September is coming up, the month for dystonia awareness. So much has changed in a year! Last year I was still desperate to be heard, to find someone who would take my case and offer a treatment plan to ease my suffering. I had just again been told my best bet was stress management and maybe add some antidepressant… I put much of my focus and energy into helping with the dystonia awareness campaigns, I shared many other peoples stories here, as well as my own, I begged people to sign the petition, and joined in other efforts as well on various social media sites. (you can find the blog posts and stories in the archives below under September 2014)
This year, I have a doctor who is working hard to insure I have a treatment plan that actually works for my needs and help suppress symptoms. I am blessed to finally be here after all these years. I’ve shifted my focus to trying to get the most out of these years of having little ones at home (I did that before, but now that the urgency of finding someone to treat me is gone I can do it with a whole new perspective). I need the break and I am still trying to figure out how to live life without letting my disabling disorder dominate every aspect of it.
I will not be able to join in this year with spending a lot of time and energy on the awareness effort. I am thankful for the many people who are. We need it. There are many who still need better care. I still need it, because I will continue to need care in the future…
I do not plan to write a whole series of blog posts this year. But for just today I’m back with one special request from anyone who may read this to go to this link and sign the petition to the white house to officially make September Dystonia awareness month. Yes, I asked everyone to sign one last year… We were encouraged by how many took the time to sign but it fell short of enough signatures to be heard. They have set it up again this year, and have reason to hope that we will get enough signatures this time around. We need 100,000 signatures by September 24th. With your help, we can do this!
From the petition: “Despite being the third most common movement disorder, most have never heard of dystonia. Affecting an estimated 500,000 people in North America, dystonia causes the brain to send improper signals to muscles, resulting in awkward, often painful, movements and postures. Dystonia affects people of all ages and can make it difficult to perform even simple tasks like walking, talking, eating, drinking, and even breathing. There is currently no cure for dystonia and it is not unusual for people to wait years to decades for a diagnosis. Having an officially recognized awareness month will bring much needed attention to this disorder and hopefully lead to prompter diagnoses, better treatments, and some day a cure. Please take a minute to add your signature. You could be changing someone’s life.”
Here is the link. All that is required to have your signature count is your name and email address, click the “sign now” button, and then once you receive your email for verification click on the link that says “confirm your signature by clicking here” and that is all. Thank you so very very much from all of us.