Thursday, August 7, 2014

Will you help? Let's raise awareness for WED/RLS!

September 23 is WED/RLS Awareness Day. Let's raise awareness during the month of September. You can help raise awareness of Willis-Ekbom disease/restless legs syndrome (WED/RLS) by picking to do 3-4 items from the list below. Feel free to challenge yourself and others to check off more items on the list.
  1. Become a WED Foundation member (https://www.willis-ekbom.org/join-the-wed-foundation). 
  2. Get a friend to like us on Facebook (https://www.facebook.com/pages/Willis-Ekbom-Disease-Foundation). 
  3. Visit the blog (wedinfo@blogspot.com) and comment on a guest blogger post. 
  4. Write a blog post on WED/RLS on your own personal blog page. 
  5. Sign up for our monthly Efriends (https://www.willis-ekbom.org/member-login). 
  6. Take the new diagnostic tool survey on our website (http://www.willis-ekbom.org/wed-rls-diagnostic-tool). 
  7. Make a gift in honor or memory of someone special to the WED Foundation (https://www.willis-ekbom.org/donate-today). 
  8. Purchase a WED/RLS awareness pin (https://www.willis-ekbom.org/about-the-foundation/store). 
  9. Purchase a WED/RLS Wordle canvas print to display in your home or work place. 
  10. Contact your local newspaper’s health editor, and ask him/her to write a piece about Willis-Ekbom diease/restless legs syndrome (WED/RLS). 
  11. Share your WED/RLS story with your Facebook friends. 
  12. Change your Facebook Timeline Cover Photo to reflect WED/RLS. See Foundation’s Facebook page for a cover photo. 
  13. Write a letter to the editor to your local newspaper or TV station. 
  14. Tweet about the WED Foundation during Awareness Month (September). 
  15. Text your friends the WED Foundation’s website (www.willis-ekbom.org). 
  16. Join the discussion board (http://bb.rls.org/). 
  17. Send WED/RLS information, including old editions of NightWalkers, to your doctor’s office so other patients may benefit. 
  18. Be a guest blogger at www.wedinfo@blogspot.com by writing a personal story or creating an art image to share with the WED/RLS community. Submit your story to info@willis-ekbom.org and title the email Guest Blogger Request. 
  19. Request a free WED/RLS awareness bracelet and wear it the month of September. Email us at info@willis-ekbom.org and title the email Awareness Bracelet Request. 
  20. Offer old issues of your Nightwalkers to your local library for their magazine rack. 
  21. Create your own WED/RLS fundraiser on https://givemn.org/
  22. Email or mail us contact information of five (5) friends or family members to give them a free trial membership with the Foundation. Email us at info@willis-ekbom.org and title the email Trial Membership Requests. 
  23. Purchase and wear an apparel item from the WED Foundation to the local mall, park, hospital or community event. 
  24. Have your city put WED/RLS Awareness Day on the community calendar. 
  25. Design and create your own WED/RLS awareness t-shirt or tote bag to wear or carry around the month of September. 
  26. Ask your neighbors to leave their porch lights on overnight on September 23 to support the nightwalkers in your community. 
  27. Attend a WED/RLS support group meeting or reach out to a local volunteer. See upcoming meetings at http://willis-ekbom.org/connect-with-others/upcomingmeetings
  28. Ask your work place to hold a “wear jeans or slippers to work” on a Friday (or designated day) to collect donations from those that participate. 
  29. Hold a small fundraising event in your community to spread awareness of WED/RLS and raise money to support the Foundation’s mission. 
  30. Download, print and post WED/RLS posters in your community (schools, church, grocery stores, library, community centers and other billboard areas). 
  31. Call a friend or family member with WED/RLS to find out how they are doing. 
  32. Make and submit a WED/RLS awareness video. 
  33. Give the gift of WED Foundation Membership to family and friends. 
  34. Join in a free WED Foundation webinar. 
  35. Ask a friend or family member to join in on a foundation webinar. 
  36. Write a post on your Facebook account using the words WED/RLS Awareness day in your post on September 23rd. 
  37. Become a Support Group Leader or Contact. 
  38. Recommend to your WED/RLS healthcare provider that they become a member of our HCP Online Directory. 
  39. Host a, “Stomp out WED/RLS” jump rope party for school aged children to bring awareness of the disease in children and adolescents. 
  40. Ask local or national sports teams to announce or list on the jumbotron that today is WED/RLS Awareness Day 

Wednesday, August 6, 2014

Wordle Canvas Prints for sale

Help spread awareness by displaying a Wordle canvas. 
Go to the Foundation's online store to purchase one today. 


You may also call to order the canvas print at 507-287-6465.

Guest Blogger: Mary L. ~ My personal experience with WED/RLS

DisclaimerGuest blog posts are the opinions of the authors only and not of the WED Foundation, its employees or its Board of Directors. Publication on the WED Foundation’s blog does not imply endorsement by the WED Foundation. Therapies and results described in Bedtime Stories reflect the experiences of individuals and cannot be generalized to everyone with WED/RLS. It is important to talk to your healthcare provider and investigate concerns such as safety, efficacy and cost before making any changes to your treatment regimen. Stories may be altered for length or clarity.

Three years ago my WED/RLS that had been an occasional annoyance suddenly made my life very difficult. Plane rides were torture. I was only sleeping a couple of hours a night. Sitting on a couch to read or watch a movie at night became a distant memory.

I went to a neurologist who did all kinds of testing. My neurologist said the WED/RLS looked primary and prescribed a dopamine agonist drug. I began reading so much online about sufferers who had augmented on the dopamine agonist drugs. Other sufferers wrote about very troublesome side-effects. I had a bad reaction a few years earlier when I took statins, and was very reluctant to take another powerful drug.

So I researched online and found a drug called kratom. It’s the leaf of a tropical plant in southeast Asia. Wikipedia describes it like this: “Kratom behaves as a μ-opioid receptor agonist like morphine and is used in the management of chronic pain, as well as recreationally.”

So I researched.

I found that not only was it not FDA approved, the FDA had labeled it a drug of concern. But it was legal, and everything I found online indicated it was safe. Apparently, it does not depress breathing, like a regular opioid does. It is also hard to overdose on it, as you have to take so much that you become nauseous first and throw-up. There were a couple of cases of teenagers who had mixed it with other drugs, and one died. But, no matter how hard I looked, I couldn’t find any cases of anyone who had died just from kratom. This, of course, distinguishes it from prescription opiods.

So I decided to try it. I didn’t look at it as a good option, but it seemed a less-bad option than the dopamine agonist drugs, which I really did not want to take. At this point, WED/RLS had severely impacted my quality of life. I found kratom widely available on the internet, even on Amazon.com, and began ordering the powdered leaf.

It’s been over a year now. I take kratom daily and it has given me my life back. The strand I use—and that which at least one other WED/RLS sufferer I know uses—is the red leaf Borneo strain. I make up a dose by letting a gram of kratom sit in a cup of orange juice for twenty minutes, so it dissolves. Then I drink it. Usually, over 24 hours, I’ll take four or five doses. I also have a capsule-filling device I got on Amazon, and will make up capsules to keep in my purse or take with my when I travel.

In addition to the kratom, I take a good variety of vitamins and minerals. The only other thing I take that might be helping as well is L-theanine.

Last month I flew comfortably from Newark to Honolulu—a thirteen hour flight. I had one little period of mild discomfort when I woke up from a nap, but fixed that by simply walking to the restroom. I took a bit more kratom than usual for this trip—maybe as much as ten grams, from the time I left the house until we landed. I usually get six, and sometimes seven, hours of sleep every night. I usually wake up twice—since kratom hasn’t produced time-released leaves yet—and take another dose, and then perhaps walk around for five or ten minutes and then go back to sleep.

For a while, I took the maeng da strain. It made me constipated. After I switched to the red leaf Borneo, and started taking some extra magnesium, the constipation cleared up. The only side effect I notice now is that I get a headache if I don’t drink enough water. I’ve discovered you need to drink a good deal of water while taking kratom.

Kratom doesn’t make me sleepy or nauseous. It manages both the hyper-alert feeling as well as the creepy/crawly feeling of WED/RLS. I don’t feel high at all; in fact, I just feel normal, probably because I don’t take enough to feel high. With the low dose I take, I can drive and do everything that I normally do.

So far, I haven’t seemed to develop any tolerance for the drug and am taking about the same dose I started with over a year ago. But, as we all know, the disease is a moving target, and I expect as it worsens I’ll have to start taking a bit more. So far, all is really good.

I hope my story can help others.

About the guest blogger: Mary L. is an active member on the Foundation's discussion board (www.bb.rls.org).