Monday, July 29, 2013

Guest Blogger: Disabilty for WED/RLS by Shawn McDowell

I was diagnosed with WED/RLS when I was 20 years old. My doctor prescribed Mirapex. For several years, the prescription helped quite a bit.  Around a decade later, the Mirapex seemed to completely stop working. My RLS/WED was increasingly getting worse, year after year. After trying a myriad of medication combinations (which did not help), my doctor added a mild narcotic medicine. I found some relief from the symptoms.

At the age of 32, I relocated from Reno, NV to Central Florida. After two sleep studies, I was diagnosed with severe WED/RLS and severe PLMD (Periodic Limb Movement Disorder.

I was typically falling asleep around sunrise, and getting up about four (4) hours later.  Life was becoming unmanageable, and I had a business to operate. Depression and anxiety set in from the lack of sleep. My doctor added new medications to help me with my depression and anxiety.

In my mid-30s, my Neurologist (a specialist in the fields with WED/RLS and PLMD) told me, specifically, that I needed to be on permanent disability. I told him that it was near impossible to get approved for disability for my diagnosis.

My doctor's response was as follows:  To get a positive outcome in achieving disability approval, I needed to obtain two (2) letters from physicians who specifically stated I require full disability in writing along with my writing a several page letter that was kind, but to the point, as to how WED/RLS (and PLMD) had affected my life and ability to work.

Without an attorney, I sent in my documents from the doctors and my letter. I was not rejected! My case was approved on the first attempt. I started on disability in 2008 due to my WED/RLS and PLMD.

I am currently on six (6) medications and I have no sleep routine. I sleep when my body gives out, and despite the medications, I occasionally still have the kicks, jerks, bugs-in-legs, and all the things that go along with WED/RLS. Yes, it's a living nightmare. However, the medications I take do make a significant different in helping relieve my symptoms.

I now spend my time with volunteering and I am in the process of becoming an area volunteer for the WED Foundation so I can help support others with this disease.

The key to battling this disease is to keep busy, not isolate yourself, make friends who understand your disease, and be proactive in helping others who are newly diagnosed.  And, of course, spreading the word about WED/RLS with your physicians and your community.

Monday, July 15, 2013

Guest Blogger: Sleeps What I Miss by Annmarie Lindon

SLEEPS WHAT I MISS

The silence so loud
Just my thoughts in my head
I’m beyond my exhaustion
As I lay here in bed  

 My body so tired
It just wants to give in
To rest its weary bones
When will sleep begin? 

My legs hurt so badly
You don’t understand
It starts at my toes
And ends at my hands 

I shake them and bang them
Walk the floor all night
The feeling of helplessness
Relief nowhere in sight 

Why does this happen
No one can tell
Will the pain ever end?
It puts me through hell 

I’ve tried all the medicine
Sleep studies and such
From doctor to doctor
They can’t give me much 

I just want to get sleep
One night without THIS
It’s the feel of relief
That’s what I miss 

2-1-11Annmarie Lindon

About the blogger: I'm 46 and have been suffering with WED/RLS since I was 12 years old. Back then it was growing pains but I knew it was much more. It wasn't until I got married in 93 when a name was put to it for me. My world changed. I'm NOT CRAZY!!! Unfortunately it started with both legs and then moved to both arms. It is not just the "drive me crazy" feeling but the pain that goes along with it. I'm on numerous Rx for WED/RLS and insomnia. I pray one day soon there will be a cure or at least 1 pill that will work for me. Until then I stay up every night and write.

Wednesday, July 10, 2013

Awareness Cartoon Series: 1 of 12

The Foundation is working with an artist to design monthly custom comics to educate individuals about the seriousness of WED/RLS and help increase awareness of the disease. The cartoon size will range from 1 to 4 panels each month and will be in full color.

We are looking for ideas on what to name the cartoon series. Please send any ideas to info@willis-ekbom.org. 


Do you have suggestions for future cartoon ideas or want to discuss some ideas with us? Please contact us at info@willis-ekbom.org or correspond with Kathy Page at CentralMissouri@rlsgroups.org. Kathy is working with the cartoon artist to generate monthly ideas.

Monday, July 1, 2013

Guest Blogger: Robert R. Hampton's Painting

We received this digital image of a painting done by a new member years ago. He has WED/RLS. It reminds the Foundation of our logo. What do you think?



Meaning behind the painting:
This painting, like most of my work, was painted to show, (in a painterly style), the thought processes related to maturation in the infant and child as to the perceived concepts of the world around them. The top part shows the whimsical and unorganized concepts of reality, (and RLS!). An infant may realize and conceptualization..shapes and concepts and meanings arranging and rearranging themselves around a central awareness. (which will, later, turnout to be themselves or which later will turn out to be themselves and what remains).

The bottom, "panel" represents the caricaturization we all apply to reality as maturation runs it's course... Superimposed are doors, (our choices) we either open or closed.

In one of these doors I show a slab of bacon, (painted with real bacon grease), [I was a poor artist]) which represented to me a decision-making process I experienced as I started to sell my stuff.

As can be seen, (in this work and most others I do) this has metaphysical/religious undertones and can be also interpreted along it's own lines, (this is the basis of that maturation I talked about).

About the blogger: I just PAINT! I am 68 years old and have had WED/RLS since 1958. My twin also has it. I took Requip and then Merapex for the past five years for worsening WED/RLS. Robert R. Hampton, Artist in Residence.