As I mentioned in my last update, I spent a good part of Friday very upset that Abbie’s dystonia diagnosis had been delayed so long, with such challenging consequences. But, by Saturday morning I was doing better at focusing on what could be very positive outcomes for Abbie with appropriate treatment.
We went to our normal speech group, made up of a few families who we’ve been with for several years. I was excitedly telling Lisa, Abbie’s speech therapist, about the new diagnosis and the hope that Abbie would gain more movement. She grinned and said, “When Glenn gets here, talk to him about dystonia.”
Glenn is the father of Shari, a little girl about Abbie’s age who is using a touch screen computer to communicate. I’ve watched her blossom over the last year or so, gaining enough motor control to really start using her device. So often, while watching Shari, I’ve thought, “If Abbie could even just move that much!!”
I told Glenn we’d seen Dr. Y the day before and Abbie had been diagnosed with dystonia. He started laughing and said…let me tell you a story…
They took Shari to the Lucille Packard Center at Stanford 3 years ago. A bunch of tests were run, and the specialist said, “She actually has two things going on.” (That sounds familiar!) They did a test which amplified the sounds of Shari’s muscles, and showed Glenn that muscles affected by spasticity sound different than muscles affected by dystonia. There was no doubt Shari had both. They had an answer, but getting treatment was a whole different story.
Once home in Hawaii, they worked for 18 months to get Shari’s neurologist to believe she had dystonia, to do his own research, and to finally be willing to treat her for it. They got started 18 months ago, so it turns out, all the wonderful changes I’ve seen in Shari have been a result of getting her dystonia treated. It just so happens that Shari’s neurologist is Dr. Y — SHE’S the reason he knows about dystonia, picked it up right away in Abbie, and is now willing to jump right into treatment. So…to Glenn, Dayna and Shari…thanks for being our road crew on this one, and paving the way for Abbie!
I am just amazed sometimes at how small our world is, and am now even more excited about what proper treatment could do for Abbie in the long term. She is just so darn smart — she learned “left” and “right” in her speech session on Saturday. Her silly mom has been telling her to pull the switch “to the middle” and “to the outside”. The wonderful student-therapist thought “right” and “left” would be more appropriate and useful, so she made up flashcards and cued Abbie with movement and toys. She picked it right up. So, if we can get that intellect paired with a more cooperative body…watch out world!! Abbie is going to have a lot to say!