Restless Legs Syndrome Foundation Blog

Guest Blogger: Disabilty for WED/RLS by Shawn McDowell

Monday, July 29, 2013

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.