Has it really been a week since my last blog entry??? How can that be!! I feel like the days are flying by and I'm not getting as much done as I would like. I've been busy working on my speaking, working on my memoir, updating my website and answering e-mails from people who have seen my story over the past few weeks (my favorite!).
Yes, I love that people are reaching out to to inform me that they find my journey both inspiring and hopeful. Better yet, I've had eight people tell me that they had a successful trial of L-dopa and are seeing results. Yes, I said EIGHT!!!!!! That's eight people who feel stronger than they did one month ago. This is why I share my challenges with the world. It really does help people!!! Please continue to share my story with your friends and family, so we can help even more people.
As always, I want to thank you for your support. If it wasn't for all of you who read this, I don't think my story would have gone viral and helped so many dealing with the same issues as me. I truly feel like I have been given an amazing gift and wouldn't change any of it!
It's hard to believe that my little boy is three today. I was so excited to make him a Mickey Mouse cake for a couple of reasons.
First of all John loves Mickey Mouse just as much has he enjoys eating chocolate cake!! But more importantly, I just enjoy making cakes for my kids on their special day. Sure, I may have had a DRD moment (sudden jerk of my hands) and the sprinkles flew every where expect where I wanted them to go, but my little boy doesn't care. He loves how the cake turned out and keeps asking, "Is it time for cake yet?"
I was never able to make my daughters cute cakes when they were his age. I would buy a princes cake of some sort from the local bakery and have to call it good. Sure, they were thrilled to have a super cute dessert, but I love it that John will grow up having homemade a birthday cake year after year.
Sure, this mouse may have some sprinkles in the wrong places, but back in the day I could barely frost a cake. And the thought of piping homemade butter cream, never even crossed my mind. Plus, the way I see it, if John doesn't care about the mistakes his mommy made, then neither will I!
Happy Birthday, John!!
Twenty years ago, I was just about to finish up my first year of college. It's funny to see how far I have come and how much my life has changed.
This morning I had the privilege to be interviewed for the Winona State University Currents magazine. I alway enjoy reading this subscription and am honored to know that I will be a part of their future issue. As I spoke with the editor about my college experiences, I couldn't help but smile knowing that completing college was a dream of mine.
I'm really starting to realize that I have so much to be proud of. I graduated from college in four years, I'm a very involved mom, I help others by advocating about Dopa Responsive Dystonia and I was on the Today Show. Knowing that I have been able to accomplish all of that makes me realize that I can and will be a published author. I just need to continue searching for the right literary agent/publisher and in time Rainy Day Friend...The Journey From Wheels to Heels will be on the shelves of some of my favorite book stores. I've never been one to give up and I'm not about to start now!
I always had really big dreams as a little girl. The thought of being on TV thrilled me. Someone needs to pinch me, because I'm pretty sure that I achieved one of those dreams today! How can it be that my face along with my words were on The Today Show? I was given a platform to advocate about Dopa Responsive Dystonia to millions of people. What an incredible gift that fuels my fire to work even harder to achieve my other dream...to write and publish my life story.
Since my correct diagnosis, I have been writing memoirs about growing up with Spastic Diplegia, a form of Cerebral Palsy. I would love, love, love to see it in print. I want to inspire those who are dealing with difficult medical conditions, express that there really is someone out there for everyone, and to remind everyone to appreciate the little things in life. Until then, I look forward to sharing my blog with all of you!
Thanks for all the support!!
Here's the link to the Today Show!! http://www.today.com/health/woman-misdiagnosed-30-years-gets-relief-simple-pill-t19806
The past few weeks have been unbelievably busy for me. As you are probably aware, I write this blog for many reasons, but one is to advocate for the Dystonia community. I have been sharing my journey via this blog for nearly five years. In the beginning I thought, I hope I reach 50 hits at some point! Little did I know that I would get nearly 4,000 hits in ONE DAY, which would then lead to an interview on The Today Show!!!! Many of you have asked, How did this happen?
A couple months ago, The Mighty shared a couple of my blog posts to their website. To my surprise, they asked if they could write a feature story about my journey for their website http://themighty.com/tag/jean-abbott/. Of course, I said yes, knowing that they work closely with bloggers to bring awareness for many disabilities out there. The day after that posted, I received an e-mail from an editor from The UK Daily Mail asking the same thing. A few days later, their story posted(http://www.dailymail.co.uk/femail/article-3047729/Woman-spent-30-YEARS-fighting-debilitating-cerebral-palsy-discovers-misdiagnosed-symptoms-cured-just-one-pill.html) and my phone began ringing off the hook. A week later, The Today Show was interviewing my family!
I know all of this is very exciting, but it has also been extremely stressful. My Dopa Responsive Dystonia requires me to get plenty of sleep, exercise and keep my stress levels low in order to keep my symptoms at bay. This has been a challenge these past couple weeks. I've had to rest more, stretch more and remind myself to ask others for help in order to keep my stress levels lower. Even with the extra effort my balance has been off, I've noticed more tremors in my hands, cramping in my muscles, my walk hasn't been as smooth and I drop more items than usual. With all that said, I am still very grateful for this wonderful opportunity and I could not do it without the support from my amazing husband, Steve. In fact, I don't think I could have done this without him. Scratch that...I KNOW that I couldn't have done this without him!
I must give a heartfelt thank you to The Mighty and the UK Daily Mail for finding interest in my story, so I can have the privilege of helping others. I am incredibly blessed knowing that by sharing my journey, many people will learn more about Dopa Responsive Dystonia and potentially speak to their physician about their own diagnosis.
Side note: It looks like our story should air Thursday May 7th on the Today Show. I will be sure to post a link to the segment after NBC links it to their website. Thanks so much!!
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!