As you are all aware, I share my journey of misdiagnosis to help others. When I went on the Today Show, I knew that others would see my story and think, that's me! I'm pleased that my guest blogger, Tara Richardson, was one of those people! Over the past few weeks, I've had the privilege of hearing about her improvements, some are small and some are just plain awesome!
Rare Genetic Disorder DRD Mimics Spastic Dipligia
It’s been a few weeks since I started taking Sinemet (Carbiodopa/Levodopa) to see if I had Dopa Responsive Dystonia a rare genetic disorder that mimics Spastic Dipledga.
From everything that I have been told about DRD is that if I had it, then I’d see changes, and if I had Spastic Dipledga then I wouldn’t see any changes.
I’m pleased to say that I have seen changes. Some are minor, and some are big changes. Eventually, I’ll be walking by myself like everyone else. I’m incredibly weak since I’ve been using a wheelchair for 20+ years. I need to build up strength in my legs.
I’m enjoying the process, and it’s honestly scary at the same time. I wake up in fear that I won’t improve any further than I have, or I’ve imagined it and it’s not truly working. (crazy talk, I know)
Imagine living with a profound disability with no cure, and you get worse year by year while all your other friends with “CP” are maintaining what they have gained. You are the only one regressing when in fact, you were far better off than them in the beginning.
I suffer from chronic pain/nerve pain due to the imbalance in my body over the 44 years of my life. I’ve had dozens of surgeries to correct my stiff muscles and straighten my feet and wore braces until I ended up in a wheelchair full-time by age 19.
Now imagine that one day you woke up and your friend sent you a story about a woman who had been mis-diagnosed as having Spastic CP for 33 years when, in reality, she had Dopa Responsive Dystonia, a genetic rare disorder that mimics Spastic Dipledga.
I read her story and thought wow great for her that’s awesome. I had never heard of DRD before. A week later, I saw the video Jean Abbott made before & after her medicine and was shocked. I thought that could be me. I listened to her story and watched the video in a blink of an eye my life changed forever.
I quickly contacted Jean on her Facebook page and while I had been waiting for her to respond, I looked up the diagnoses and thought that I probably didn’t have it based on what I read. My mind quickly changed once I started talking to Jean Abbott, she confirmed all my questions and was kind enough to answer them all.
I couldn’t get to the doctor quick enough. I printed off all the information and gave it to my doctor who read it and she did her own research, and she thought it would be worth a shot.
It’s been two weeks, and my life is changing. My spastic muscles are gone, and I can move my feet & bend my knees independently. My balance has improved 100%; I can hold on to things and move around. I have taken a few steps by myself, and my toes are relaxed.
I’m more aware of my body then ever before. The slight change in balance the bending of my knees the ease of movement is all new to me. I’m no longer dizzy when walking.
I’ve been working hard to build up strength in my legs and my core. It’s taking a while since I’ve been sitting for so many years.
I will keep you posted on my recovery…
To learn more about Tara Richardson and see her amazing artistic ability, please check out her website at http://www.taraleerichardson.com
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!