As I stated in my last blog post, I decided to temporarily come off of my miracle drug, Sinemet (AKA L-Dopa), in an attempt to raise awareness of Dopa Responsive Dystonia (DRD). This was a lot more difficult than I thought it would be and quite frankly I'm not sure how I lived like this for three decades. I'm no longer the strong woman I once was. I can no longer live with muscle cramps, spasms, a leg dragging behind me with a tip toe walk. And I certainly can't do it with a smile on my face like I did for years! My life has drastically changed for the better and I will forever be grateful, but I can't help but feel that I have to help others who are misdiagnosed, like I was for 33 years! Yes, I know that DRD is very rare, but if my story can help just one person, then everything I went through will be worth it. Please help me spread the word about DRD by sharing this video. Thank you so much for all your support!
I've learned so much about myself this past week, while I came off of my l-dopa. Yes, you read that correctly... I came off my miracle drug.
Back when I thought I had Cerebral Palsy (CP), I rarely let anyone video tape me. Not many people like to be recorded and with my physical abnormality, I'd avoid being recorded at all costs! That means I have very little documentation to show how difficult my walking really was. When I took l-dopa for the first time, I had no idea that it would be so life changing. I know that there are other people out there who are misdiagnosed with CP, like I was for three decades. If my story helps one person, it will be worth it.
I stated at the beginning of this post, I learned a lot about myself while coming off the medication. First, I never realized what a strong woman I was. Honestly, I'm not sure how I stayed so positive with muscles twisting in every direction, pain and the struggle to get from A to B. It's only been four years since my DRD diagnosis, but I had forgotten how my body would go into full spasm when there was a loud sound or if someone bumped me as they passed by. Life with this debilitating disease is NOT easy when you're not medicated correctly. I also learned that it's okay to take some time for myself. Because I was so limited this past week, I spent a lot of time watching television, reading and just playing on the floor with my boy. These past couple years I have been so busy making up for lost time, that I forgot what it's like to just sit. Sure, it gets boring after a week, but once in awhile would be a welcomed treat for me.
Anyway, I'm back and will begin sharing my video diary of me coming off my medication (as well as coming back on it) next week!
Over the past couple years, I have met some wonderful people on different Dystonia Forums. Together, we are all trying to raise awareness about this neurological disorder in hopes of making September an official Dystonia Awareness month. My friend Holly Saltzman has graciously agreed to share her story on my blog. I have to personally thank her for writing the post below. To learn more about Holly and view her blog, click the Button below.
I have Dystonia. Well, Doctors say it is atypical, and tell me it’s caused by conversion disorder (which is a whole other story) but it doesn’t change the fact that my muscles twist and spasm and make life difficult. Dystonic spasms are when opposing muscles pull against each other causing movements or odd positions of the affected part of the body it chooses to attack. These spasms can be quite painful. For me, sometimes they can just keep twisting until I don’t think it’s possible it can twist any more and then it does anyway. It can be enough to make one scream in pain. It’s not always that severe, but more often than not it is uncomfortable and makes trying to live life more difficult, and at times downright debilitating.
Imagine having to fight your muscles just to get dressed, or to try to fix the simplest of meals... Sometimes it’s impossible, but usually I try to push through, I’m a determined person, and well, my family needs me. There were many times I had to make sure I was safely seated before holding my baby, afraid I would fall or drop him or her if I tried to carry them while walking. We learn to adapt, I’ve modified things, but have to continue modifying things as my condition has progressed and gotten worse. I now can’t drive due to my spasms, both in my limbs and back as well as my eyes. I don’t want to put my children, or anyone else on the road at risk because of my inability to be sure I can drive safely. I sometimes wonder if I will ever be able to drive again, it would be a wonderful thing if I could! I dream of being able to be able to do more things with my children, without my body holding me back. Maybe someday that will happen... But, maybe not. I’ve learned to make the most of today because I don’t know what tomorrow will bring.
There are all different types of dystonia, depending on what part of the body it affects or whether it is the main symptom, or secondary to other disorders and diseases. It is often misdiagnosed, and treatment options are not always all that effective, or the side effects are worse than the disorder itself. I dream of a day that first of all when it will be well enough recognized that people don’t have to suffer through being misdiagnosed, or when symptoms get severe that they can go to the ER for help and actually get help. Ultimately I hope for a day that a cure can be found, and that some cases even be prevented. Would you help us with that goal, by signing a petition to make September a Nationally recognized Awareness Month for Dystonia? It would only take a couple minutes of your time and help thousands of people. If you do, I thank you from the bottom of my heart!
Signing the petition is as easy and you will be making a difference. Click the button below to sign the petition and help us to bring awareness to Dystonia.
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!