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Greg Page On Gma


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nice to see him back! wonder what his secret is? so he just had orthostatic intolerance (is it right that they say its just a cardiovascular illness)? he did not have any autonomic dysfunction? see this is where I get so confused about this syndrome. I have been diagnosed with all 3....orthostatic intolerance, POTS and autonomic dysfunction....... subcategories of dysautonomia....... or so explained to me by my specialist

Bren

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you know, I truly am glad that he is better.....I am, but, I wish he would use his public status to bring more awareness to his illness. I saw Dr. Oz in the beginnning of the segment and wish that they ABC would have followed up with a segment on Greg's orthostatic intolerance/dysautonomia. I know that he has set up a fund but don'tt know exactly has come out of that

liz

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Bren,

In regards to what you posted, my understanding of all the terms is that there are several conditions that fall under the broad category of "dysautonomia" or "autonomic dysfunction". "Orthostatic intolerance" is a type of "autonomic dysfunction", where the body has trouble responding to/regulating itself in regards to upright posture, hence the "orthostatic" part. Orthostatic intolerance can result in a condition like "orthostatic hypotension" , where your blood pressure drops when you stand up, or it can result in syndromes like POTS where your blood pressure may stay normal when upright, but your heart rate goes up. So they're not exactly 3 different diagnoses, but kind of more specific ways of describing the autonomic dysfunction. At least that's how my Dr. explained it to me..

The kind of autonomic dysfunction I seem to have is orthostatic intolerance, but I don't have orthostatic hypotension, but rather the high heart rate and collection of symptoms associated with POTS, so that's a more specific way of referring to it I guess. Then there are some autonomic symptoms I have that aren't always typical of POTS, but just fall under the general umbrella of some type of autonomic dysfunction, cause it just means my neuro system is wacky and not functioning as it should. Ha, don't know if I explained that coherently at all, but that's how it was explained to me.

As for just calling it a cardiovascular illness, ha, I don't know that that's correct, or you could at least say the jury is still out on that. Followers of the Levine protocol/theory might think so, but I personally don't think that's the case, at least not in my situation, it definitely seems neurological and more autonomic dysfunction related, than just a heart thing that can be fixed by addressing the heart and it's symptoms. For me, there's a lot of other autonomic symptoms like bladder/bowel issues, visual/vestibular issues, etc... My doctors, as well as other things I've read, have all said that it's the autonomic dysfunction causing the heart symptoms and not the other way around. My guess is that perhaps there might be different subsets of POTS/orthostatic intolerance patients... so maybe for a small group, addressing the heart fixes things, but for others, that's not the case.

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As for just calling it a cardiovascular illness, ha, I don't know that that's correct, or you could at least say the jury is still out on that. Followers of the Levine protocol/theory might think so

Speaking of Levine... what would he say about Greg Page? How could he possibly have been deconditioned - he's a Wiggle for goodness sake.

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Thanks caterpilly :) for clearing some of that up for me......I agree with you for me it is far more than cardiovascular symptoms. In fact I asked my specialist once why even when the OI isnt so bad why I still feel so sick? He said that's POTS and the autonomic dysfunction which I guess for me are far worse than the OI :(.... complicated......

Bren

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Naomi,

Ha, yeah, I'm sure a Wiggle would have a very conditioned heart that's large enough to support all that Wiggling'-)

Bren,

Yeah, my case is somewhat similar it sounds. My heartrate increases for ex, arent that severe, and arent always consistent, sometimes they catch it, sometimes they don't. Yet despite the fact testing doesn't pick up things that are "severe", my symptoms are severe as they have grown worse each year and continue to limit my functioning, and I'm now to the point where I can't work or drive. My doctor said too that severity of symptoms doesn't always have to correlate to the clinical OI findings, and that for me it's just the resulting syndrome that's probably throwing me off. That, and maybe that I also probably have CFS.

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that's interesting caterpilly....I also probably have CFS according to the rheumy.....we sound very much alike :) my symptoms rarely correlate to anything they are all over the map one minute to the next ..... I really think all of this stuff is just part of a larger picture nobody has stumbled on yet.......

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Liz,

I totally agree with you. I am glad to see that Greg is better but I would like to see what happens between shows and even the scheduling of his appearances. I know that I can appear happy and healthy for a small amount of time but I have to rest the whole next day. Just saying that maybe he is better but I don't believe that a miraculous total healing has happened. Exposing the true nature of his life would be better that the show business hype.

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so I just rewatched that interview and this is the last year of the touring....she said 3 of the wiggles are retiring except for the blue one? so technically he is only touring with them for a year... a farewell tour..if he is healed why retire?.......I am like you Ginger I wonder if he is completely healed?.....although if you only have OI and not POTS and not autonomic dysfunction then maybe you can heal?......who knows .......

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I want to believe that he is totally healed not only because it gives me hope but because being a preschool teacher I LOVED the Wiggles. But somehow I just don't buy it. Like you said, he is only touring for a short while and you don't know what is going on in between shows.

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We've been following his story pretty closely this year.

For one, he was only asked to return for one year. Based on how things panned out bit by bit, it seems likely the group knew among themselves for some time this was a final hurrah year for two of the three remaining. They couldn't come to terms with Sam (who had taken Greg's place) based, I believe, on his request for more money and then they had this opening; Greg was doing better, and they asked him to come along. He was only ever asked to sign on for one year; it had nothing to do with his health.

In everything else I've read and seen, Greg never states he's been fully healed. Even in this video he only says he's "on top of his health." What he has said, over and over again, is that his condition is *controlled*. Yes, he's been able to come off of medication, but he does still have to take care of himself - and he's spoken to this many times - and he has been closely monitored by his doctor, who last I heard was pleased with his progress. Jeff says "the biggest miracle is that Greg is feeling better." There's a big difference between being healed and feeling better.

This is what Greg has to say at GregPage.com about his condition:

"My health is much better now due to having a greater understanding of the disorder (Orthostatic Intolerance) and how to manage it appropriately. It is not a curable condition and will always be with me, however, arrangements have been made for it to be managed, to the best possible extent, throughout my period with The Wiggles in a way that will enable me to Wiggle once again and deliver quality children's entertainment for audiences all over the world."

I have noticed, among other things, that his page still remains incomplete even though many, many months ago he wrote about it being done soon. My personal suspicion is that part of managing the disorder for him means, as it does for all of us, choosing where and how to spend his energy, and that he has to choose to let some things just go for a while. Fortunately for him, he has a lot more energy than most of us right now...but the demands of touring are surely taxing for him.

Personally, I've been delighted to see that he has been so open and honest about everything, even if he's not actively crusading for a cure or awareness instead of Wiggling for a year. My daughters watched the Wiggles - with Greg Page - when they were tiny, and now that my 10 year old's POTS symptoms sometimes rival my own, she's been especially encouraged to hear his story, to know someone out there to whom she relates (or did, years back) "gets" this, and to see that he has been able to get his symptoms under some control, at least for now.

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I don't know what to think about it all. He is obviously feeling better because he stood for that TV segment and then it looks like they played a song... I would have been a mess. Touring messes up healthy people. You see singers all the time having to cancel because they get sick on tour and can never recover properly. I really do not know how he is doing it without meds. Good for him. I'm jealous.

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Well written Humble Pie. I am so happy he is managing well enough to have this last professional hoorah with The Wiggles. I am so happy to hear stories like this one where a person with a chronic illness is willing and able to take the steps to reach a goal and it is seen by others.

For me last year it was being the room mom in my sons Kindergarten class, the year before it was raising money with my family for our local Bark for Life. We all do amazing things and its so nice to see someone be recognized for how difficult it can be and how strong we are to do it!

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greg page has told people in Australia recently that he believes his OI was caused by losing too much salt and was virtually corrected with Florinef.

As for just calling it a cardiovascular illness, ha, I don't know that that's correct, or you could at least say the jury is still out on that. Followers of the Levine protocol/theory might think so, but I personally don't think that's the case, at least not in my situation, it definitely seems neurological and more autonomic dysfunction related, than just a heart thing that can be fixed by addressing the heart and it's symptoms. For me, there's a lot of other autonomic symptoms like bladder/bowel issues, visual/vestibular issues, etc... My doctors, as well as other things I've read, have all said that it's the autonomic dysfunction causing the heart symptoms and not the other way around.

I dont really accept that the majority of doctors believe POTS is primarily a cardiac disease and I doubt even Dr Levine and his team still do. the fact that execise helps doesnt tell us much other than exercise helps :)

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