Sunday, October 19, 2014

Dystonia conference


Two weeks ago I went to a conference on cervical dystonia (hosted by the STDystonia group). My mom was my main motivator and being at the end of my first round of Botox I would not have had the guts to go without her. In fact, about a week before we went I was feeling so awful I called her to ask if we could bail and she talked me out of it. I'm so glad because I had such a good time, both hanging out with my mom (more on that later) and at the conference itself.

My lovely mom, who was my chaperone at the dystonia conference

Luckily, just two days before leaving I saw my new movement disorder specialist who gave me the prescription for my now-favorite med, klonopin, and I was feeling better already by the time we got on the plane - and increasingly improved throughout the conference. Although the klonopin much improved the super-painful muscle tension associated with dystonia, and eased the neck spasms quite a bit, I was still pretty symptomatic while I was at the conference with my head constantly leaning to one side or sometimes jerking (this happens especially when I talk). This forced me to interact with a  lot of people despite my obvious symptoms. With each interaction I got a little more brave (it helped that all of the people there either had the same problem or were a close relative or spouse of someone with the problem, so nobody reacted at all to it). In fact, in my bravest moment I even took the mic during the open discussion and made a few points to the whole group of 200+ people  - neck spasms and all. 

I learned a lot about dystonia, how to treat it to ease the symptoms, and how to deal with whatever symptoms remain after treatment. I met a LOT of really nice and caring people, both newly diagnosed and 'old hats' that were making a big effort to connect with people like me. It was a really informative and supportive experience.

But the real step forward came with my own accomplishments (and it helped that my mom was there to point them out to me). Even though the plane ride hurt like hell and my head was tilting weirdly as I walked through the airport and checked into the hotel and I could barely sit through all the talks, I survived. And it wasn't nearly as bad as I thought - I found ways to get through it and still get a lot out of it. I met people who were worse off and also getting through it and I realized even though I couldn't control where my head was all the time I could control a lot of other stuff that made it possible to travel and do all the things I did while I was there.

On the last day, my mom and I went into downtown Charleston SC (where the conference was held) to see the market and have a nice dinner together. We found the most amazing restaurant on the water and got wine and dessert and commended each other on how great we were both doing. It was one of those amazing moments you remember forever and I am so grateful to my mom for talking me into going (several times).



5 comments:

Tony and Lisa said...

Josie, I'm so proud of you! You've had such a difficult time of suffering this year, but you're courageous to seek out treatments and support groups that can help you. I'm praying you will find even more answers. And how cool that your mom chose to go with you - really, really special!! I love you!
Aunt Lisa

J-Funk said...

Thanks Lisa and/or Tony!! You have had a rough ride this year too, and Wendy. Hopefully we'll all be feeling better when we see each other over the holidays.

uncle bruce said...

Hi Josie, I had given up on your blog until Nancy directed me to it. I am completely surprised. I do not know anything about cervical dystopia. Anyway, we love you and will root for you. And, big hugs to Derek and Layla the house painter.

uncle bruce said...

Oh sorry, meant dystonia, not dystopia.

J-Funk said...

Thanks Bruce! We are rooting for you, too.