July 4, 2019 Enjoyed my morning, ready to keep moving

I enjoyed walking around, looking at booths for our Annual Deerfield Family Days with Ron & both my daughters :-) I handled the ...

Archive for September 2016

September 12th 2016 It's Balance Awareness Week!

Below is a link to my Balance Awareness Week Campaign Page brought to you by the Vestibular Disorders Association - VEDA - www.vestibular.org

Their Mission - to inform, support and advocate for the vestibular community...

Led by Executive Director Cynthia Ryan, VEDA is doing the above in a variety of ways, not the least of which is listening to input from the Ambassadors Board - the patient advisory board - of which I am a member. David M. Morrill is our wonderful Chairperson. 

Please support this worthwhile organization.  If you can't chip in, help spread the word and raise awareness - follow VEDA on Facebook, and share their posts!  E-mail this to friends and family... every little bit helps - Thank You!

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September 10th 2016 Nearly 900 and counting!

To listen: copy and paste into Google Translate, click the "speaker" icon.

That number refers to signatures collected for the WHO petition Vestibular patients for 'smarter doctors' and 'better patient care'.  If you haven't seen it yet, check the link at the bottom of this post, click to sign and then share it!  First read (or listen :-) ) to this, because I want to tell you why this petition is so important. 

Despite the limitations I have, in a way, I'm one of the lucky ones.  I "only" had to wait not quite two years for my complete diagnoses.  I found the correct treatment, and am able to manage my disorders.  But I know that there are literally millions of people out there who DON'T have their diagnoses yet.  They don't know what's wrong with them, which can be terrifying, and makes it very difficult to know what to do.

We need more medical professionals with proper training in vestibular disorders.  Vertigo and dizziness are symptoms of disorders that can be very difficult to diagnose, but not impossible.  Accurate diagnosis is possible when the professional understands the basics of ALL the components involved - inner ear, proprioceptors, brain and eyes - and can (and will) make referrals when it is warranted.

An ENT needs to know that there is more to balance than the inner ear.  An optometrist or ophthalmologist needs to know that balance problems can result when there are functional, neurological vision problems (it's NOT just about acuity and disease).  Brain injury from concussion can result in treatable balance problems.  ER doctors need to know what to look for when someone comes in with a severe case of vertigo, a common reason for visits to the ER.  The list goes on.

The key is early, proper detection with appropriate follow up care.  The sensory system of balance is not something to be ignored.  The common diagnosis of BPPV occasionally goes away on its' own, but frequently does not, and requires proper treatment.  And doctors need to know what to look for, because there often is something else going on other than BPPV.  Accurate, quick diagnosis matters, because balance matters.  Problems that people report are real, and medical professionals need to know what to look for, and what to recommend.

So as Balance Awareness Week approaches, and you want to be a part of working for positive change, please look at the petition.   Whether you have a balance disorder, or someone you care about does.  Sign it - just click the link, and click to sign! Then  share it - e-mail it, post it on whatever social media you use.  Each and every signature counts, so help us spread the word, and thank you for your support!

UPDATE: we're over 900 signatures!! Thank you - keep them coming in!!

We aim to give vestibular / neurovestibular patients a better chance for swift and accurate diagnosis, a cure or appropriate treatment. We ask for a worldwide agreement on education of medical students, further training for existing specialists and the establishment of medical guidelines regarding vestibular conditions / disorders." 

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September 7th 2016 Diagnoses & Info = better understanding & management....

To listen: copy and paste into Google Translate, click the "speaker" icon.

Have you heard the word "vestibular"? Do you know how you keep your balance?  Do you ever get dizzy for no obvious reason?  OK, for that last question, you might think, "well, if I spin around, I get dizzy."  True enough, but I mean if you get dizzy when you are literally standing still.  Or if you feel like the world is moving around you when you know that it is in fact, NOT doing anything.  And neither are you.

Before I got sick, I didn't think much about any of that.  Like most people, I took my balance for granted.  I always had trouble with motion sickness, and discovered I couldn't watch 3D movies, but I figured a lot of people were like that.  I've learned a great deal since getting sick, through a variety of sources.  My OT, Joyce, who is a Feldenkrais Practitioner.  My Vision Therapist, Ann, who is supervised by Dr. Neil Margolis, Developmental Optometrist.  The Vestibular Disorders Association, VEDA, which has a very comprehensive website that includes a page about Migraine Associated Vertigo (MAV).  Consulting with a Registered Dietician about my Migraine Diet.  Support groups on Facebook. 

I now know there are four basic components to the entire system of balance and they all need to work together.  You have your eyes, your inner ear, proprioceptors (part of your nervous system), and of course your brain.  Your brain is constantly processing all kinds of information, but there's one part of your brain (the cerebellum) that does the majority of the work when it comes to balance. 

For info on proprioception done by proprioceptors, which has to do with movement in space, here's a link to the Wikipedia page:

How your eyes work in regard to balance is complicated.  One piece of this is the vestibulo ocular reflex, or VOR.  Everyone has a VOR, and it has to do with image stabilization.  Your VOR is what helps you know when you are not moving, when other things are, and helps you feel stable even when you are moving.  Very important stuff.  Here's a link to a piece I wrote about the VOR, which has info from Wikipedia:

I have problems with my VOR, which I believe is at least partly because since I have trouble with eye teaming - Convergence Insufficiency (my diagnosis) - the messages my brain gets are confused.  Image stabilization (the function of the VOR) is difficult when messages get mixed up.   I also have trouble, and work in vision therapy on eye gaze switching.  Again, when eye teaming is an issue, switching from one thing to another gets to be a lot of work, and coordinated vision is far better than disorganized vision.

I've known for quite a while now that watching movies with special effects, or animation is difficult for me.  I believe this is because part of how your brain figures out visual input is through a degree of logic already in your "database."  But special effects and animation don't follow those rules.  That's really the point of using those two elements in movies - the filmmaker can do things that aren't normal.   But normal is what my brain wants.

Some people with vestibular disorders have hearing loss.  I have the opposite problem.  I have very acute, sensitive hearing, which means that loud noises are very difficult for me.  I have a very low tolerance now for thunder, or sirens, or loud music.  Despite my love of music, there's some more tonal types I can't listen to.  If I enter a room with a lot of people, it takes me a while to get acclimated, and too much noise can just overwhelm me.  Also due to MAV, I'm very sensitive to light.  I no longer watch fireworks, and avoid lightning if I possibly can.

I don't understand my disorders as much as the medical professionals I work with, but I've tried to gain some understanding.  As I move through my day, when I have a problem, my management is better because of what I know.  Better management means less anxiety.  It's very freaky to feel off balance (disequilibrium) or dizzy.  Knowing WHY helps me.  I can't always do something to make the situation better, but sometimes I can.  It might be something as simple as sitting down to do something, rather than standing.  Even if I can't do something, being able to say to myself "OK, that just happened because of xyz, rather than 'woah, WHAT is going ON?!" is clearly better. 

If you don't know what's wrong with you, don't give up on trying to find out!  Living with these invisible disorders isn't easy, but knowing what's going on, and doing my best to get a handle on management makes a difference.


September 4th 2016 Change.org Petition for WHO...

Today's post is very special to me.  I've had the privilege of working with a terrific group of dedicated people via Facebook on this petition - I'm very proud to be a part of this.  Look at the end of the petition to learn about each of us!

The Goal section of the petition explains our purpose:
We aim to give vestibular / neurovestibular patients a better chance for swift and accurate diagnosis, a cure or appropriate treatment. We ask for a worldwide agreement on education of medical students, further training for existing specialists and the establishment of medical guidelines regarding vestibular conditions / disorders."

A big Thank You to my friend David for e-mailing stuff to me so I could listen to it!  Now we need signatures...please, please share this - email it, share it on whatever social media you use.  We really want to spread the word!! Thank you!

Remember you can copy and paste into Google Translate to listen by clicking on the "speaker" icon, just like I did.

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September 2nd 2016 Joint Article with VEDA Ambassador Chair....

To listen: copy and paste into Google Translate, click "speaker" icon.

I'm on the Ambassador Board - the Patient Advisory Board - for VEDA, and my friend David is the Chair of this Board. 

We decided to do a joint article to share our stories... here's a link to the article on the VEDA website... please take a look, and share!

If you're not following me on Facebook, please consider "Liking" my Visible Person, Invisible Problem Page so you can get my posts in your newsfeed - thank you!

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September 2nd 2016 Balance Awareness Week is coming!

To listen: copy and paste into Google Translate, click "speaker" icon.

Balance Awareness Week is September 12th.  For those of you who already follow me on Facebook - Thank you!

If you don't, please consider "Liking" my Facebook page - Visible Person, Invisible Problem - I'll be posting info from the Vestibular Disorders Association - www.vestibular.org. 

I'll also try to share info about how vision impacts balance - I always say balance is more than your inner ear!

Here's a link to my Balance Awareness Week Campaign page - please take a look, and if you can't donate, share, share share - spreading the word is SO important!

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