For some reason I don’t remember a lot about my childhood. But, I remember being sick a lot. I remember when my friends were outside playing, I was sometimes laying on the couch with a nauseating headache and a tickle in my throat. I remember even when I felt ok I still had a cough and when my mom would bring me out in public everyone would stare at me and be afraid they would get it. Nothing I had was ever contagious though. I was tested for whooping cough more than once and it was never positive but I still had to be out of school for days to wait for the results. I remember when I was in second grade I had to have an MRI of my brain because my headaches were so bad. I used to tell my mom it felt like there were marbles rolling around in there or someone inside my head with a hammer. My mom and dad tried everything to help me, bringing me to many doctors and even health food stores to find out I had a sensitivity to dairy.
When I was 12 I started having different symptoms, mostly in my shoulders. I dislocated my shoulder for the first time at cheerleading practice. I iced it, put a sling on and thought I’d be back practicing the next day. Little did I know this would be the start of a living nightmare.
After many ER visits, X-rays, MRI’s, bone scans, 6 surgeries and physical therapy over the next ten years, I was finally diagnosed with dystonia. We’ll never know if my sicknesses throughout my life were caused from dystonia but I have a feeling they were. I’ve had neck pain and headaches my whole life and besides falling and bumping my chin when was really young, no one has figured out why I’ve had this pain. The cough, well we’ll never know but I sometimes wonder if I had a form of dystonia called dysphonia. It has gotten better though with having my tonsils out and growing so I’m not sure.
In 2011 I had a deep brain stimulater placed that changed my life. Unfortunately over time it broke and I had to have it redone. This time, it hasn’t been as successful. I get Botox every 3 months that seems to help with my hand but my left foot hasn’t been straight in over a year. This has made walking hard, sore legs and feet and part of the reason why I have gained weight.
I try to stay positive and although my dbs isn’t working, I constantly try new things to help and try to find new doctors that might have an answer.
I know most of you already know my story but the reason I’m sharing this again is because I so badly want a cure for dystonia. This story is why I put the effort in year after year to hold a walk. I’m not doing it for fun or to beg people for money. This walk has never gotten as big as I want it to but every year when I mail a check into the Dystonia medical research foundation, I know I’ve done a small part in raising money for research. And even if there’s no cure found in my lifetime, I hope I can help at least one person get diagnosed and treated sooner than I did. I share my story so when people have odd symptoms that no one can figure out they can keep dystonia in the back of their minds and get help.
I hope my story encourages people to fight.
If you are interested in walking, donating, sponsoring or even just telling a friend about the dystance 4 Dystonia walk please click the link below. Feel free to email me with any questions. I can’t thank you enough for all your love and support, the walk would not be successful without all of you.
Asleeper14@yahoo.com
I can really relate to her.
ReplyDeleteAnd I lived in Nashua New Hampshire when I was diagnosed.
Don't ever give up.
I will sponsor you too.
Congratulations on walking for Dystonia