British RLS documentary - Online access

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Rustsmith
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British RLS documentary - Online access

Postby Rustsmith » Sun Apr 02, 2017 10:13 pm

It is my understanding that a new documentary on RLS that was made in the UK will be shown there on Channel 5 at 10P on April 4. The researcher for this documentary contacted us a while back, but the Foundation asked them to leave the board when they got a little bit too pushy with some of our members.

Regardless of that, the documentary will be broadcast on Tuesday. And it is my understanding that those of us who do not have normal access to Channel 5 can watch it over the Internet at https://watchbritishtv.com/live-tv/five/. When I checked the website out, it appears that you need to register if you want to view it full screen, so you might want to check the website out ahead of time. Also remember that it is broadcast at 10P in the UK, which means that it will be on during the afternoon here in the US (depending on which timezone you are in).
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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Polar Bear
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Re: British RLS documentary - Online access

Postby Polar Bear » Mon Apr 03, 2017 3:14 pm

As I live in the UK I plan to watch it live, and also record it.

This is a link from the RLS-UK site hoping to assist viewers from abroad.
http://www.viewabroad.com/CHANNEL5

Perhaps it may also be of help.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Polar Bear
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Re: British RLS documentary - Online access

Postby Polar Bear » Tue Apr 04, 2017 11:12 pm

I watched this program which covered how RLS affected the quality of life of 4 sufferers, it didn't mention causation, treatment, medication. Already there are many threads criticizing the lack of discussion of said causes and treatment.

However, I think the critics are missing the point in that it was only ever about the suffering and effect on daily life. The four participants were very open.

One older man wedged his feet between the door and the frame and pulled hard to get sufficient pain as counter stimulation.

One woman was divorced as her husband could not stand the upheaval. It showed her trying to have a pedicure and how difficult it was for her to sit still.

Another woman had a husband who wasn't as understanding as he could have been, he got irritated by her fidgeting and showed his irritation.

A younger man had broken toes and his wrist when flailing at night. He couldn't work because of memory problems and concentration. His wife works while he is the house husband. Sticky notes had to be left as reminders for his chores.

I found it of benefit in that my husband watched it with me and heard from other sufferers about the misery, also from a few medical personnel. I believe my husband learned a lot about the suffering which I usually refer to as sore legs, or twitchy legs.

I hope some of you get to see this program.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: British RLS documentary - Online access

Postby ViewsAskew » Wed Apr 05, 2017 3:26 am

Thanks for the recap, Polar Bear.
Ann - Take what you need, leave the rest

Managing Your RLS

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Rustsmith
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Re: British RLS documentary - Online access

Postby Rustsmith » Wed Apr 05, 2017 11:45 am

I watched and came away with the question - why were these four allowed to suffer as they did because the were obviously not receiving any form of treatment. It definitely showed what it is like to have severe, untreated RLS. But even marginally effective treatment would have been better than what the four of them were shown to be experiencing. The younger man with the broken bones was losing his short term memory, reportedly because of chronic poor sleep due to severe PLMS. Why isn't he taking a DA so that he won't thrash around at night?
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: British RLS documentary - Online access

Postby Polar Bear » Wed Apr 05, 2017 12:34 pm

Exactly Steve, none of them mentioned medication of any sort. I find it hard to believe that persons suffering to this extent have not been prescribed medication whether it is effective or otherwise.

I wondered if the participants had to agree to be drug free for the purposes of the program to be able to show the untreated RLS symptoms.

On a thread of comments from viewers there was input from the daughter of the older man who used direct pain to counter the symptoms. There were posts stating that the producers were not allowed to include the subject of medication. Many calls for follow-up programs to provide more information on treatment.

As information for a non sufferer I think it made clear the distress and suffering involved. This morning I read that RLS-UK received 4,000 contacts in the hour following the program.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: British RLS documentary - Online access

Postby ViewsAskew » Thu Apr 06, 2017 6:36 am

WOW - 4000 contacts in an hour!!!
Ann - Take what you need, leave the rest



Managing Your RLS



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Polar Bear
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Re: British RLS documentary - Online access

Postby Polar Bear » Thu Apr 06, 2017 3:36 pm

This morning I felt rather like the lady in the programme who was in torture while trying to prove to herself that she could face her symptoms and work through them to have a pedicure.
I was at the hairdresser having the full works, full head base colour, foils/slices.... cut/style/blow dry. A lot of ladies will know about this.
After managing to last out the 30 minutes under the heat to process the colours I could stick it no longer. instead of following over to the cutting chair, I went walkabout in the salon, suggested my hairdresser go ahead with the next client and come back to me later. So I walked and stretched, did a bounce or two, while the tin foil wraps hung from my head. Read a chapter or two on my Kindle as I took care not to bump into anything.

Noone blinked an eye.
Don't mind me folks, I've got fidgety legs, aka RLS. :thumbup:

I eventually took my turn in the chair for the finish and was so so so glad that I hadn't just sat and squirmed in misery.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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legsbestill
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Re: British RLS documentary - Online access

Postby legsbestill » Thu Apr 06, 2017 5:37 pm

Good for you. But please tell me you haven't abandoned the pink hair?

Polar Bear
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Re: British RLS documentary - Online access

Postby Polar Bear » Fri Apr 07, 2017 5:29 pm

da da..... da da....... that's the funeral march.
Yes, the pink hair has gone. It did get attention while it lasted and I don't regret trying it.
I still have the 95% full bottle in the bathroom.
My granddaughter has mooted perhaps colouring the bottom inch of her very long dark hair during the school summer holidays (9 weeks) and then getting it cut off before returning to school. Her mum might just let her as it's temporary .... as opposed to agreeing to let her get her ears pierced.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: British RLS documentary - Online access

Postby badnights » Tue Apr 11, 2017 6:34 am

Purple next, Betty? Or aurora colors - some green, some blue, some red?

Is there a place online to watch that program? I think it's great that they focused on the misery. It bothered me to see people in the Foundation videos sitting calmly and talking about how terrible the symptoms were. I believed them, of course, having been there, but I couldn't help wondering how people who didn't have the disease would interpret it.

Years ago I bought two video cameras with the intention of setting them up around the house, with motion-detected recording, and later extracting some clips that show what it's really like. Never got farther than that.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
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Polar Bear
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Re: British RLS documentary - Online access

Postby Polar Bear » Tue Apr 11, 2017 4:13 pm

I might on occasion have the occasional coloured streak - sometime :)

Regarding the Channel 5 Documentary on RLS I've done a bit of searching but can only find 'comments' about the programme. On our local programming we can generally find a programme on 'Catch Up' but this is of no help to you. I think Steve maybe watched it live with his link referred to above.
If I see it repeated I'll let everyone know.
Perhaps Steve can help ??
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: British RLS documentary - Online access

Postby badnights » Fri Apr 14, 2017 8:11 am

thanks Betty
Beth - Wishing you all restful sleep tonight
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viewtopic.php?f=5&t=6532&p=61601#p61601
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Yankiwi
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Re: British RLS documentary - Online access

Postby Yankiwi » Fri Apr 14, 2017 9:29 am

When I was about 20 I applied a henna rinse in the shower and thought I was going to end up like Lucille Ball. Instead, I couldn't even tell the difference. That was my only foray into colouring my hair. As my hair started to turn gray either I had money or time but not both at once.


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