It’s been fourteen years since we started our dystonia journey. Fourteen years since the toes began to curl, clutch and claw. Fourteen years since we began to seek answers. Fourteen years without any.
The Mister has been the soul of serious and considered research. We’ve met and talked with doctors and lay persons from this country and others. We’ve put the foot through more tests than it ever wanted and fed it more medicine than it could handle. All to no avail. We had little reason to be optimistic.
We recently met with doctors at Massachusetts General Hospital in Boston. Thoughtful, considered, and smart docs. They were the beginning of a possible solution. The beginning of outside-the-box thinking.
Three weeks ago, we went to Atlanta to meet with the “Dystonia” guru at Emory Medical Center. We’d waited months to see him.
After his Fellow, a young neurologist studying under him, touched, watched and evaluated the foot, the Big Cheese finally came in the room. He sat down and quickly stated the following: “The medical community can’t fix this. Stop going to white coats. They can’t help you. The cure…and I think there is one….is within.”
That sounds harsh but it really isn’t. He’s saying simply that the foot won’t respond to intrusive hypodermics, physical therapy, drugs, hypnosis, or surgery. In fact, the Mister and I had plotted a potential path to wellness on our own. We just hadn’t realized how effective it might be until our recent trips.
The foot’s mother is now low-dosing Ketamine, a psychedelic drug, designed to open closed pathways in the neural system. It is, simply, that simple.
Or so we hope. We are not glib. But there’s reason for hope. We see it every day. Little stumbles are turning into small steps. Those small steps allow a peek into a normal world. And, they may, someday, enable a walk with The Mister.
My fingers…and toes….are crossed.