Courage for A New Option

I’m in Toronto today, experimenting with a new vertigo treatment, called the Brainport. It’s teaching my tongue to learn where I am in space, to relearn my proprioception. Why am I in Canada? Because the FDA hasn’t approved it for use in the US. And, I suspect that the FDA non-approval has a lot to do with not always picking the right people for the study, and with the fact that the device doesn’t always work.

This device works on the principle of neuroplasticity. And it only works when you have sufficient muscular control. So if you’ve been incapacitated for long enough by your vertigo, even if you have muscular capability, it might not work. I’ve been working out in the gym for over a year, so that’s not a problem. And, it means if you have MS or Parkinson’s, it’s not a solution.

Even though it’s a management option for my vertigo, it’s not a cure. I will still always have vertigo. I will have to practice with the device 20 minutes twice a day for some number of months (I will learn how many tomorrow), and then go to maintenance mode, once a day. But it means I don’t have to take medicine, with the medicine’s significant side effects. I might be able to take escalators again. I might be able to do laundry without getting dizzy. I might be able to turn my head to cross the street without being dizzy. I might be able to make dinner without being dizzy, or any of the other myriad of things I can’t do now without being dizzy—even on the medicine.

When I made the appointment to come here, I was cautiously optimistic. I thought that  maybe I had a shot of some form of normalcy. Now, after my initial appointment, I have both optimism and pessimism.

I’m optimistic that I can have some form of better balance with practice. And, I’m realizing yet again, that my entire life has changed. I will never just get out of bed in the morning and not think of my vertigo. I will still have to plan when to manage my vertigo. I won’t have to plan around my medicine, which is good. I will have to plan around my Brainport practice, which is better.

In some ways, it would be easier to take a pill twice a day. But that passive approach just doesn’t seem like it’s something I can live with. And, even with the medicine, I fell on the way to my appointment. It’s only two blocks from my hotel to the therapist. One light. Yes, I fell at the light. The rough surface that they use for the other handicapped people get me—I trip on the surface if I’m not careful. My ankles don’t adjust quickly enough. That’s the proprioception problem.

I’ve always been a bull-by-the-horns person. The Star Trek theme, “boldly go where no one has gone before” —that’s my theme. 50 years ago this summer, at day camp, I learned how to jump off the diving board. I feel like I’m doing that today. I just wish I could see the pool.

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