NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Dr.Phil show, help get the word out about RSD (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/51140-dr-phil-help-word-rsd.html)

GJmom 07-31-2008 04:54 PM

Dr.Phil show, help get the word out about RSD
 
I wrote a letter to the Dr.Phil show about RSD. They were looking for medical nightmares. Well I got a call back. I was not expecting this. They said they would get back to me this week. I was thinking maybe it would help if everyone wrote in, so they don't just think it is one person that has this. I think it might make it more real to them, and show interest. I don't really want to be on the show, but my wanting to get the word out about RSD is much stronger then my fear of being on TV. My hope is that if more people know about it we can get more funding, and maybe push for new/more treatments. You can put a mark on the e-mail that says you don't want to be on the show. I'm not sure if it is Dr. PHil or the new show they are doing Ask The Doctors. It does not really matter to me, as long as we can get the word out.
http://drphil.com/

Stacie 07-31-2008 05:26 PM

Quote:

Originally Posted by gjmom (Post 336321)
i Wrote A Letter To The Dr.phil Show About Rsd. They Were Looking For Medical Nightmares. Well I Got A Call Back. I Was Not Expecting This. They Said They Would Get Back To Me This Week. I Was Thinking Maybe It Would Help If Everyone Wrote In, So They Don't Just Think It Is One Person That Has This. I Think It Might Make It More Real To Them, And Show Interest. I Don't Really Want To Be On The Show, But My Wanting To Get The Word Out About Rsd Is Much Stronger Then My Fear Of Being On Tv. My Hope Is That If More People Know About It We Can Get More Funding, And Maybe Push For New/more Treatments. You Can Put A Mark On The E-mail That Says You Don't Want To Be On The Show. I'm Not Sure If It Is Dr. Phil Or The New Show They Are Doing Ask The Doctors. It Does Not Really Matter To Me, As Long As We Can Get The Word Out.
http://drphil.com/



I Have Emailed Him 4 Times Over The Last 6 Months So I Am Glad Someone Got Ahold Of Him Thank You!!

GJmom 07-31-2008 05:37 PM

Quote:

Originally Posted by Stacie (Post 336342)
I Have Emailed Him 4 Times Over The Last 6 Months So I Am Glad Someone Got Ahold Of Him Thank You!!

I was so surprised!! It took me a few minutes to understand what the lady was saying to me. It is not for sure that anything will come of it, but I have made it past the first step. They had me e-mail pictures of myself, so that is a good thing.

Stacie 07-31-2008 05:45 PM

Quote:

Originally Posted by gjmom (Post 336352)
i Was So Surprised!! It Took Me A Few Minutes To Understand What The Lady Was Saying To Me. It Is Not For Sure That Anything Will Come Of It, But I Have Made It Past The First Step. They Had Me E-mail Pictures Of Myself, So That Is A Good Thing.


So Glad 2 Hear It!! If It Does Go All Teh Way And U R On The Show Let Us Kno When So We All Can Tune In!! My Hopes R High For U!!

GJmom 07-31-2008 05:49 PM

Quote:

Originally Posted by Stacie (Post 336354)
So Glad 2 Hear It!! If It Does Go All Teh Way And U R On The Show Let Us Kno When So We All Can Tune In!! My Hopes R High For U!!

I will!!!! I figure if nothing else the lady I spoke to, and the producers she spoke to, all know that RSD is out there now. I have done what I hoped to do, in getting the word out there. So maybe the next person the writes in they will have on the show. I am stillhoping that all goes through, but if not then its okay because I got so much farther then I thought I would!

Stacie 07-31-2008 05:57 PM

Quote:

Originally Posted by gjmom (Post 336356)
i Will!!!! I Figure If Nothing Else The Lady I Spoke To, And The Producers She Spoke To, All Know That Rsd Is Out There Now. I Have Done What I Hoped To Do, In Getting The Word Out There. So Maybe The Next Person The Writes In They Will Have On The Show. I Am Stillhoping That All Goes Through, But If Not Then Its Okay Because I Got So Much Farther Then I Thought I Would!

That Was Exactly My Goal As Well So I Am Glad That U Got Done What I Was Hoping 2 Accomplish!! The Most Fabulous Thing Would B If They Had A Whole Show On Rsd And There Were Multiple Ppl On The Show With It!! But U R Rite That At Least 2 More Ppl Kno About This Horrible Disease

GJmom 07-31-2008 06:09 PM

Quote:

Originally Posted by Stacie (Post 336360)
That Was Exactly My Goal As Well So I Am Glad That U Got Done What I Was Hoping 2 Accomplish!! The Most Fabulous Thing Would B If They Had A Whole Show On Rsd And There Were Multiple Ppl On The Show With It!! But U R Rite That At Least 2 More Ppl Kno About This Horrible Disease

I agree! I am hoping that if more people write in that maybe a whole show can be done on it. How great would that be?! But if we have to do it 1 person at a time, then that is what I will do. I need to put all of my anger, and emotion, caused by the RSD into something. So I have chosen to channel it all into getting the word out there. If I can just help one person get diagnosed early enough that they can get it into remission, then I will feel my efforts are well worth it! I think I am stuck with this for the rest of my life, unless ECT or something like that will work, but others don't have to be. If not Dr. Phil then Oprah, or maybe a book. LoL I will get it out there!

Stacie 07-31-2008 06:21 PM

Quote:

Originally Posted by gjmom (Post 336369)
i Agree! I Am Hoping That If More People Write In That Maybe A Whole Show Can Be Done On It. How Great Would That Be?! But If We Have To Do It 1 Person At A Time, Then That Is What I Will Do. I Need To Put All Of My Anger, And Emotion, Caused By The Rsd Into Something. So I Have Chosen To Channel It All Into Getting The Word Out There. If I Can Just Help One Person Get Diagnosed Early Enough That They Can Get It Into Remission, Then I Will Feel My Efforts Are Well Worth It! I Think I Am Stuck With This For The Rest Of My Life, Unless Ect Or Something Like That Will Work, But Others Don't Have To Be. If Not Dr. Phil Then Oprah, Or Maybe A Book. Lol i Will Get It Out There!

I Have Written 2 All Tv Shows Ive Watched Or Heard Of And U R Damn Rite When U Say One Person At A Time If Okay With Me As Well. Anyone We Can Save From This The Better!!!

Desi 07-31-2008 07:06 PM

Hi GJMom! Okay, I just now wrote him a good and very "real letter" Like you wanted some of "Us" to. I sure hope I do get asked to go on the show. I would just tell him and the audience excatly why we all need to be heard in our own little silent worlds.. cooped up in bed, depression over being sick and tired, the pain, the "Ignorance" of untrained docs, nurses, therapists, heck I even said, you too, Dr. Phil, need to be educated also. So, hopefully something can be done!! Wow!! I bet you were numb in shock when that lady from his show called you!! Thank you for getting the ball rolling!! love and a HUGE THANK YOU!! ~Love, Desi :)

lostmary 07-31-2008 07:46 PM

Hi,
I also sent him an email about it. I'm hoping that a lot more contact him.

Mary


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