JEAN SHARON ABBOTT
  • Home
  • About
  • Speaking
  • Blog
  • Memoir
  • Contact
  • Dystonia Resources
    • Media
  • Event Planners

to those who think my blogging is selfish

7/10/2016

1 Comment

 
Picture
I spent my entire life trapped in my own disabled body (thinking I had Spastic Diplegia), unable to do simple everyday tasks that others took for granted, only to find out that I had been misdiagnosed.  At the age of 33, I was given a whole new life!  As a result of my new treatment for Dopa Responsive Dystonia (DRD), everyday I was doing something new and exciting.  Not adventures thriliing  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 adventrues on my new medication of L-Dopa!  And all I could think was, if I went misdiagnosed all these years, then surely there are others out there trapped in their spastic body just like I was.  I knew that I had to put myself our there in hopes of “rescuing” others. 

Yes, I blog about myself.  Yes, I share the excitement about completing simple tasks, that most tweens have already mastered.  Yes, I talk about my struggles and that this new diagnosis is “not a cure.”  And Yes, there are people out there who think that 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, news paper or news show, I’ get an e-mail from one of their viewers…

“I am 42 years old and was just diagnosed with Dopa Responsive Dystonia 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 & 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 my self…. 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 (either can my neurologist and P.T.)”

And 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 that 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 at times, and that plays havoc on my DRD symptoms, but in doing so I have helped 20+ people receive in receiving a correct diagnosis of DRD.    When I open up 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 that some may see my blogging as selfish, but please understand I only do it to help give others the freedom that I now have.    And to me that is an amazing gift!

​

1 Comment
Jasmin
2/7/2020 09:53:33 am

Hallo Jean,
Deine Geschichte ist wie eine Kopie von unserem Sohn 19 Jahre, vor fünf Jahren fing bei ihm das DRD (Segawa Syndrom) stark an, sehr fortgeschritten auch bis zum Rollstuhl. Seit gut zwei Jahren hat er das Medikament L-Dopamien. Wir sind sehr dankbar, dass wir einen neuen Arzt gefunden haben wo sehr schnell die Diagnose erkannte, die Jahre zuvor waren der absolute Horror.
Ich lese so gerne deine Geschichte, da fühle ich mich vertraut und merke wir sind nicht die einzigen wo ein Kind haben mit dieser Erkrankung. Es tut gut nicht alleine da zu stehen.

Reply



Leave a Reply.

    Author

    After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this! ​

    Archives

    August 2020
    June 2018
    April 2017
    March 2017
    February 2017
    January 2017
    November 2016
    July 2016
    March 2016
    December 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    April 2012
    December 2011
    November 2011
    October 2011
    September 2011
    August 2011
    July 2011
    June 2011

    Categories

    All
    Attitude
    Cooking
    Dopa Responsive Dystonia
    Faith
    Guest Bloggers
    Media
    New Adventures
    Question Of The Week/Vlog
    Speaking

    RSS Feed

  • Home
  • About
  • Speaking
  • Blog
  • Memoir
  • Contact
  • Dystonia Resources
    • Media
  • Event Planners