First, my toes rise, then the balls of my feet as I start falling backward. Then I curl my toes and drive them into the floor while pulling my body forward using my back muscles to right myself. Yes, when I'm standing, this entire process happens probably about ten times per minute. It's exhausting. It overworks my body and gives me pain. It distracts me from everything. It's unnerving to constantly feel myself falling.
I often tip over too. When I lean over, twist my body, reach for something, anything, I keep going in that direction. I very quickly get closer and closer to the ground. The only way I can stop it is to jerk myself in the opposite direction or grab onto something.
I have other symptoms too.
I've never actually fallen and I can do the standard heel-to-toe walk and other in-office balance examinations that my doctors and physical therapist had me do while assessing my Dandy Walker syndrome (cerebellum malformation) symptoms and overall neurological health. So in their eyes, even though they believe what I've told them, I'm fine and I don't require help. Despite describing these symptoms, relaying to them the physical, mental and emotional toll of these symptoms and asking them for help, they have done absolutely nothing for me. No tests. No referrals for any kind of balance therapy or assistive device assessments. Nothing.
It makes me pine for my childhood when my school board, the kids rehab centre and the Hospital for Sick Children screened me for issues, actually observed me in the real world, did detailed assessments, asked questions about my quality of life and did things for me.
Tired of having symptoms, feeling helpless and realizing that I was the only one who could (who would) change things, I recently began coaching myself to always take the only measures that have ever reduced the pain/strain-inducing exertion, and concentration required to keep my balance while standing:
- I hold on to sturdy things like chairs or corners of walls -- whatever I can grip onto that won't fall with me.
- I stand with my feet far apart, stick man style.
- I sway my hips from side to side.
- I march or dance around instead of standing still.
- I walk quickly with my feet turned out
The cane was my idea and I purchased it without having consulted any professional. I couldn't bring myself to. I figured anyone I asked, my PT, neurosurgeon, neurologist, staff of the pharmacy, etc. would scoff at the idea, would think I was imagining things, exaggerating them. I hated the thought of facing even more invalidation. It makes me feel even more isolated. It makes disclosing my issues even more difficult. And it makes me feel I'm making a big deal about nothing.
I know my symptoms are real and I know that I'm struggling, but for some reason I need the support of my medical team to feel comfortable disclosing my challenges. I'm managing my symptoms better because of the initiative I've taken, but it's still not enough. It shouldn't be this hard. I want tools that will help me live more comfortably and actively. But before any of this can happen, medical professionals need to not only recognize that it's a problem, but acknowledge that it's a problem worth helping me with.
Note: I saw a physiotherapist for balance issues initially, but we really only worked on my back and neck issues.
NEW: Since I posted this, I have noticed a perception that these symptoms will pass or become milder again. The symptoms of my Dandy Walker have been worse for a few years now and are likely to be permanent. The Dandy Walker itself is permanent.