the human side is shown.
I do think that when this board is active and motivated, we have proven that we can make a positive difference for ourselves.
So any proactive people lets think about it, even if it's not O, what can we do to help promote the truth ourselves?
What we dream we can make happen. We have done it before and can certainly do it again.
Lynne
Great posts. Just another chapter in "almost" news by an "almost" good investigator, Oprah. Unfortunately, "almost" news is worst then real news as becat and Aiken say. I love how Oprah helps the poor and Africa but she has gone overboard too many times with this New Earth stuff:
http://newsweek.washingtonpost.com/onfa ... iritu.html
and the Secret:
http://www.alternet.org/movies/49591/
and stuff before that...
But I'm not anti-Oprah or her new Oprahanity
. I applaud her more then scorn her so I'm up for any PR she's up to give, but she seems to be surrounded by so many pop culture guru's can the RLS truth get to her so, llike Aiken said, it won't be filtered thru her ego and morphed from the turth?
http://newsweek.washingtonpost.com/onfa ... iritu.html
and the Secret:
http://www.alternet.org/movies/49591/
and stuff before that...
But I'm not anti-Oprah or her new Oprahanity
. I applaud her more then scorn her so I'm up for any PR she's up to give, but she seems to be surrounded by so many pop culture guru's can the RLS truth get to her so, llike Aiken said, it won't be filtered thru her ego and morphed from the turth?
Ok, to be nice I should have said I like her for many years.
Yes, did does so mauch for so many, very giving, she just changed of the years to me.
I do think she does some fine work.....I just know how many times we took it upon ourselves to to fill thier emails at once, and never heard a thing.
If anyone ever gets a response, I do recommend that you direct them to our Media girl (great girl BTW), and she will make sure to make the most of it.
I think if we used Sleep deprivation as the big to do and what it has done to our lifestyle in mass or overall, we get a better spin right now.
Insomnia is now a hot topic.
Lynne
That's a really good point, Lynne.
I mean, really, that's such a huge part of what it's about, probably the majority of the problem for most of us. Plus it's 100x easier for a normal person to identify with sleep deprivation than, say, "my legs feel so weird that I want to cut them off." Almost everyone's been at least somewhat sleep-deprived at some point.
I'm actually remembering your sleep-deprived interview. That sort of sense of... oh, I don't know, kind of like a broken coffee cup held together with sticky tape, which nevertheless has to hold coffee day in and day out... that makes a real impression in a way that describing "jimmy legs" can't.
I mean, really, that's such a huge part of what it's about, probably the majority of the problem for most of us. Plus it's 100x easier for a normal person to identify with sleep deprivation than, say, "my legs feel so weird that I want to cut them off." Almost everyone's been at least somewhat sleep-deprived at some point.
I'm actually remembering your sleep-deprived interview. That sort of sense of... oh, I don't know, kind of like a broken coffee cup held together with sticky tape, which nevertheless has to hold coffee day in and day out... that makes a real impression in a way that describing "jimmy legs" can't.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
Thank you Aiken, I can still have one in my old age! 
The whole point of fighting in mass one major problem at a time, is our voice just gets bigger! Louder.
Sleep deprivation is maybe one of the most common side effects of RLS.
Hook: Sleep Deprivation.
Sink: How we approach it and who we approch.
Line: What if you knew that we had a community this size, and this board membership's is a small percentage, all had the hot topic, most sommon side effect.
Sinker: Land the Foundation an interview. or notify and copy them on your stories. (I would still beg that Quality of Life works come to me! Pretty Please?
Get an article, anywhere, with real facts, personal insights, and then share!
Lynne
The whole point of fighting in mass one major problem at a time, is our voice just gets bigger! Louder.
Sleep deprivation is maybe one of the most common side effects of RLS.
Hook: Sleep Deprivation.
Sink: How we approach it and who we approch.
Line: What if you knew that we had a community this size, and this board membership's is a small percentage, all had the hot topic, most sommon side effect.
Sinker: Land the Foundation an interview. or notify and copy them on your stories. (I would still beg that Quality of Life works come to me! Pretty Please?
Get an article, anywhere, with real facts, personal insights, and then share!
Lynne
Oh, boy! Sleep deprivation. I could be the poster child (not that I'm the only one!)!!! I've come to believe that IF I get three hours' sleep in a row and am only up two times in the night (maybe an hour each time), that's a GOOD night for me. If you read my thread "What Do we Do?", you'll understand my frustration and the effect sleep deprivation has on me.
And, I LOVE the advice given after a sleep study (which I had--my 3rd one--in November, 2007). Sleep hygiene--I should improve my sleep hygiene. It was exactly as Eliza said. They suggested that I do certain things, like go to bed at the same time or even start my bedtime earlier in increments of 15 minutes every 3rd night or so. Make sure the room is dark and cool enough. Don't take naps during the day. Yada, yada, yada.......
Lynne, remember you and I talking before my colonoscopy and you said at least I'd get a good sleep out of it afterwards because of the anesthesia? Well, guess what?! I slept maybe two hours that day after the test. When my husband his his, he slept all day.
I agree with Lynne. Together we make one HUGE fist. We have done it before and we can do it again. We can scream loud enough that they'll hear us.
I didn't see this particular segment of the Oprah show ( depending on the day it was shown, I was still at work). But, I do know that we've sent her emails on RLS, en masse, and nothing....absolutely nothing was heard from her or her team. But, sleep deprivatoin? That's something many people have who don't have RLS. It's worth a try.
Jan
And, I LOVE the advice given after a sleep study (which I had--my 3rd one--in November, 2007). Sleep hygiene--I should improve my sleep hygiene. It was exactly as Eliza said. They suggested that I do certain things, like go to bed at the same time or even start my bedtime earlier in increments of 15 minutes every 3rd night or so. Make sure the room is dark and cool enough. Don't take naps during the day. Yada, yada, yada.......
Lynne, remember you and I talking before my colonoscopy and you said at least I'd get a good sleep out of it afterwards because of the anesthesia? Well, guess what?! I slept maybe two hours that day after the test. When my husband his his, he slept all day.
I agree with Lynne. Together we make one HUGE fist. We have done it before and we can do it again. We can scream loud enough that they'll hear us.
I didn't see this particular segment of the Oprah show ( depending on the day it was shown, I was still at work). But, I do know that we've sent her emails on RLS, en masse, and nothing....absolutely nothing was heard from her or her team. But, sleep deprivatoin? That's something many people have who don't have RLS. It's worth a try.
Jan
No one is alone who had friends.
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
The media and mass emails
remember how many times we have sent mass emails to people who made fun of RLS, and the mass emails asking Oprah to tell our story. Well how many have we heard back from?? Very few, maybe one or two, so that should tell us that mass emails are not working for us.
I still think that a Dr or board member of the Restless Legs Foundation, should be the one to contact a show such as Oprah and then if offered a show to make SURE that RLS is shown as the true disorder that it is. I know that there are Drs who have RLS, so what better people to be on a show to tell our story. We need creditable (sp) people, sorry but while we all could certainly tell our stories and they would all be true, we just might not be the ones needed to represent RLS. I know for myself, I get a tad carried away when explaining my life with RLS. *L* All of us RLS'ers who have suffered so very long have so much emotions invested in our RLS, I think we might sound really strange on TV. talking about our creepy crawlies, or what ever your name for rls is. *L*
What we need is several Drs. who have done research on RLS and those Drs that also suffer from RLS. We now have such great research info available such as the brain study they did. How interesting would it sound to have a research Dr who actually did the brain research talking about people donating their brains to the foundation and then the actual research done and the findings! WOW what a statement that would make to the world!! IMHO
I still think that a Dr or board member of the Restless Legs Foundation, should be the one to contact a show such as Oprah and then if offered a show to make SURE that RLS is shown as the true disorder that it is. I know that there are Drs who have RLS, so what better people to be on a show to tell our story. We need creditable (sp) people, sorry but while we all could certainly tell our stories and they would all be true, we just might not be the ones needed to represent RLS. I know for myself, I get a tad carried away when explaining my life with RLS. *L* All of us RLS'ers who have suffered so very long have so much emotions invested in our RLS, I think we might sound really strange on TV. talking about our creepy crawlies, or what ever your name for rls is. *L*
What we need is several Drs. who have done research on RLS and those Drs that also suffer from RLS. We now have such great research info available such as the brain study they did. How interesting would it sound to have a research Dr who actually did the brain research talking about people donating their brains to the foundation and then the actual research done and the findings! WOW what a statement that would make to the world!! IMHO