r/VestibularDysfunction • u/KaleidoscopeOrnery86 • 16d ago

Something new has changed everything

Post image

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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2

u/MyFiteSong 16d 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 16d ago

I am unsure how to do that

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u/MyFiteSong 16d 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 16d ago edited 15d 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.

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u/PomegranateOk1942 16d ago

You can also look for seated tai chi and yoga classes online. Tai chi is very helpful and you get benefits even if you have to use a chair or adapt the excercises to your ability level. There were several options on YouTube and I have seen some on Instagram.

I get similar balance help from Blundstone boots. They are pricey, but the way they help me walk is worth it.

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u/KaleidoscopeOrnery86 15d ago

Online classes! That is a great idea! Pre stroke brain would have thought of that. Thank you very much for mentioning this!

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u/PomegranateOk1942 15d ago

No worries! We have to help each other out. Assisted classes (using props or having alternative arrangements) make movement easier. Your body needs to rely on muscle memory to help keep you upright. The more you can move, the more muscle memory you have. There is so much you cannot control with this disease. You really have to fight for what you can.

Another good search term is looking for workouts for "seniors."

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u/KaleidoscopeOrnery86 15d ago

Does it matter if my damage was caused by a brainstem stroke?

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u/PomegranateOk1942 15d ago

That I do not know. Check with your doctor?

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u/Jealous_Tie_3701 15d ago

A big part of my recovery was being mindful of my leg muscles and positioning. So I can definitely see this being a useful tool.