September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

October 11th 2016 Choices re challenges - like a conversation while standing...

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

Comments on blog site - Please re-visit the post for my reply.

I attended a morning Rosh Hashanah (High Holidays) service for my congregation.  My husband Ron and I shared a reading, of which he read the majority; I read the first three lines.  I had printed out the text, re-formatted, so I didn't need to deal with my reading glasses.  After the service, we joined our friends for the Oneg - the food/social part of the event.  I engaged in conversation with a friend, while standing.  Then I moved on and had a conversation with two other friends, a third joining in at some point. 

This was a BIG challenge for me.  Balancing while standing, rather than sitting down, is more work.  Add in processing conversations while being aware of other sounds in the room, making some eye contact - this is multi-tasking!  I wanted to sit down, but this would have meant excusing myself, and excluding myself from a few minutes to connect IN PERSON with friends I rarely see.  So, I stayed put, but I was working hard, and could feel myself getting hot with the exertion of the work.  I occasionally looked around for a chair, as if one would magically materialize right next to me.  When Ron eventually walked over, I told him I needed to go.

I knew we were going to a cousin's house for dinner later.  Doing TWO things in one day is always a challenge, but two BIG things?!  What was I thinking?  I tried to keep things low key, and did rest in between, but going out again was hard.  There was another car ride - a longer one in the afternoon - and more people.  I limited my standing as much as possible, which meant spending some of the time either alone, or simply not engaged in conversation with anyone.  I was tired.  I had already agreed with Ron, and my daughter Cara who was able to come along, what time we'd leave.  After a day of sensory overload, it always takes me some time to unwind, and get to sleep. 

When special events present themselves, I have to make choices.  I spend a fair amount of time by myself - yes, I live with my husband, but he goes places without me (which I expect him to) - and I didn't want to miss out on the holiday.  But making choices is never easy - I often have to sit with the question of  "what do I do?" for a little while, before I make my decision.  I never go to evening High Holiday services anymore.  Evenings are more difficult, and there's no way I can attend both the evening AND morning, so I only attend in the morning. 

I ask myself, once I've gotten through a challenging day (or event), if I'd make the same choices again.  My answer varies.  Knowing when to push myself, and when to say "I'm going to have to miss out," isn't always obvious.  I do my best to make sure that after anything really demanding, the following day is low key.  Even without special events or outings, planning and scheduling are a constant issue for me.  I've gained a pretty good understanding of my disorders.  I know that some seemingly ordinary things - like a conversation while standing -  are a big deal for me.  Even so, it's impossible to always anticipate EVERYTHING.  It's also not always possible to know all the details of what will be involved.  So I try to make good choices, and looking back, focus on whatever element of what I did that was successful.

Clarification:

As I said in this post, I already had 1) processed the service, 2) done my reading and 3) was dealing with a fair amount of noise in the social hall.  I also had not had much of a break in between the service, and the socializing.  All of that mattered. 


BUT, I want to be sure people understand that literally standing still is difficult, because it is static.  When I go for daily walks with Ron and our dog, he and I often talk.  Although this is challenging, movement is better.  When upright, I always prefer movement to standing still.


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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!!

"Goal 
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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