Anyone interested in being interviewed for a web-series on WED/RLS?

[Heyyy_REDDOG]

Hi everyone!

So I'm Simon. I am new to this forum, but unfortunately I am far from new to WED/RLS.

For as long as I can remember, I was a fidgeter. It’s how my mother always described me - and quite accurately too. Long journeys in packed cars, sitting in tiny seats surrounded by others at the cinema, sitting on the sofa, and going to bed. It was always... uncomfortable, painful. For 30 years I endured countless visits to GPs and various specialists and their insistence that I had growing pains, depression, an iron deficiency, sleep deprivation, a central nervous tick, sent for MRI’s, told I had an abnormal fundus… I still don’t know what that one is… and then back to depression again.

I don't blame them. Apart from the fact that I no doubt looked pretty depressed, the majority of the medical professionals I encountered knew woefully little about WED/RLS.

It took moving a hundred miles away to South West UK and a brand new doctor to finally be diagnosed. I've been taking a steadily increasing dose of Pramipexole for the last 5 years or so, and am able to mostly manage my disease. Of course, it is far from a cure. I have good days, and have some not so good days.

But during my 30 year journey I read about other sufferers - all with their own stories, shaped by their individual experiences. The severity of their condition, pain relief, support and diagnosis.

Around 5 years ago I founded Red Dog Productions, a local video production company working with bands, businesses and communities throughout Bristol and South West UK. In this time I have been lucky enough to interview so many incredible people, working on amazing initiatives - such as The Bristol Energy Cooperative, Bristol Women In Music, Musicians Against Borders.

Now I am putting together a series of videos on sufferers of WED/RLS, and am inviting any of you to be interviewed and talk about your experiences with the disease. Earliest memories, diagnosis (incl. challenges in actually getting diagnosed), treatments - successful and otherwise, living with the disease - work/home life, and anything else you wanted to share.

Depending on the volume of interviews we are able to conduct, our primary goal would be to produce one overall video on WED/RLS, featuring clips from a number of interviews, with links (on screen and in video description) to full(er) individual interviews.

In addition to interviewees, I would love to hear from any WED/RLS organisations who would be interested in help with things like marketing and promotion.

My story is much longer than what I have shared here today, I didn't want to bore you all straight off the bat. But I'm more interested in your stories. And above all, I'm interested in telling your stories.

**IMPORTANT NOTES**

Please note that neither I, Red Dog Productions, or this production are in any way affiliated with or sponsored by the RLS Foundation. This is an independent project, and is my passion piece.

In addition, unfortunately for practical and logistical reasons at present I am only able to consider interviewees within the United Kingdom.

If any of you have any questions, feel free to ask them below.

If you would like to discuss being interviewed, or taking part in any way, you can drop me a PM here on the boards and I will provide more details.

Many Thanks,
Simon
Simon Regan
reddogproductions.co.uk

[ViewsAskew]

Welcome, Simon. I wish I were in the UK to help.

I hope you stick around as a participant in the board. My guess is that your increasing dose of pramipexole may be related to a condition called augmentation and someday you'll come to a crossroads related to that. We'll be here if you need any help navigating that journey.

[CarlaB]

Hello Simon, Good for you for doing this project. I'm in California, otherwise I would help.

Take care on pramipexole- that particular med caused augmentation and my RLS and sleep to become most severe.

Thank you for getting the word out on RLS!

[Heyyy_REDDOG]

Welcome, Simon. I wish I were in the UK to help.

I hope you stick around as a participant in the board. My guess is that your increasing dose of pramipexole may be related to a condition called augmentation and someday you'll come to a crossroads related to that. We'll be here if you need any help navigating that journey.

Hi and thank you for the welcome!

I absolutely intend to stick around and contribute to the conversation, although unfortunately the nature of my work means I don't have a lot of free time.

I've been reading a fair bit on augmentation recently, and am hoping to secure a doctor's appointment this week to discuss that very topic. I am reluctant to switch, as for all its faults Pramipexole has been pretty successful in managing my symptoms until fairly recently. Hopefully we can agree on a viable alternative, although getting an initial diagnosis and prescription in the first place was such a challenge in itself.

Thanks again for the kind words, I look forward to chatting more in the future.

Hello Simon, Good for you for doing this project. I'm in California, otherwise I would help.

Take care on pramipexole- that particular med caused augmentation and my RLS and sleep to become most severe.

Thank you for getting the word out on RLS!

Thanks CarlaB, I completely understand. It is a real shame that I am struggling to locate sufferers based in the UK, as a lot of forums and discussion boards are globally reaching. This is of course a fantastic for fellow sufferers, but is nonetheless still hampering my progress.

As I alluded to above, I am hearing more and more stories of Pramipexole's lack of long term viability. May I ask which alternative medication you switched to following your augmentation experience with Pramipexole?

[CarlaB]

Simon, I was switched to Requp generic, but recently started having augmentation on it after only a month. I am lowering the dose and also splitting it per my doctor's instruction. He also added in Tramadol. Taking it day by day at this point. Good luck!

[67java89]

Simon, I too would love to help but I live in the States. If you're able to come over to the states I'm sure you could get some great interviews. Good luck!