Tuesday, July 29, 2014

Seacoast Maine Support Group Wordle



Steps to creating a Wordle
  1. Create a list of words that describe your WED/RLS symptoms. If you use phrases, you'll have to put a hyphen between words to keep them together. (Example: Need to move needs to be Need-to-move)
  2. Go to www.wordle.net. (Tips: It does not work in Google Chrome and does the best in Internet Explorer. You'll also need to install Java when prompted unless you already have the free software installed on your computer.)
  3. Click Create your own.
  4. Copy and paste your list of words into the box or type the words in you want. If you repeat words, those will show up in a larger font size.
  5. Click go.
  6. A wordle will pop up. You can customize it by changing the font type, colors (custom colors or use some color schemes provided), layout size, etc.
  7. You can print it at the end or print to a PDF to send it to info@willis-ekbom.org and we'll post it on Facebook or the blog.

Guest Blogger: Lior Goldstein ~ You're invited!

It was back in my second year of college that I started noticing that my sleep was not as peaceful as before.  My sleep pattern was completely off.  I would wake up several times during the night having trouble breathing and my roommates were saying I was making noises in my sleep. I would wake up in the morning feeling groggy and miserable as if I hadn't slept the night before. The first diagnosis was that of a deviated septum, and I was looking forward to getting home from college and having the surgery done so I could finally sleep again at nights. 

However, after a successful corrective surgery, my problem still wasn't solved. I started on a long, difficult and frustrating journey of trying to find the root of the sleep disruptions. Thus started the lengthy, time consuming, and costly  process of doctors' appointments, sleep studies, extensive blood works, neurologists, cardiologists, scans and MRIs.  I was put on medication, changed medications, increased dosages, and was in constant communication with my doctors. I was even working with a nutritionist, writing down everything I ate every single day and how I slept that night trying to see if there was a correlation between food and my bad nights. All the while my sleep was getting worse and worse. I got out of bed every morning miserable and I even had to stop studying for the financial analyst exam I started preparing for because I could barely manage to concentrate in my college classes and keep up with the work load that in the past was so simple.

Anybody who has ever not felt well for an extended period of time knows that not knowing what is wrong with you is a painful process. You are fighting against something, and you don't even know what it is. As you can imagine, it was a relief when, after two years, I was finally diagnosed with WED/RLS. It was only then that I could start doing some research, understand what it is that I am going through and start working toward feeling better. One of the things that amazed me the most when I was researching WED/RLS was that a staggering 3 million Americans suffer from this condition, yet at the same time while doing research on WED/RLS, it seemed so unknown.   

I have given a lot of thought to how I can be more proactive about educating the public and  raising awareness of this condition. I know that if more people would have known about the condition I would have found out my problem sooner. I would like to make a difference in the lives of people who have it or will have it in the future.  For such a common disorder effecting such a large proportion of the population, there hasn't yet been enough of an advancement in this area. This disorder is genetic and I'd like to make sure that by the time I have kids and they get older, there will be a lot more known about WED/RLS and hopefully a cure.  

Being involved with the WED Foundation is very important to me because I know that they are engaged every day in working toward finding a cure. Also, equally important, the Foundation is there to educate and offer support to those who are impacted.   

I am grateful for the Foundation's staff who have been so supportive and helpful in helping me coordinate and publicize this upcoming fundraising and awareness night at the Marlins game on Tuesday, August 19th. This is the first event that I have planned. It is my intention to continue coordinating future events and fund-raisers, both in Florida and in New York, that will bring awareness to the organization. I believe that it is up to each and every one of us to take a proactive role!

For more information regarding the upcoming event please see the attached flyer.
To purchase tickets please send an email to:   FLMarlinsWED@gmail.com .
I hope to see you at the game!

Unable to attend and want to help? Make a donation in honor of Lior Goldstein at https://willis-ekbom.org/donate-today/.

Lior Goldstein

Friday, July 25, 2014

Create your own Wordle on WED/RLS

Steps to creating a Wordle:

  1. Create a list of words that describe your WED/RLS symptoms. If you use phrases, you'll have to put a hyphen between words to keep them together. (Example: Need to move needs to be Need-to-move)
  2. Go to www.wordle.net. (Tips: It does not work in Google Chrome and does the best in Internet Explorer. You'll also need to install Java when prompted unless you already have the free software installed on your computer.)
  3. Click Create your own.
  4. Copy and paste your list of words into the box or type the words in you want. If you repeat words, those will show up in a larger font size.
  5. Click go.
  6. A wordle will pop up. You can customize it by changing the font type, colors (custom colors or use some color schemes provided), layout size, etc.
  7. You can print it at the end or print to a PDF to send it to info@willis-ekbom.org and we'll post it on Facebook or the blog.
Happy Wordle Creating!