Dystonia patient says you need to be your own health advocate

In 2002, Dana Pardo-O'Kane had just gotten a new job when the symptoms began. "What really was the worst was the pain around the bottom of my skull."

She had stopped taking a drug prescribed for acid reflux, and started having constant neck and shoulder spasms.  She was eventually diagnosed with "Dystonia", a rare neurological disorder. "I have to manually use my hands to straighten my head."

Dana had to give up that new job, and many other things she enjoyed doing.  There is no cure for Dystonia, but it was discovered that injections of Botox every few months would alleviate the symptoms.

Dana has been on Medicare and Medicaid since 2009 but said her local neurologist dropped her recently. "When I walked in for my follow up I was told by his receptionist that they had to drop all the Medicaid co-payment patients."

While a family member helps with the 21-hundred dollar injection bills, she had to find other help to pay for future doctor visits.  She found it through the National Organization of Rare Disorders. "And I had to apply and wait and wait and finally get approved so I can cover my own treatments."

Pointing to a painting her father did, she now doesn't always feel like the boater surrounded by the sharks. Still nothing comes easy for Dana.  She gets tired easily but often has trouble sleeping because of the muscle spasms.

As to this year's election, Dana's not sure if she's going to vote because she doesn't think any of the candidates have solutions for people like her. "No I feel like they all just talk the talk and get in for the job."

So in the company of her fish and her cats, Dana wistfully looks at pictures where she feels whole. "I wish I could go back to the old me."