Monday, January 30, 2012

Balance Problems

I lose my balance hundreds of times per day while I stand.

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
I have a walking cane, but I seldom use it. It helps my balance problems, but not as well as the above measures. Plus, it's annoying to walk with; it slows me down and I'm really self conscious of it. Also, the severity of my symptoms varies and it's awkward to take the cane out of my bag, unfold it and walk with it when my symptoms worsen, or put it away after they improve.

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.

8 comments :

  1. Hi Ashley.

    Western medicine is designed to work with acute and urgent conditions. They are out to sea when it comes to situations such as your own.

    Have you ever considered alternative medicine? "Alternative" - what a weird term. Chinese medicine, homeopathy, osteopathy - all these discplines can be effective from chronic situations.

    I avoid western doctors whenever possible, though I'm glad they're there in case there is ever an emergency.

    Sending you good energy. Hope you're soon on the mend!

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  2. I had something wrong with me and I had no idea what it was. I hope you continue to care for yourself and treat the symptoms. Hopefully it will sort itself out.

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  3. Reya - Yes, the medical model is mostly focused on treating and curing, but there are plenty of good western doctors who are willing to take it further. And certainly western medicine has the capacity to do that. It has great capacity to diagnose, too. Western medicine is the reason my conditions were discovered and treated.

    This isn't going to "mend" as the condition will never go away. There is no reason to believe the symptoms will improve.

    The Tsaritsa - What was the problem? I'll always be symptomatic because my condition is permanent, but I hope I learn how to manage it better. Thanks.

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  4. Hope you're feeling better now-
    To answer your question about my returning to work- it was more for financial issues really. I was getting published (I made a story sale in the United Kingdom just before I went back to work) but yes you're right- it takes infinite amounts of confidence and perserverance in this business.

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  5. I hope you get the help you need. I've had lots of problems with doctors dismissing me in the past. I've had to learn to listen to my own body and manage my hypothyroidism on my own with virtually no medical assistance. Like Reya, I'd suggest venturing into "alternative" medicine if you're not getting the support you need through the official channels. Whatever works, right?

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  6. Eeleen - Thanks, but it's chronic and permanent.

    Lauren - Thanks. I need to be proactive. The support is possible from conventional therapies; I just haven't found health care providers willing to give it to me, or perhaps not aware of it.

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  7. Wishing you the best. It's very difficult to represent yourself, get proper care in the health system when you're unhealthy. It's also frustrating to have no help. Don't give up!

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  8. I really don't know much about Canadian doctors, but we have that exact problem here!! I have no faith in doctors anymore. They completely dismiss anything they don't have concrete proof of. It's like they don't even trust us to tell the truth about our symptoms or something. Hello we take care of ourselves every day of every month of every year. We only see you stupid doctors for an hour or two and you think you know what's wrong with us (or that there is nothing wrong with us) without even asking us??

    Sorry for the rant. Sensitive subject I guess. My husband was dismissed because his nerve damage in his back didn't show up on the MRI so they couldn't do surgery, which resulted in job loss. Grr. Doctors totally piss me off lol.

    Anyway it sounds like your ideas are good ones and should help. :) Keep being your own advocate!

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