November 5th, 2018 - updated 10/19 - trying to describe my MAV experience

I wrote this to help my parents & Ron (husband) understand my MAV - Hopefully this info will help someone out there, so I'm shar...

Archive for August 2015

August 25th 2015 Reviewing the situation: Diagnoses, Treatment and more....

NOTE: Please cut and paste into Google Translate to listen if needed.

The last week and weekend were unusually busy and intense for me because I was involved in taking my older daughter to college, and helping her to get settled.  This is a big transition time for me, as well as my family, and I feel like my brain is - as of today - starting to process info better.   I have to be very focused about how I use my time, energy and resources, and I'm still very much in the process of figuring that out.  I made a point of playing my flute - all free form - which felt good, but did no writing.  Making music is a very different experience than formulating coherent thoughts, and I really felt no pull to write.  I knew the writing would come back. 

All of this made me think about life with my invisible disorders.  Living with invisible disorders - certainly the ones I have - is a unique experience, and why I feel so strongly about raising awareness.  People need to know these disorders exist, but also to recognize that understanding them may be difficult, and the key is really to believe people have disorders even when they look "just like everyone else."  I've written about Balance Awareness Week coming up in September, and I've also written before about how vision is an integral part of balance. 

August is Vision and Learning Awareness Month.  There are lots of good articles online, as well as videos explaining why vision is much more than 20/20 acuity. Vision, to quote Dr. Hellerstein again - as seen on FB -  "... is seeing, processing and responding to visual information." If you have a child, getting your child - all the way through college age - tested for functional vision is really important.  The earlier a problem is detected and treated, the better.  Vision problems - like Convergence Insufficiency (basically eye teaming), and Strabismus (double vision) are often misdiagnosed as behavioral problems like ADHD. 

Functional vision tests can be done by a developmental optometrist.  Regular optometrists - and ophthalmologists -  do NOT test for functional problems.  When these vision problems are caught early, the chances of developing a problem later in life - as I did - is greatly reduced.  Again, vision is a key element of balance.  The entire system of balance - vestibular (inner ear), peripheral nervous system and vision - can impact one another, and the vestibulo ocular reflex (VOR) may become impaired if ones balance becomes impaired.  No one should presume it's all in their ears - the vestibular system - if functional vision problems have not been ruled out.

Once you have a diagnosis - whatever it is, along the road to improving as much as possible, take advantage of whatever tools you can that will be helpful.  Ron had a conversation with me recently about a friend from his college days who has trouble with reading since having a stroke, and is resistant to audio books.  While I understand the resistance - I had the same reaction at first - here's my take on using what is available - DO it!  It's hard to acknowledge that you need to use something because of a disability, but consider the consequences if you don't.  You are not taking advantage of having access - whether it's about mobility, or information or whatever - because of your new reality. 

In my mind there are levels of limitations; the situations that I just can't do anything about (like going to an Ed Sheeran concert with my daughters), the situations I can work with (figuring out what I can do for my daughter's college orientation), and what I can do without a great deal of planning (walking the dog with a family member).  Limitations can change over time, depending on what you are doing to make progress, so reviewing your situation, as I did in my post about making improvements (see July 29th "Another I can do it"....), is important.

Regarding working towards improving, there are options beyond medication.  Balance - meaning all the parts that go into a person's system of balance - can often be improved by a therapy that involves brain retraining. Vestibular Rehab Therapy (VRT) is fairly widely known and has helped people, and Feldenkrais Therapy (FT) is less widely known, but very effective. I've also heard of people feeling better from doing yoga and/or tai chi.  When a functional vision problem is involved, Vision Therapy (VT) is very effective.  Diet is also often a key element, particularly if you have a migraine disorder, or Meniere's.  The point is that exploring what can work for you, to help you improve and be more functional, is really important.

Lastly, I've said this before, but it's worth repeating - always give yourself credit for what you are able to do - even if it means simply getting through something difficult.  That's not really a simple thing at all - it's a big deal.  I reminded myself of this this past weekend.  And if you did really well, or better than you were anticipating, hold onto that success.  Something difficult is whatever is hard for YOU - whether that's doing a social event, taking a walk, or doing a household chore.  I feel like it's really easy for those of us with invisible disorders to get down on ourselves, and focus on the frustrations.  It's important to talk to people - therapists, friends who also have invisible disorders - who really get it, get some feedback, and be fair to yourself when you take stock of how you are doing.  None of us is to blame for our limitations due to our disorders, and we need to give ourselves credit for every effort!

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Aug. 14th 2015 Raising awareness for invisible disorders is important....

NOTE: Please cut and paste into Google Translate to listen if needed.

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 -

Here's a link to the BAW page on VEDA....

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Sept. 14th 2015 - Balance Awareness Week is coming in a month!

This is a special post to give a heads up that Balance Awareness Week is coming in a month... I'll be sharing more that week.... please take a look at this, and special thanks to my friend David Morrill for helping with this!

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Aug. 7th 2015 A bit about my game plan towards playing my flute more, and teaching....

NOTE: Please cut and paste into Google Translate to listen if needed

I'm listening to The Brain That Changes Itself: Stories of Personal Triumph from the Frontier's of Brain Science by Norman Doidge, M.D. So far it is proving to be  fascinating, talking about the neuroplasticity of the brain.  Neuroplasticity has to do not just with brain retraining, but also with the brain's ability to have a section of the brain take over the function of a damaged part, thus the term "plasticity."  I'm not trying to make that happen, since I don't - fortunately - have brain damage, but the idea of the capacity of our brains to repair, and in my case, relearn functions is amazing and inspiring.   That's what my Feldenkrais Therapy (FT) and Vision Therapy (VT) are all about - relearning/retraining my brain.

My friend David recently shared my post about getting back to teaching flute, and these were his words of encouragement with his share "...remember do not let your vestibular disorder define who you are! Set goals and work on them slowly."  I would add that I don't want to be defined by my vision disorder either.  I also got a comment from a woman named Melanie, saying that the feedback she'd gotten from a professional flutist and a neuropsychologist were that she couldn't regain the ability to do the mental processing required, so she had to give up the possibility of playing flute again.  Although I don't know what Melanie's diagnosis is, I encouraged her to keep exploring, saying that the feedback she'd gotten might not, in fact, be definitive.

I've seen articles about what music can do for the brain, and I'm convinced that my flute playing helps me.  I'm not saying everyone will become a flutist, but I DO think that making music - and singing definitely counts regardless of how good you are - has all kinds of benefits.  Not just in the brain retraining area, but for mood and cognitive function as well.  As I go through this experience, I find that there are elements of my flute playing that apply to other activities as well.  Computer - which is a nearly universal activity at this point - is one that immediately comes to mind because it uses a combination of visual and fine motor skills.  It is important not to be totally static, and to be mindful on the computer, just like when I play my flute.

I believe SO strongly that, as frustrating as it can be, it's important not to "let your fill-in-the-blank disorder define who you are!" as David said.   You may have to make some adjustments; I saw the other day that a man was playing an autoharp instead of a guitar.  I was told by some, when I had to completely stop playing for about a year and a half, "well, you know you're not alone, some musicians have to give up playing," and yes, I already knew this.  I don't know if the musicians who stop explore all possible avenues, before they give up.  I DO know that I have no plans to give up playing my flute.  Being able to play is, in fact, one of the major motivators for me to do what I need to do to take care of myself and improve as much as possible. 

Everything in our bodies is connected, and I have to be careful about muscle tension in other parts of my body - like my neck or shoulders - impacting my hands, and therefore my ability to play.  I warm up my body with gentle movement before I play, and I stop and take breaks during every session; my playing sessions are currently about 10 minutes.  I pay attention to my breathing, where I place my music stand, and where my music is on the stand.  I notice how I stand, or sit.  Eventually, my new, healthier, more functional habits will become more second nature, and I won't have to think about it all quite so much - that's my plan.  But for now, I play very mindfully.

I watch flutists on YouTube; what are they doing with their arms, torsos, wrists, hands, fingers?  Can I see how they're breathing?  Where are their music stands?  It's interesting to me that some professionals are surprisingly static - probably one of the reasons that musicians end up with troubles.  I listened recently to a demo video of a flutist talking about posture, and noticed that she focused on position as if one's body should be completely still when playing; it was all about head and mouth alignment.  This is not unusual - I never had a flute teacher talk to me about the fluidity of movement involved in playing the flute.  I did not hear about breathing beyond thinking about breathing from my diaphragm.  Good breathing is a start, but what about being aware of how my chest is moving, how I'm holding my arms and whether or not they are moving? How am I sitting, or standing, and how is my weight shifting?

Again, I realize not everyone is going to play the flute - or any instrument - but I mentioned singing, for which this body awareness does matter.  I also mentioned computer use, and breathing and posture matters for that as well.  Another common activity for which all this is important is walking.  Freedom of movement allows for much better balance; this is why it's easier to keep one's balance in motion, than standing still.  Walking is what I think of as a gentle, twisting movement.  It's not just your arms and legs, moving crosswise - meaning left arm going back and forth as right leg goes forward, then right arm doing the same as left leg goes forward.  Your entire torso - shoulders, hips, etc. - are in motion, which of course means your spine is rotating.  When something doesn't move well, problems arise.  So I always think that all my activities impact one another.

I find there's a difference between how I play - and therefore how I feel - if I'm playing "free form" vs. if I'm playing from memory vs. playing off of sheet music I'm reading.  The cognitive processing is somewhat different for each of these modes of playing.  My perceptual field changes when I wear my glasses while playing because, to quote Dr. Hellerstein as seen on FB, "vision is seeing, processing and responding to visual information."  So when I wear my reading glasses, I am mixing the cognitive process of making music, with all that changes when my vision is impacted by glasses.  

When I play my flute,  I try for balance between cognitive attention to music and cognitive attention to my body, AND just letting it happen and not over-thinking the entire process.  Playing free form helps me achieve this balance.  Sometimes when I play free-form I'm surprised when I play a note because I was imagining a different tone than what I produced, and then I go with whatever I actually played.  I have no idea what the "rules" are for improv or jazz because I never learned them in the first place, and am not interested in learning them now.  When I play free form, it's like my fingers just move through notes - the fingerings are in my hands with years of muscle memory. 

I'd already sometimes brought my flute to FT sessions, and I now sometimes bring my glasses and sheet music as well.  Joyce has a music stand (she works out of her house), and so I can replicate what I do at home.  It's fine - probably even good - that the tools are the same as in my own home, but the setting isn't identical.  I do FT movements with my reading glasses on, and move my flute with my eyes closed, both of which are a very different experience for me.   I don't think I'll bring my flute to VT, but I DO bring sheet music (to read on a music stand or similar item) because, again, I want to work with my actual tools.  My brain pays more attention to the differences, I think, being in a different environment - it changes things up more.  It's tiring, but it will get better. 

It would be easy for me to get caught up in frustrations about how things have changed for me.  The reality is that change is a part of life; I had changes I wasn't expecting, but I think that happens more than we admit.  I also took things for granted before, things that I never even thought about.  That's both good and bad - I think being more thoughtful, more aware, and more outspoken about invisible disorders is good.  I've said that my major goal is to get back to teaching flute.  An even larger goal is for some things to become more second nature for me again.  I believe this is happening, and will continue to happen more over time.  I'm very grateful that more is being discovered about the brain; how it works and how to retrain it.  I gain more confidence as I continue my journey, putting more pieces together, to play and teach and share my flute music.

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