Tonight as I was flipping through the channels, deciding if I was going to write, I found a documentary called “Living with Parkinson’s”. As I’ve written before, Parkinson’s and Cervical Dystonia are related neurological movement disorders. Dystonia is a symptom for some people with Parkinson’s, and both of them have fatigue and anxiety as two of the symptoms. What is the main difference between these movement disorders? Most people know what Parkinson’s Disease is or have at least heard of it, while cervical dystonia remains a foreign language to just about everyone, including doctors. While I watched the first ten minutes of the program, I was inspired to see a woman in Ireland striving to find activities that will help others like herself who suffer from PD. She’s a pioneer, and I aspire to be like Mags. I am building a road that hasn’t been constructed yet, which is never an easy task.
Through this blog, I want to teach people what cervical dystonia is. I want to be someone who brings cervical dystonia into the limelight so that research will be funded for the purpose of finding a cure. I want to secure funding for a space where people with dystonia can stay when they need help with basic daily chores, like I do. And I want to be the person who can also offer wellness activities for anyone with dystonia in that same space. When I win the Publisher’s Clearinghouse Sweepstakes, this research and wellness center is what I will invest my winnings in. I’d love to see a documentary on cervical dystonia on PBS, and it would be amazing to have an annual international conference that cervical dystonia patients can attend. As of now, the annual conference for Parkinson’s is the only medical convention where patients can attend too. If you are lucky enough to see the whole movie, you will see how exciting such a conference would be for people who live with this debilitating disease every day. It would be a dream come true to see this be an opportunity for cervical dystonia patients, as well! To have our own conference with experts in the field who can give us strategies for managing our pain…To congregate with others who are just like me with their physical symptoms…And to speak with neurologists and doctors who are conducting studies all over the world…I can only hope.
In the meantime, I have to fight to make sure my long-term disability continues to be approved. While I have been told I am disabled by my doctor, my two pension funds, my school district’s long-term disability company, Metro Mobility, and the people who send out Disability Parking placards, I found out this month that my appeal for social security disability was denied. “Why?” you might ask. One of their main reasons was because I can use my hands and arms. Seriously! While I was frustrated that it took ten months for them to reach that decision, I was even more disappointed in my attorney from the Social Security Advocates for the Disabled, who did nothing during those ten months to find out why it was taking so long to make a decision. I now have a local law firm that specializes in Social Security appeals, and they have put in the request for me to appear before a judge. I’ve been told this is much more effective, since the judge can actually see the fact that I can’t hold my head up on my own when I appear in person. As I did some research regarding dystonia and social security disability, most of the information I found was that most doctors don’t know what dystonia is. So I have one evaluator + one doctor determining my fate, neither of whom knowing what I actually have.
I have to admit I’m getting tired of having to prove that I am in pain all of the time. But if I’m not fighting for myself, then who will? It’s a full-time job just trying to get through each day, but when I am constantly having to fight for the meager income so I can meet my basic survival needs, battle it out for two months with my employer to make sure I am still covered for health care and dental care, and to deal with any number of stressful things that affect my ability to take care of myself, it feels like I’m back to working 80-100 hours a week. That’s the toll it takes on me physically, in addition to the symptoms I already have. So I must relinquish control of things I cannot control, be aware of the things I can, ask for help, speak my truth when it comes to needing to meet places that allow me to attend because I’m the only one in a group of people who physically can’t drive, and don’t sweat the small stuff. I just hope that what I am doing helps even one person. Then the journey will be worth it.
My Hopes: I hope that you will be able to find access to the PBS documentary described above. And then think about how wonderful all those things would be if they were open to patients of all neurological movement disorders. I also hope you will teach one person what cervical dystonia is, based on what you’ve learned through my blog. Feel free to share this with that person. Who knows? The recipient of your knowledge may be the next doctor or evaluator who determines the fate of someone with dystonia. To lighten that patient’s load would be appreciated beyond your wildest dreams. Truly!
And I hope I have the energy to continue to put my health needs first, while being aware of others who may be threatening to take something vital (like my health care) away from me. My dream is to travel this road and document it so that others don’t have to. Those who are diagnosed years from now should be able to know this is not what the remainder of their lives will be like. You know the old saying, “The more, the merrier!” Well, the more people who connect and travel down this road together can only mean a better life for everyone. At this point, most people in the world don’t even know this road exists. But you and I do, so let’s do our part to make it a smoother path for everyone.