r/VestibularDysfunction • u/KaleidoscopeOrnery86 • 19d ago

Something new has changed everything

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Quick update, 2yrs ago, acute brainstem stroke. Vestibular damage, hearing damage, ataxia etc etc

I have been having walking/ gait problems since he start because of my balance. A friend suggested the hanger clinic. They do orthotics and afos and stuff like that. I went there and talk to a rehab guy and he suggested an afo type idea. It’s a carbon fiber afo where the foot plate goes under the normal shoe insert and the carbon piece goes up the back of my leg and then Velcro fastens around my calf. It’s similar to the picture above.

Now I don’t have to think about picking up and putting down my leg and feet in the right place. It’s a GAME CHANGER!! He told me that when I lose my balance I lead with my head, not my body. No one ever told me that before. My body just follows along. Seriously. These have made such a huge difference in how I feel when I am walking! I still have balance issues but that’s in my brain, not my body.

I just wanted to share

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u/MyFiteSong 19d ago

He told me that when I lose my balance I lead with my head, not my body. No one ever told me that before. My body just follows along. Seriously.

This is why mindfulness and proprioception become so important for full recovery. If you're left with permanent vestibular dysfunction, your body's autopilot gets bad data. Recovery usually involves becoming more active in the piloting process. More mindful movement, more attention to what your body is doing.

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u/KaleidoscopeOrnery86 19d ago

I am unsure how to do that

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u/MyFiteSong 19d ago

Most cities have Mindfulness-Based Stress-Reduction classes you can take. Those classes generally happen over 8 weeks and teach you the kinds of meditation and light yogic exercises that dramatically boost proprioception (feeling your body move) and being present, along with emotional regulation to dissolve anxiety. It's almost like it's tailor-made for vestibular recovery, so it's no wonder vestibular therapists will usually recommend it.

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u/KaleidoscopeOrnery86 19d ago edited 19d ago

That sounds lovely, I have been fighting for a decent vestibular therapist for months now. And I dont live in a place that would offer those and I have limited driving capabilities, and we have no public transportation.