The WEGOHEALTH Activist 30 Day Writing Challenge Day 7

“Was starting your advocacy journey a hard
decision? Were you anxious and hesitant or were
you excited and ready to share your story? Tell us
how you chose to start advocating for your
condition.”

In 2010, after I was diagnosed with a traumatic brain injury, I had in-home rehabilitation. The therapist that came to the house got me on the computer and helped me get set up on Facebook. She said that getting into online support groups was going to help me get connected to other TBI survivors and help in my healing process. I went into them thinking that I would find a “how to” recover from brain injury, but that was not the case. In fact, I found a lot of people in pain, looking for answers and help. I immediately thought that was unacceptable but I was too much in need myself to do anything about it. So I read, and read and read. Sometimes the same page over and over because I didn’t understand or remember it, but I got it eventually. 

I would share my story with anyone who would listen. When I saw that my options were limited and my recovery was slow, I started advocating in an attempt to facilitate things.  I was terrible at it when I first started because I suffered from panic and anxiety attacks due to the inflammatory response going on in my brain. Migraine and vertigo were always present. I was also dealing with sensory overload, sensitivity to light, sound, with visual and physical movement. So, it was years and years of online education and physical therapy that eventually morphed into advocacy just because I needed to explain my condition and my frustration about the lack of services available, patient education, therapy and counseling. 

When I was diagnosed with dystonia, four years later, I wasn’t eager to accept the “no treatment, no cure” information. I began looking for “cures and treatments.” I started writing about my experience and others experiences with dystonia. I became very passionate about awareness because I had never heard of dystonia and most people I met hadn’t either, including the doctors that I had been going to for help. That was ridiculous to me because the ignorance was causing misdiagnoses and unnecessary suffering. I didn’t want someone else to go through what I was going through, so I tried to join in the  awareness campaign. 

However, I soon found out that there was to be no “cure” for me. I had to face that reality. I then turned my attention to coping, grieving, self-care and maintenance. It is a daily struggle. I’m still learning how to deal the dystonia diagnosis. 

If you have dystonia, you really have no choice but to advocate for yourself. Very strong medications with side effects, that need monitoring and adjustments, or deep brain stimulation surgery are the two choices that the medical professionals offer. It’s up to the patient to look at what fellow sufferers are doing to relieve their symptoms and then talk with the doctors about it. Staying up on what’s going on is vital to keeping a positive attitude. It also feeds your hope and faith that you will be able make a quality life for yourself. In this process, comes awareness by way of involvement with support groups and the organizations around the globe that are dedicated to finding a cure for dystonia. 

Last year, the Micheal J.Fox Foundation for Parkinson’s Disease joined with the Bachman-Strauss Foundation for Dystonia. Together they are working to find a cure. https://youtu.be/QUrMCUQzc_M That’s exciting.

 Micheal J. Fox has both Parkinson’s and Dystonia. He gets facial spasms like me. That knowledge is very helpful and I use it to educate people when I have facial spasms in public. Somehow, their knowing that what I’m experiencing is what Micheal J. Fox experiences, makes my facial spasms have validity. They tend to feel more compassion for me instead judging this odd situation with ignorance. That’s what promoting awareness is all about. It creates education and interest instead of fear and avoidance with something that looks so strange and scary. 

Once people understand that it’s a neurological disorder, they are then open to discuss it more with you. That doesn’t make dystonia less painful, but it does make people’s reaction to it less of a negative experience. 

That’s pretty cool. 

To learn more about dystonia, please visit DMRF.org 

dystonia.org.uk 

http://www.ninds.nih.gov/disorders/dystonias/org_dystonias.htm

http://www.torticollis.org/

Click to access alan%20worldwide.pdf

For brain injury, please visit the FB page I co-admin with fellow WEGOHEALTH nominatees, Trina-Chambers-Bradlee and Angela Ronson 

The Traumatic Brain Injury Resources Page https://m.facebook.com/Traumatic-Brain-Injury-Resources-608238092646488/

The FB pages I made to as a result of my quest brain health and advocating for invisible disability are: 

https://m.facebook.com/Brain-Tears-849165151864890/

https://m.facebook.com/Pain-Brain-Anti-Inflammatory-Foods-884868631551718/

https://m.facebook.com/The-Invisible-Wheelchair-Disability-Education-Page-1599733076911002/

You can find my writing page at: 

https://m.facebook.com/janicetindlewriter/