Hi, I'm Patrick Anderberg.

I was diagnosed with cervical dystonia in 2013, at age 23 after experiencing a year of symptoms without knowing what was wrong with me. After being referred to a neurologist and having my first MRI, I was diagnosed with spasmodic torticollis, or cervical dystonia. At the time, I did not know of any treatment options as I had never heard of dystonia before. I was not informed of Botox until talking with a therapist a couple years later who mentioned it. My initial treatment plan was simply nonexistent. I went in, knowing something was wrong, came out of it knowing what it was called, but not what to do about it. I dropped out of college and for 10 years struggled with addiction, depression and severe social isolation. I also experienced deep feelings of embarrassment, shame and hopelessness.

I have worked very hard — over the last four years especially — to not let dystonia control me or define who I am or what my life will look like. While it took a lot of failures along the way, including four times going to in-patient treatment centers, countless therapists and nights in the hospital, I have managed to keep my physical and mental symptoms in a place that allows me to participate in life again. I stay on top of my treatment plans with no exceptions and work in partnership with my neurologist. I now feel like I am in control of my treatment plan. I still struggle often, either with depression or physical pain, and that may never change with a chronic disease, but I am okay with that now. I know what my coping mechanisms are and what works for me.

For me, the greatest medicine has been movement. I found that early on, with the jobs that I would take in my early adult life, that something that had me outside and moving was far more manageable than fighting to try to sit still at a desk. I do not think I would have been able to hold a job at all if I didn’t accept this reality in my 20s.

I am running the Grindstone 100 in September to prove to myself more than anything that I am extremely strong and resilient and that there isn’t anything I can’t accomplish if I put in the work for it. Besides the strength and confidence gained from doing hard things, there is also a substantial relief from pain and anxiety for me when I am running. It is also a community of incredibly kind, empathic, and strong individuals just as those of us with dystonia are.

While I had never originally planned on making this — or any other part of my life — public, I am hoping that in doing so it may help someone else who is in the situation I was in 15 years ago to not make the mistakes I did.

My dystonia has been progressive since my initial diagnosis, but I have now found ways to better manage my symptoms and regain my self confidence while also finding joy and love in life.

While, from my personal perspective, things seem better than they were 15 years ago, it is still a disorder that does not have the awareness and funding it needs and warrants. And that’s why I’m running the Grindstone 100 — to raise visibility, understanding and much-needed funds for the DMRF to continue fueling research into better treatments and hopefully a cure, as well as offering support programs and resources to the dystonia community.