I shared it with my family. I shared it with my wife, my mother and my brother of course, and they were grateful that it wasn’t something that was going to kill me, you know, in a couple years or so and it was just something that I just had to learn to live with and that itself was a process and it’s going to continue being that way as things progress.
They had no understanding of what dystonia was. I had to do more research on my own just so I could learn everything I could about it that way I could teach them what it was that I was experiencing. Even to this day they don’t completely understand the symptoms that I have, and the biggest one that they’re having trouble with I think is the neuropathy that’s associated with my dystonia because you can see when I’m having trouble writing; you can see when I’m having trouble holding a little doll with my daughters; but they can’t see the pain that I feel just about every day of my life now.
My daughters like Minecraft. They like Legos, all of these things, everything that they like to do involves holding and grasping tiny little figurines and um yeah it’s a little for me to do so just because of the dystonia. I tried doing things with my left hand but the dystonia has found its way over to my left hand as well, so, I do what I can.
What do I want my kids to get away from this or take from this? Just not to give up. I don’t want my kids to give up because of something that gets in their way. You can always adapt to what’s being thrown at you and you can’t be you unless you own you, once I decided to own my disease, again, things changed. My attitude changed, and I became a much happier person once I started doing that.
I am a rare dad and I have a rare condition and I want to tell my daughters don’t ever give up even if something gets in your way it is just part of your path.
Patiently Proud, a Marathon with Dystonia
Nolan Discusses Dystonia Treatment
