GMB appearance - surreal, scary but necessary! From Sue (Snoops)

[Snoops112233]

I just wanted to say to every one of you that has sent a message over the past few days a huge ‘THANK YOU’ for your encouragement and kind words. As I am sure you can imagine, it wasn’t easy to ‘go public’ with my story, but reading this forum over the years, and feeling the anguish that so many people were/are going through in relation to RLS and Dopamine Agonist medication, when I was approached I felt compelled to speak out. We are taking tentative steps towards RLS being seen as a recognised condition by the medical fraternity, and training being given, but we still have a long way to go, as we only know too well, but these are positive steps, and I hope by speaking out, I have helped some of you out there. And thanks to Julian for covering all the ‘sciencey bits’, we did alright I think between us. Let’s keep this community supporting each other, it’s so important, if anyone wants to message me privately for support, I will always do my best to help you because I got a huge amount of courage when I came off the medication from everyone here. Thanks again, it has meant the world to myself and my family xx

[Kaarina Administrator]

🔥🔥💪👍💛 You were a great team this morning. You are amazing. We at RLS-UK are full of gratitude. 🤗🤗

[Pippins2]

Thankyou so much for having the courage to do that for all of us I watched it you were both fantastic well done !

[LotteM]

Found it on youtube!

youtu.be/g2X3xbPS9LM?si=ZAo...(Not working as expected?)

The item seems to start a bit after 17 min. Going to watch now. Thanks, Sue, for daring.

[SueJohnson in reply to LotteM]

Thanks so much for posting it so I could watch it.

[SleeplessinNC in reply to LotteM]

Just watched. Great work!! Thank you for posting the link. I’m in the U.S. and missed the TV spot. 👍😊

I noted the female news anchor grimaced at the end when the doctor mentioned low-dose opioids. It’s a shame there is such a stigma for those of us who augmented, had ICD or are suffering from RLS. Low dose opioids have helped me quite a bit following my Requip/ Pramipexole crash.

Great work getting the word out there. We all know you probably saved another sufferer by informing them.

[LotteM in reply to SleeplessinNC]

Well spotted about that grimace. I found that she interrupted Sue several times before she had finished. Not the best anchor, to put it mildly.

[Snoops112233 in reply to LotteM]

Richard was far more invested from the beginning

[LotteM in reply to Snoops112233]

I noticed that too. It showed all through the interview

Also, ending with Glaxo Smith Kline’s (?) response kind of felt a bit like subverting the interview. Although it also came across as a bit of an obligatory rush-job. (Struggling to find the right English words, hope you understand what I mean.)

But YOU did SO well!

[SueJohnson]

I just watched it. You did great!👍👍👍

[AmyMac5]

Well done Sue, I admire you so much for putting yourself out there on our behalf. Thank you, you’re an absolute star.

[Tildabri]

That was excellent! Thanks Sue, and thanks to Lotte for posting - great for those of us overseas.

[Twitchyfeet]

Morning! I’m sorry I didn’t get the chance to acknowledge your brave discussion on GMB yesterday. It was a very informative and a true explanation. ROPINIROLE is and was a nightmare drug. I too have experienced the side effects of ROPINIROLE and the ‘cold turkey’ I had to go through to come off. Your discussion will help lots of people, including myself, to feel part of a community rather than ‘struggling with RLS ‘alone’. Well done for your bravery and confidence. Going on to TV must have been difficult but satisfying. We need to ‘shout out’ more about this debilitating disease. It’s truly horrible. Thank you.

[Snoops112233 in reply to Twitchyfeet]

Thank you for your kind words, I hope you continue to be doing well. Sue

[Laineypl]

Well done you !!

[Bramble2000]

You’re a natural on TV! Very good and informative interview. I still wish people knew just how severe and debilitating restless legs can be. It sounds so innocuous but it can be devastating. X

[Snoops112233 in reply to Bramble2000]

Aw Thank you x

[DicCarlson]

Excellent! Well done!

[Delilah162]

You did so well. Thank you for taking the time to share your story. ☺️

[Chocolate1-]

Well done Sue for having the courage to speak out.

[Zenawarrior73]

well done Sue i felt so proud of you watching this

[MrCrow]

Great work, Sue!