Friday, May 30, 2014
Last fall more than 1,600 WED Foundation members participated in the Patient Odyssey Survey which took an in depth look at the effects that WED/RLS has on lifestyle and emotional health of patients and their partners. At the annual SLEEP meeting in Minneapolis in June 2014, Dr. Becker and Dr. Ondo, WED/RLS experts who are on the Foundation's Medical Advisory Board, will present the survey results. SLEEP meeting participants will have the opportunity to review and discuss the survey results with the WED Foundation leading experts.
The data from the survey confirmed that the quality of life for both the individual with WED/RLS and their spouse/partner is seriously impacted. Individuals with WED/RLS and their partners experienced disturbances in their sleep, mood, productivity, and the ability to participate in social/leisure activities. Though it will not be a surprise for individuals who suffer from WED/RLS, the survey presents a comprehensive picture that goes beyond anecdotal reports.
The WED Foundation survey respondents confirmed the need for greater awareness and understanding of the disease condition among physicians, the public and in the media. According to the survey, for people suffering from WED/RLS, educating physicians about the available treatment options and creating long term disease management plans were a priority. These are the very priorities that the WED Foundation embraces and supports.
The Foundation thanks our members for participating in the survey and providing valuable information for the SLEEP meeting poster presentations. The active involvement of our members will continue to ensure that important data is collected and analyzed by experts and shared with people affected by WED/RLS. Education and increased awareness among sleep physicians and researchers will positively impact the lives of men, women, and children living with WED/RLS.
SLEEP meeting info can be found at: http://www.sleepmeeting.org
Tuesday, May 27, 2014
Recently the WED Foundation created a wordle that has generated a lot of interest. What is a wordle? Glad you asked, since I didn’t know what it was either. A wordle is a “word cloud” created from various words on a topic. The WED Foundation asked people to describe in one word what living with WED/RLS was like, then used those words to make a very unique wordle. If you haven’t seen it, please go to the WED Facebook page and scroll down a ways.
This wordle is amazing. It is informational. It is truthful. Most of all, it is scary and depressing. Terms such as “herky-jerky legs”, “buggly”, and “ikky” can make this disease sound trivial and bearable but also describe what it feels like. “Misunderstood” is a fact of life most of us have lived with for a long time. We have not been taken seriously and in many, many cases that is still true. Finding words that will accurately describe what we feel is almost impossible—it is so different in many ways for each one of us.
Even when we get brave enough to admit that WED/RLS is “insanity”, “unending”, and “tortuous”, friends, family and the medical profession don’t take us seriously. In their minds, having restless legs, arms or other body parts is minor; a small annoyance at best. I remember when fibromyalgia and chronic fatigue syndrome were considered maladies made up by people who were just simply lazy. Now they are accepted and widely known as real conditions; the public at large knows exactly what they are.
I was thinking about what words might be used to create wordles for other chronic conditions or diseases. Probably most of the words from our wordle such as “relentless”, “excruciating”, “unrelenting”, and “incurable” can be used to describe other diseases. Take out those words, plus the ones such as “heebie-jeebies” and you are left with two that are major players in our world.
The first is “chainsaw”. While that may get chuckles, it is a deadly serious word. Too many people have said they would like to cut off their legs just to get away from the misery but are afraid of phantom restlessness. Again, this sounds funny but it isn’t—name one other disease where you would think about cutting off part of your body rather than endure the feelings. We are not talking about pain here (although many suffer with that along with the restlessness); pain is accepted in our society—having jumpy legs/arms is not.
The other word that makes this wordle unique is “lonely”. I fully understand that every person at one time or another feels lonely. But there is a loneliness that comes when you are surrounded by people who have no clue what you are going through. Chemo patients, dialysis patients, people with dementia, all have enormous support networks, which is wonderful. WED/RLS affects 7-10% of the population and yet we walk the floors at night with no one beside us, we look out at the darkness without having anyone holding our hands.
This wordle can be depressing—just like our lives can be dealing with WED/RLS. But I prefer to look at it as something new and refreshing that can be used to create awareness, open conversations and best of all, remind us that we are NOT alone. I may not have the exact same symptoms as you, or take the same medications as you, or have the same outlook as you—but I KNOW WHAT YOU ARE GOING THROUGH. The same moon shines over us all. So while we may not know each other personally, we can work together so that one night, if we find ourselves walking the floors, WED/RLS will not be the reason.
Tuesday, May 13, 2014
Hosting a Fundraiser for WED/RLS Tips by Donna Payne
My Background; My son has Willis Ekbom disease in it's most severe form, 24/7 throughout his body. He was not diagnosed until he was in his mid-thirties. During those years, until then, he was tormented at school, was abused by the medical profession, and misunderstood by family, friends, teachers, employers and more. As his Mom, I wanted to make it up to him as best I could. Top of my list was AWARENESS, I needed to spread the word so more sufferers would be diagnosed earlier, keeping in mind that some of those sufferers might be my grandchildren and maybe yours.
Maybe some of you will feel the same passion to make a difference that I did so I've put together some steps that helped me to have successful Garden Parties.
First you must be passionate, determined and confident that you can make a difference.
WHY: To support the mission set out by the Willis-Ekbom Foundation; To increase awareness, improve treatments and to encourage research to find a cure.
WHAT: A Garden Party
WHERE: In your yard.
WHO: All your women friends, their friends and neighbors. Anyone you meet that you think might enjoy the event. Keep in mind the numbers you can accommodate. Invite more so you get the numbers you want. We invite 100 and get about 60.
WHEN: Choose a Sunday in the summer. I have it from 2pm – 4 pm.
Donna's Garden Party
Why: WED/RLS is affecting a great number of our population. It is only now being recognized as a serious disease. There are still many, many people who may have it and not know it, many physicians have no knowledge of it, people make fun of it. Your children and grandchildren may inherit it. People entering their senior years will suffer more when they become less mobile. Without funds for research we cannot expect to relieve any of the suffering caused by this debilitating disease.
What: Entertainment; Having a Garden Party is one way of raising funds while offering a fun experience to all who attend. Here are some of the ways we have made ours successful. Find a person who is willing to set up music and a mike for you. We had a local musician bring her portable piano and she sang and played for us. The first year she sang English tunes, the next year was of a Hawaiian theme, we gave each person a lei purchased at the dollar store and our musician sang Hawaiian songs and then taught us the Hula. The following year we had an English High Tea theme and a spontaneous rendition of Octopus's Garden acted out with props and volunteers. Any musician of your acquaintance works. Failing that you can simply have background music of your choice. Ask people to volunteer. You will be surprised how many are willing.
Food; We've served dainty sandwiches and squares. For the high tea we used china tea cups and lunch plates. Sometimes we use colorful plastic plates. This year our theme is butterflies and we will use the plastic plates and glasses for lemonade and mugs for tea and coffee. Our savoury will be veggies in a mini flower pot, cold kebobs and butterfly shaped crackers.
Where: We have a large yard and can accommodate about 60 guests. If I had less room I would invite the number I could accommodate. The event could be held indoors or out. We have always had nice weather but planned to have it indoors if it rained. That would be very tight but not impossible. Consider your community hall, your church basement, a street party, etc.
Who: We have only invited women. In our rural community women enjoy a chance to get together and they love the garden party atmosphere.
We encourage them to bring a friend or two and suggest a date when we cannot accept any more.
On the Serious Side; I read all I can about WED/RLS and each year I have spoken passionately about it. You probably have a personal story to tell, how it affects the person with the disease as well as their family and friends. This is the part that I feel inspires people to donate so do your best, touch their hearts. Talk about how children suffer. Talk about the people with the disease that cannot do the things they love, concerts, travel, movies, etc. Remind people none of these folks ever thought there lives would turn out this way. Tell them the charity is underfunded. Tell them to be aware of WED/RLS and to spread the word.
Just do it, you will be so glad you did! Donna