It seems impossible to me, in this day and age, that there are conditions / illnesses that have no cure. How can it be that there can be something 'wrong' with you and there is no medical expert or medicine that can, if not cure it, manage it. How can this be the case? Surely somewhere, someone must be able to fix it and / or make it better?
My sister has Dystonia. I am heartbroken for her. She got dystonia two years ago by taking some ordinary, common, widely prescribed medication. It triggered something in her system and just like that, she had dystonia. She has dystonia in her mouth - her tongue, palate and jaw. Which means that all day, all the time, her tongue, jaw and palate spasm involuntarily. Hard, repetitive, uncontrollable, involuntary, painful spasms. Can you imagine living like that every day, all day? Trying to talk while your tongue is going crazy? It is devastating. I am devastated for her. She doesn't want pity, she doesn't even want sympathy. What she wants is a cure. And SURELY there must be a cure?! If the dystonia started with medication, why can't we find medication to control it?
I have readers from all over the world - do any of you know anyone or any expert or anything that might help my sister? She has seen someone about Deep Brain Stimulation but apparently isn't a candidate for it. She was originally refused Botox treatment for it, for fear of her choking, but she is going to try some Botox in her jaw and palate soon. She has also tried lots of medication, but nothing seems to work.
I refuse to believe that this is how it will be forever. Yes, she has dystonia, and maybe the dystonia will always be there, but there MUST be a way to make it easier / better for her to function on a daily basis. There has to be a solution. There just has to be.
Please read her blog post about living with dystonia, it is very raw and very real. It might give you an insight into what it is like living this this terrible disease. http://singaporefling-mel.blogspot.com/2014/09/life-with-dilbert.html
September is Dystonia Awareness Month. We have done the pink ribbons (and silly FB bra posts) for breast cancer, we have done ice-bucket challenges for ALS. Please can you just spend 5 minutes of your time reading my sister's blog post and learning just a little bit more about this terrible disease. Wikipedia article on dystonia: http://en.wikipedia.org/wiki/Dystonia
To my dear sister, I know you don't want people to feel sorry for you. And I know you don't want to be considered a hero or an inspiration (because you would FAR rather not have the kak to deal with. Please can someone else be the hero). But I will say I am firstly really sorry that you are having to deal with this really, really difficult challenge, and secondly I am very proud of you. Not for being brave; you are brave because you have to be, you don't have a choice. I understand that. I am proud of you for still finding joy in your every day life, living life as fully and completely as you can, even when there is so much pain and struggle to deal with. Because THAT is being brave. I love you.