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To Those Who Think Blogging About My Illness Is Self-Centered

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I spent my entire life trapped in my own disabled body thinking I had spastic diplegia, only to find out that I had been misdiagnosed. I was unable to do simple everyday tasks others often take for granted. At the age of 33, I was given a whole new life! As a result of my new treatment for dopamine responsive dystonia (DRD), every day I was doing something new and exciting — not adventures thrilling  to most, but certainly to me.  I had never put a frozen pizza into the oven, driven my kids to their activities and hadn’t showered independently in years! Yet these were my adventures on my new medication of L-Dopa! And all I could think was, if I went misdiagnosed all these years, then surely others might be out there trapped in their spastic body just like I was. I knew that I had to put myself our there in hopes of helping others.

Yes, I blog about myself. Yes, I share the excitement of completing simple tasks most tweens have already mastered. Yes, I talk about my struggles and how this new diagnosis is not a “cure.” And Yes, there are people who think I am only sharing my journey in hopes of being in the public eye, to get another story, simply for the attention or money. I must tell you, I’m not paid for the interviews I give, but yes, I want my story picked up in the media. It’s not because I want the attention.

It’s because every time my story makes it into a magazine, newspaper or news show, I get an e-mail from one of their viewers.

“I am 42 years old and was just diagnosed with DPD  due to your article in The Mighty.”

“At age 37 I have just been started on Sinemet. Your story got me looking into the possibility of no longer fighting to walk. I was first diagnosed with CP around age 12. I am happy to report it feels like a band that has been tied around my legs has been cut.”

“Jean! I am weeping tears of joy right now! My cousin was just here, in person…which is saying something as she was nearly completely immobile and left home only when necessary. Our family has had a miracle!”

“We are grateful to you because without your story, my wife would never know the improvement she has so far achieved.”

“One of my doctors was watching CBS when your story aired. She immediately called me saying she thought I was misdiagnosed. I started the medication 3.5 weeks ago and it has helped me greatly.”

“I walked in front of my mom and older brother this weekend. My mom was so excited she videotaped it.”

“I read your article and I felt as it I was reading about myself…. I have been on it (Sinemet) almost six months now and it is amazing, confusing and emotional. I can walk almost without a limp. I am not tired all the time and my balance is improving. I am going to physical therapy monthly and can’t believe the change (nor can my neurologist and physical therapist)”

Sometimes, my blogging doesn’t assist in a correct diagnosis, but it offers hope to those who no longer have any.

“My daughter’s biggest fear when she was in a wheelchair was — how could she ever get married? She sobbed crying asking how will I get down the aisle? Will one of my bridesmaids have to push me? Who would want to marry me if I am in a wheelchair? These are such hard questions to have to answer to your own child. Your blog gives people hope when doctors don’t! Thanks so much for spreading the word on Levodopa and reminding us all to count our blessings. Today you are one of mine.”

These are just a few of the reasons why I put myself out there. I find it stressful to be in the media’s eye at times, and that plays havoc on my DRD symptoms. However in doing so, I have helped more than 20 people receive a correct diagnosis of DRD. When I open my e-mail and see that someone is walking for the first time, it makes all the added symptoms worth it and I can’t help cry tears of joy. Yes, I understand some may see my blogging as selfish, but please understand I only do it to try to help give others the freedom I now have, as well as hope. To me, that is an amazing gift!

Follow this journey on

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 13, 2016
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