RLS Interview

[SquirmingSusan]

Julie, I would like to read your paper if you could send me a copy. I haven't responded to you about my RLS because I also have a diagnosis of narcolepsy and that complicates my sleep issues. Thanks for your work.

[Juls31]

Hi Everyone.

This morning my paper was semi-finalized. I am going to be starting on another paper now, but if I happen across any information I want to add to my RLS paper, I can do that. It will not be graded and turned in until the end of the quarter.

With that in mind, I was planning on sending out my paper via email to those who requested it. As you read it - feel free to take note of any mistakes or if you find any information faulty. Let me know, and I will fix it.

I look forward to hearing your responses about the paper. (I hope they are good!)

Talk to you all soon.

Juls

[Betty/WV]

Hi Juls: I look forward to reading your paper. I'm so glad that RLS is getting some publicity. For so long we (RLSers) were thought to be imagining our problems. I was, at one time, in a demeaning tone ask by a doctor, when I brought up the subject of RLS - "where did you hear about that, on Oprah Winfrey". At last, RLS is being recognized for what it is. We just hope that a solution is found for RLS. Or at least help, so we can have a productive life.

Thanks again. And wishing you the best. BETTY/WV

[ViewsAskew]

Juls - not sure if this will help you, but I stumbled across something today that might interest you.

DSM is a guide used by clinicians and physicians in evaluating/diagnosing mental health issues. They are looking at upgrading it (it's the fifth or sixth change to the manual since it was first created in the 1950's).

I was pleased to see the following proposed change:

"Sleep Disorders

The task force wants greater inclusion of disorders not listed in the mental disorder section of the International Classification of Diseases, as a way to "educate non-expert sleep clinicians (such as psychiatrists and general medical physicians) about sleep disorders that have mental as well as medical/neurological aspects." There are some new inclusions, like Restless Legs Syndrome, that will lend credibility to RLS patients and treatments. Various apneas will also get their own diagnosis, versus being categorized under Breathing Related Sleep Disorders."

[Juls31]

I sent out the paper to those who I have interviewed. If you would like the paper and I do not have your email, either post it here or send me an email at jh211707@ohio.edu. (I would check profiles for an email address, but it may not be the current or proper address, so I figured this would be the easiest way.)

Ann- I am familiar with the DSM and is fantastic to hear! The horizon is looking brighter.

[Polar Bear]

Hi Juls, I do not appear to have received a copy of your paper. I tried to email you on jh211707@ohio.edu. but only got a message that email could not be sent to ""Missing or Malformed Recipient""".

My email address on my profile is: jumpylegs19@yahoo.co.uk
It would be great if you could forward a copy of your paper to this address.
Thanks.

[SquirmingSusan]

Juls, I'd like a copy as well. I've updated my email address on my profile, but if it's easier its: susanjburns@mac.com

Thanks!

[Juls31]

I have sent the paper to both of you.

[Neco]

Paper looks good.. will email back some corrections and suggestions pretty soon.

[Polar Bear]

Juls, paper received ok, and looks great. I've emailed back to you with a comment.
I am indeed well impressed.

[SquirmingSusan]

Thanks for sending it. It looks good. I especially like how you included people telling how it affects their lives.

Just a couple minor corrections -
-Depression does NOT cause RLS, but RLS can certainly cause depression
-Imipramine is an older antidepressant that isn't an ingredient in other antidepressants. Nowadays people are more commonly prescribed SSRIs, which "can" make RLS worse, but doesn't always.
-Not sure you want to say anything about the addictive potential of opioids withoug clarifying that, when used correctly, the risk is very low. There's a certain amount of hysteria out there about painkillers, even among doctors...
- It's "Restless Legs (plural) Syndrome"
-I'm not sure if stress and anxiety trigger RLS, but can make it worse in people who already have it. (Subtle difference - I don't think those things will trigger it in people who've never had it.)

I feel like I'm nitpicking here, but there is just so much misinformation floating around there. I posted this so others don't email you with the same thoughts.

Overall it's really good, and gives a good picture of how it affects quality of life. I like your point at the end about trying to be understanding and not making the suffering worse.

Thanks Juls

[sarahjj]

Juls....I emailed you that I couldn't open your attachment but not sure that you got it. Can you please try resending when you get a chance?? Thanks!

[Neco]

DocX isn't the best format really. No problem on windows 7 with plain old Wordpad, but older versions of windows wordpad, or Office / Word that can't read DocX/XML won't be able to use it.

There should be a legacy option for Wordpad (.rtf or .doc even) under save as options.

Or even a plain text file would do in this case, although you do lose your formatting.

[Juls31]

Hi, I will take all of your suggestions/corrections and try to mend the paper accordingly. Like I stated before, this paper isn't due until the end of the quarter and I will be working on another paper, so I may not alter the paper until then, but thank you for your comments.

I'm not sure if stress and anxiety trigger RLS, but can make it worse in people who already have it. (Subtle difference - I don't think those things will trigger it in people who've never had it.)

That was a paraphrased quote from an interviewee that had commented earlier in the paragraph.
Also, when I change the paragraph about medication, I will use information from this website: http://www.rlshelp.org/rlsrx.htm