by Ashlynn Hopkins
We know that over the years media goes through phases of placing public attention on different health issues and epidemics, such as cancer and cerebral palsy. But this effort to assist those with serious disorders is uneven.
There are communities, though, of strong and fighting people who lean on like individuals for support, such as my community for those of us with Paroxysmal Kinesigenic Dyskinesia (PKD) or the Non-Kinesigenic form (PNKD). Yes, I am one of them, with PKD.
The PKD strand is slightly different than the PNKD.
PKD, the disorder that I have, and PNKD are neuro-muscular disorders, causing uncontrollable twitching and jerking movements. They are caused by movement or environmental triggers. In my case, the PKD is differentiated from the PKND by having more “trigger” type episodes. Some things as simple as coffee, a bump or fall, or even noises can cause an episode. Also, it is often accompanied by Dystonia, which is another movement disorder with more radical movements, like twisting and body wrenching. Not one case is the same though, as with many other disorders.
Daily tasks, like cooking or carrying things that could spill or fall, are a huge issue. The number of my “episodes” are uncountable in my opinion, but I estimate them to be around 100-120 movements a day average.
Some days are more intense than others. Throw in some coffee and stress and you have a recipe for disaster.
There are still a lot of unknowns on what causes these disorders, whether it is hereditary – and if not, where does it come from? My sister has it, but in my whole family we are the only ones who do.
It is treatable but so far not curable. Common medications used to treat it are Tegratol and Dilanten. Currently I am on Trileptol, but I was on Tegratol for many years. It often takes a period of trial and error for people with these disorders to find a medication that works; there’s no specific medication for the masses, but most of those prescribed are seizure medications.
I was diagnosed about the age of four, but some people may not even develop symptoms until their teenage years, especially with PNKD. There is a group dedicated on Facebook to Paroxysmal Dyskinesia. They are a friendly, totally supportive and active group. Many of us find our help through what other people are testing out and experiencing. They are also very accepting of the cards that have been dealt to them, as I am, and take it with a spoon full of humor.
© 2013 Ashlynn Hopkins
Editor’s Note: The Mountain News proudly welcomes Ashlynn to these pages. She is a former intern of mine when I was writing at The Dispatch in Eatonville and she was a student at Graham-Kapowsin High School. Clearly, she is stepping up and stepping out.
Ashlynn also promises that this piece is just the first in a series. I trust she will bring her insistent voice to the issues of the young people of our community, and in particular to her home of Graham.