September is dystonia awareness month and I want to help, share and give hope to people suffering from this horrible condition. It’s been almost 2 years since I’ve written a blog about my journey with dystonia partly because of the overwhelming challenges of brain infections, 2 more DBS surgeries and the frustrations of reprogramming the electrodes in my brain. During this time I had to resign from my head coaching position, manage all the medications/side effects and live with the challenges of a pain level that I can’t even put in writing but I also had some amazing discoveries.
Klonopin is one of the drugs prescribed to treat dystonia and it does help. The short and long term effects, however, are quite alarming. I’ve taken klonopin for about 13 years and tried several times to stop taking but either my body was addicted to the drug, the dystonia symptoms were too hard to handle and/or the withdrawal side effects were too powerful so I kept failing.
I made a decision to start klonopin tapering in January while spending time with a long-time college buddy who was going through cancer treatment. My friend Tom was fighting lymphoma and getting chemo while trying to workout and prepare for a road-trip celebration to The Masters Golf Tournament. We would talk, exercise and discuss challenges of both conditions 4-5 days per week. This inspired my decision and motivated me to stay the course. I did research, consulted my Doctor and read extensively on the challenges of this endeavor. Once I was klonopin free the first 3 weeks were more miserable than I could have ever imagined but the research suggested that the body and mind will continue to get better so I pressed on. I’d be a liar if I didn’t write how extremely difficult it was both physically and mentally.
After a month my body was adjusting and surprisingly my dystonia symptoms were improving. Today, September 12, 2016 is day 201 – klonopin FREE. dystonia is still there but the good days are more frequent and the almost good days have become somewhat more manageable. Not sure if this path is for everyone but having gone through 3 DBS surgeries and 11 battery changes – I decided eliminating medications was better for my body.
My friend Tom made it to The Masters, is cancer free and back to work!! I had to resign my head high school coaching position in April 2015 but improved enough to try again in November 2015 – coaching middle school girls and boys basketball. March 2016 I was healthy enough to apply for several head coaching jobs including the first college position in over 13 years. Unfortunately, I didn’t get any job offers but my health is continuing to improve and Hoping for an opportunity to share my passion = Coaching Basketball!
My body is operating on a daily-rechargeable brain-battery and I still run with a tennis ball but I don’t have to bounce all the time and managed to run several 5k’s and a biathlon this Summer while wearing my dystonia shirt “I run for those who can’t” and my dystonia hat “Freedom of Movement”. Hope this helps inspire, educate and motivate those suffering from dystonia to keep searching, trying and raising awareness about this brain disorder so a Cure can be found.