The new questionnaire is entitled:
LIFE WITH RLS
is now ready! Please visit:
www.thomasholly.net/survey/rlssurvey.aspx
CAVEAT! There are various safe guards built into the web page to prevent abuse and make the data safer and more reliable.
At the start you will have several chances to read the long introduction/background on the survey or go directly to the survey.
Once you start the survey, you will not be able to proceed to the next page unless you answer all the questions required. If you are unable to proceed scroll through the section again and see whether there is a red lettered warning reminding you to answer the omitted queries. You can always go back and check or correct you answers.
However, once you press the submit button, the survey disappears and you will not be able to complete another one and submit it.
In the following post I will quote from the introduction and background of the survey web site.
I hope we will receive lots of submission. Herewith I gratefully thank Nadia, my son Tom, and my daughter Gloria to have made this questionnaire a reality
LIFE WITH RLS new questionnaire is on-line and accessible
LIFE WITH RLS new questionnaire is on-line and accessible
Last edited by jumpyowl on Tue Oct 12, 2004 12:20 pm, edited 2 times in total.
Jumpy Owl
Background to survey project
Here is a quote from the web site of the new questionnaire:
RESTLESS LEGS SYNDROME BACKGROUND
Skip to Questionnaire
This is a brief insight into the vast and often frustrating world of Restless Legs Syndrome. The aim is to provide useful information about what is still a very much unknown and misunderstood disorder. The events leading up to and surrounding the construction of the exhaustive questionnaire and its subsequent publishing on the internet will also be revealed.
Our goal is to have as many fellow RLS sufferers as possible participate by completing and submitting a questionnaire entitled:
“Life With RLS”
Click here then click the "next" button to start the survey
Why Do this Survey?
I would like to elaborate a little more on why I believe this project could make a significant contribution to the medical world. My forte in research has always been that I have the unique ability to identify hidden relationships among seemingly unrelated observations and facts. The others are time and motivation. Although I am retired and also suffering from this affliction, I found that I was able put my skills to good use by analyzing the posts on the Discussion Board, asking pertinent questions, and occasionally offering helpful suggestions.
After being ignored by their health care providers and more often than not, being suspected of ”imagining” their problems these patients truly appreciate someone who is knowledgeable and eager to learn, to listen and most importantly: respond to their problems.
Once all the data from the new survey has been collected and collated, a subsequent evaluating article will offer a truly unique insight into how this strange affliction affects RLS patients on a daily basis. It is also hopeful that this article will shed some light on the mishandling of the proper healthcare management these patients desperately need, yet are not receiving.
Below is a quote from the lecture presently being written which so far, has been based primarily on the data gathered from the original preliminary questionnaire.
Background: The idea and majority of the subsequent communication leading up to the formulation of this questionnaire occurred on the Discussion Board of the Restless Leg Syndrome Foundation. This Discussion Board has been in operation since February, 2004 and even without supervision from the hosting Foundation, the frequent, knowledgeable and compassionate posters spontaneously formed a loose group. At the instigation of one of the first discussion board members, Jumpy Owl, the group started an ORP (Our Research Project) in June which culminated in the construction of a preliminary questionnaire. This questionnaire was publicized on the Discussion Board of the RLS Foundation and also to various RLS support groups throughout the Internet. The questionnaire was then e-mailed to potential participants as and when requested.
In a relatively short amount of time, the number of completed questionnaires passed the one hundred mark, a remarkable feat in itself. The information which was being obtained supplied not only many interesting results, but further insight into the Syndrome itself. It also exposed the weaknesses of the questionnaire format; revealed new avenues of exploration; leading to subsequent topics and questions being added.
This project is led by Jumpy Owl, who is in real life, Dr. Frank J. Holly; a former Professor of Medicine, and the President of the Dry Eye Institute (www.dry-eye-institute.org). Dr Holly is a self-diagnosed sufferer of RLS and has been studying this affliction since he realized his condition is also associated with a severe case of PLMD (Periodic Limb Movement Disorder). The following volunteers have also played a significant role of the creation of “LIFE with RLS”:
• Nadia L. Russell, Financial Accountant and RLS and CFS sufferer - Queensland, Australia;
• Gloria A. Holly - East Texas;
• Thomas F. Holly, B.Sc., M.Sc. - East Texas,
• as well as over one hundred other RLS sufferers who completed the Preliminary Survey as well as making constructive suggestions.
Survey
Jumpy Owl
re survey
Jumpy I have noticed that you have worked really hard to get people to fill ou this survey and I PROMISE as soon as I get back from the doctor and know a little more about how they are going to treat me I will fill it out first thing after I get home! 
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Guest
Hello, Alecto
Thanks Alecto, I am seeing a neurologist tomorrow. Will account for my adventures also on my thread: Self-diagnosed!
Let us know what is happening to you.
Let us know what is happening to you.