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With Balance Awareness Week coming up the week of September
14th, I got to thinking about why BAW matters.
I was thinking back to how much I've learned about mental illness, and
other invisible disorders. People tend
to learn about health issues once it becomes personal, and it's safe to say
that I've been on quite a learning curve over the last eight years. I say eight years, because when my husband Ron
had to change medication for his Bipolar Disorder, that's really when my
education began. Then I was diagnosed
early in 2011 with Bilateral Carpal Tunnel Syndrome (for which I had surgery), and
got sick in Sept. 2011. Ultimately, I
was diagnosed with Migraine Associated Vertigo (MAV) in July of 2012, and
finally Convergence Insufficiency (CI) with an impaired vestibulo occular
reflex (VOR) in April of 2013.
I've learned that it's hard for people to believe
disorders exist that cannot be seen, but people with invisible disorders need
to have a voice - the disorders may be invisible, but the people who have them are
not, and the impact that these disorders has on their lives needs to be
believed. I also know that people with
invisible disorders need to feel they are not alone, and those of us who are
able to speak out can let them know they are not, and can offer much needed
support.
Those who haven't actually experienced invisible
disorders, such as dizziness, disequilibrium and functional vision problems,
have a hard time understanding how it impacts daily life. Even when people understand the basic
symptoms, perhaps have even had a temporary episode of dizziness, understanding
how the symptoms impact ordinary activities of daily life is difficult. Aside from the fact that many people don't
look ill (unless they're having a really bad day), there's often an individual
twist - because each of us is different -
in how vestibular and vision disorders are experienced. One person is
more affected by weather, another by food, another by stress or lack of
sleep. It can depend on how long an
individual has been ill, and what if any treatment they are utilizing.
All of this is why I feel so strongly about raising
awareness. Thanks to the internet, people
like myself are able to raise awareness.
I'm able to share my blog with people all over the world, which is
amazing and wonderful. I've learned so
much. I've learned that my vision
disorders are common among children, but still not commonly enough diagnosed,
which means that too many adults are at risk of something happening that
triggers a problem. And far too few
doctors know about Vision Therapy, which is done by either Developmental or
Behavioral Optometrists (a specialty in the field of optometry). I was told about this kind of specialist and
treatment by my Feldenkrais Therapist (FT - see below), NOT by a doctor. People who develop a vision problem due to Traumatic
Brain Injury (TBI), or suffering a stroke which also often results in vision
troubles won't get the referral they need.
I've learned that there are many disorders that cause
vertigo, and disequilibrium... these words are catch all terms that refer to
truly miserable sensations that millions suffer from. There is still not enough known about these
disorders - Meniere's Disease (MD), MAV, Benign Paroxysmal Positional Vertigo (BPPV)
just to name a few - and far too many people go undiagnosed. There are numerous reasons for this - among
them problems in the medical system which I'm not going to discuss here - it's
too complex for this space! I will say
that dizziness is a symptom caused by many different disorders, which makes
accurate diagnosis difficult.
I'm fortunate that I was able to get the correct
diagnoses. My former internist did refer
me to a neurologist, but though he was nice, he was NOT competent, and it took
multiple doctors and appointments to get answers. Once I got my MAV diagnosis, I ended up getting
the treatment that worked for me - Feldenkrais Therapy - because of a friend,
NOT a doctor. And although it took much
longer than I would have liked, I know there are people who wait much longer,
and many who are still waiting. I know
some people basically give up on finding a doctor who can give them an answer. But because vertigo and disequilibrium are
so disabling to so many, it is vital that people ARE able to get diagnoses -
diagnoses lead to possible treatments.
Even when treatment is sparse, too expensive or simply unavailable,
knowing what's wrong allows people to develop ways to manage their disorders.
Sharing info online is really important. VEDA (Vestibular Disorders Association) posts
informative pieces, as well as posts of encouragement on their FB page, and
their followers comment and share their own stories. There are also a number of online support
groups to choose from, whether you're looking for people who share you
particular disorder, or one that's more comprehensive; for example, I see posts
from VEDA, DIY Vision Therapy (for those with vision disorders) and Dizzy Daze
(which is for people with vestibular disorders). People in these groups post and share a
variety of items, such as good news, and fun posts; I like to share music, or
just items I think others will enjoy. But
I definitely try to share posts on my personal FB page that are informative, so
I can raise awareness among those I'm friends with on FB... social media can be
powerful - in a good way!
Here's a link to my Personal Campaign Pge for BAW - https://vestibular.org/civicrm/pcp/info?reset=1&id=156
Here's a link to the BAW page on VEDA.... https://vestibular.org/BAW
Here's a link to my Personal Campaign Pge for BAW - https://vestibular.org/civicrm/pcp/info?reset=1&id=156
Here's a link to the BAW page on VEDA.... https://vestibular.org/BAW
