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Real, lasting neurological change (a brooaad category - I mean, we're talking about your brain, nervous systems) is really hard ...

Archive for June 2015

June 30th 2015 Feldenkrais & Vision Therapies, & the people I work with....

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

Feldenkrais and Vision Therapies - my rehab - are a big part of my life.  I've said that before, but it's worth repeating, because I want people to understand that FT and VT are so integral to my life.  Based on the feedback I've gotten, people seem to be interested and curious about my therapies.  So here's a bit more of my experience, and a little about the people I work with.

My Feldenkrais Practitioner, Joyce, is a Guild Certified Feldenkrais  Practitioner® (GCFP), who trained with Anat Baniel, a Registered and Licensed Occupational Therapist.  I've never met Anat, but I know that Joyce has regular contact with her. As I've said before, Feldenkrais therapy was invented by a man named Feldenkrais.  There is an institute in New York - this is a link to their site - http://feldenkraisinstitute.com/, and other info online for those who want to learn more. 

For my vision therapy, I work with Ann, who is a Certified Vision Therapist.  She is supervised by Dr. Neil Margolis, a Developmental Optometrist.  Here's some of a basic explanation from Answer.com about Developmental Optometrists, who are considered specialists in the field of eye care:

"... emphasizes proper visual development of their patients. Skills that can be underdeveloped include eye focusing skills, tracking skills, and binocularity. Conditions such as amblyopia, or lazy eye, convergence insufficiency, and eye focusing troubles can be addressed with vision therapy....These optometrists will usually join  - and can do additional training and education through - an organization known as the College of Optometrist in Vision Development, or COVD. An optometrist who does extra research, publishes case studies, and passes rigorous testing can become a fellow of the COVD. Hence the title of FCOVD is derived from this process...."

Dr. Margolis is a fellow of the COVD, and does continuing education for himself, as well as speaking in various forums to provide info about eye health and VT.  There are others in this specialized field who spend time doing this; doing VT is a specialty that people need to know about because it can have such dramatic consequences for children, as well as adults.  I wrote in "More of my story..." about what I believe happened to me, but there are also adults (and children) who suffer Traumatic Brain Injury from events like strokes, concussions, etc. who benefit from VT.  What Dr. M. does is in addition to his actual practice - I'm fortunate that he is so dedicated to his work and his patients!  I see Dr. Margolis for Progress Report consultations, which give me a chance to communicate directly with him, and he also communicates regularly with Ann.

I've also said this before, but it's worth repeating - rehab is hard work.  I have to put in effort, and so do the people who work with me.  I also have to do homework in the form of exercises I do at home.  It was a very positive step for me when I was able to handle doing these exercises; for about the first year and a half of VT, homework was very difficult for me.  I am also able to do more FT at home.  People who are familiar with the term "vestibular rehab therapy (VRT)" tend to think of exercises done with a PT.  For me, FT and VT are my vestibular rehab therapy, but include additional components.  Because I do two different, but complementary therapies, I think my therapy is more comprehensive. 

I also think doing VT and FT is very different than recovering from surgery.  I've had to recover from surgery, and although it's also hard work, the rehab I am doing now has a very different feel to it.  I believe that therapy that retrains your brain, which is what I'm doing, is a different experience than getting a joint moving again, or working through scar tissue, both of which I've had to do. 

My therapies both work for me in small steps.  An example of this that everyone is familiar with is reading.  I am relearning how to do this, and probably learning better than when I was a child.  It's an unusual experience to learn to track properly, and actually process the words.  There are steps that for now are conscious, that eventually will not be.  The same is true for reading sheet music again, or walking in new environments.  If I go someplace new, one that my body doesn't know, it feels different on a sensory, vestibular, visual level than being someplace familiar.  All of me has to work harder.  So I take very small steps, and each step builds on itself. 

Sometimes I don't feel good after doing something.  I might feel tired, dizzy or off-balance, somewhat drained, or some combination of these.  But I want to push through, because I know that my tolerance for doing things will not increase unless I push through.  The tricky part is that if I go too far, and end up on overload, that doesn't help me.  So I'm always planning, trying to gage my pace, figuring out about putting my puzzle pieces together.  This is, I believe, one of the hardest things about rehab - figuring that out.  It's also one of the reasons that I think Dr. M., Ann and Joyce are so good - because they work with me so well, and listen so well to keep on putting the pieces together.  This mental processing of and about rehab is one of the reasons I get tired, sometimes drained.  And one of my goals -  one that Dr. M., Ann, and Joyce share with me - is that over time I DON'T have to think about things as much.  I won't have to plan as much.  I do see improvement - that I sometimes can move from one activity to another without quite so much forethought.

Though much of FT and VT are about small increments, I do sometimes take on bigger challenges.  I thought a lot about whether or not to go to Ravinia Festival this year with my family.  It's a very challenging venue for me; lots of sound and people and movement.  But I went last year and I decided that if I didn't go this summer because I didn't want to deal with all the challenges, I was giving in to my disorders.  And not giving myself a chance to see if it's any easier, or at least no more difficult than last year.  So we are going to go, and I think about what I can do to prepare.  Doing other activities, going to other events - like attending my congregation's Mitzvah Brunch - helps me.  It's easier to do something really big if I've exposed myself to situations with more stimulation, movement, visual challenges, etc.

VT and FT are about therapeutic exercises AND daily activities, many of which incorporate FT and VT.   I do specific FT or VT exercises that work on a particular element, push me, make my systems work, retrain my brain - my circuitry if you will - in a way that daily activities do not.  I can feel the difference between what I'm basically used to, vs. what challenges me.   That said, based on what I've learned, and conversations I've had with Dr. M., Ann, and Joyce, there are also things I can do on my own that function as exercises as well.  Many things throughout my day involve my vision, my vestibular system, my whole sensory system, so in some ways my life is therapy for me.  For example, paying attention to how I move, breathe, switch my eye gaze, use my glasses (both reading and sunglasses) - these are all pieces I can build into my day.

I'm not trying to do rehab eight hours a day, but it is at least a part time job for me, and affects many, many activities.  I think this is because balance is truly such a fundamental part of who we are, but one we don't think about unless we have a problem.  Sometimes I wish that I didn't have to do so much therapy, and that the process of brain re-training was faster.  But most of the time I don't dwell on that.  I'm very grateful to live in a time when there is so much known about this kind of rehab.  And I've become an expert at being patient.  I've accepted that therapy is hard work, but work that I have to do. 

Having my invisible disorders, and doing my rehab, I've also learned some more general coping skills.  Although I'm still independent in thought - and probably more outspoken than I used to be - I don't have the mobile independence I once did, but this doesn't bother me the way it once did.  I've gotten used to planning my transportation needs, and I'm better at asking for help, and letting my needs be known, while still trying to be somewhat flexible.  I'm constantly learning not to sweat the small stuff.  I do my best to say "OK, let it go, this isn't worth stressing over." I try hard to stay more present-focused, taking one day, one step at a time.  I also try not to focus on what others can or can't do, but rather on what *I* can do  to make progress.



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June 21st 2015 A little bit about Feldenkrais and Vision therapy

Use Google Translate to listen if needed.

NOTE/CLARIFICATION:  I said in my previous post that my first diagnosis was BPPV.   The BPPV test that a vestibular rehab therapist (VRT) does with goggles is NOT the same as what a Developmental (or Behavioral) Optometrist (DO) does to check for functional vision problems (such as CI, Strabismus, etc.).  The BPPV test does NOT show functional problems.  My experience has been that DOs, who supervise VT (and the vision therapists that DO VT) have far more experience and expertise regarding the wide spectrum of functional vision problems than a VRT does.  Finally, you can have a functional disorder WITHOUT having nerve damage.

Some people have never heard of Feldenkrais Therapy (FT), named for the man who invented it, or Vision Therapy (VT).   Or they've heard of them, but only by name.  Both of these therapies are appropriate for my diagnoses, and work well for me.  FT works far better for me than vestibular rehab therapy did.  I know that a number of factors can impact what choices you make (i.e. money, insurance coverage, etc), but hopefully sharing this info will be helpful for some.  I also encourage you to Google videos and articles - there's some good TED talks, etc. out there.  One difference between FT and VT is that FT is what I think of as a combo therapy.  Sometimes when I go, because of whatever has been going on, I'm more focused on getting back to my baseline.  Other times, I can be challenged more to make progress. 

So, with all of that stated, a little bit about VT.   I saw a good TED talk recently in which the doctor talked about eyes working as a team.  That is the basic goal: for my eyes to learn or relearn how to work together.   For example, how my vision is involved in helping me keep my balance, because my balance comes from more than my inner ear.  I use, among other things, various games, computer software programs, and orthoptic tools - some that look ordinary and some not - to work on these tasks.  Sometimes I sit and sometimes I stand, or even move around a bit.   I always give Ann an update before we begin, and there's a fair amount of discussion with Ann throughout the process.  Sometimes this is to answer my questions, and sometimes I talk about other things so I don't get too fixated on the visual task.  Sometimes concentrating is good, sometimes it's over thinking, at least for me, which isn't helpful.

Now for FT.   FT involves movement and body awareness, sometimes done by Joyce, sometimes by me under her guidance.  I am in the process of relearning/retraining my body/brain how to do things with better balance.  I think that all the movements send new, good messages to my brain, and my brain absorbs it over time, and with repetition. Joyce works with me on a low, slightly padded table.  I either sit, or lie down, and sometimes at the end of a session I walk around a bit.  Just as with Ann, I give Joyce an update before we begin.  I talk about how to do things, how to be functional.  Joyce often reminds me of how everything in my body is connected.   She looks for basic things like how well I'm aligned, how I move - or don't move.  During the session, I tell her how something feels, or ask a question, but there is less general conversation during my sessions with Joyce.  At the end of a session, she usually asks me if anything feels different, where my visual resting point is, and about my visual horizon. 


My MAV and CI caused, and can still cause, similar symptoms: dizziness and disequilibrium (being off balance).  When I got sick, I developed - as do many people - coping and compensating mechanisms.  I listened to an article my friend Michael sent me regarding how other muscles get in on the act when eye muscles aren't doing their job.  This is true; if one part of your body (eye muscles) isn't doing its' job, your brain/body will involve something else.  This is what compensating is all about.  Unfortunately, the compensating isn't always good in the long run.  Regarding vision, and therefore balance, this means that muscles work too hard, and often get very tense and tight.  This tension goes in both directions because everything is connected:  when my eye muscles don't work properly, it can create tension in my jaw (which causes pain), OR muscles that tense up in my shoulder or neck can cause tension in my eye muscles.   

Some of my compensating habits were obvious and conscious - like how I sat when I first got sick - but a lot of it happened on a neuromuscular level.  There is work that Joyce does with me during my FT sessions that works on that level which I really can't explain.   But I do know that I don't want to make things any harder, so muscle tension matters.  I want everything serving its' intended purpose. The key for muscles is to be holding, functioning, but not over-working and tight.  Muscle tension affects my posture while I'm looking at the computer, which makes visual tasks more difficult.  Also, if my posture while standing isn't good due to tension, this affects my ability to comfortably maintain my balance, and affects my line of vision.    In addition to posture, muscle tension is, I think, a trigger for migraines; one reason my migraines are better controlled, besides my diet, is because of my FT. 

Breathing is important for oxygen, obviously, and greatly affects muscle tension, and thus balance.   Joyce talks to me a lot about, and works with me on breathing, and Ann will sometimes remind me to breathe.  I'm less likely to feel dizzy and/or off-balance when I'm reasonably comfortable, and breathing well.  When I am concentrating on doing something, I may tense up, and not breathe well.  I don't always notice muscle tension before I feel really tight, even pain, but I'm getting better at this.  When I feel/notice pain, I do three things: 

1) Body check - what do I notice?  Is there anything I want to change?,

2) Breathing - how am I breathing?  Do I suddenly take a huge breath when I 
pay attention?

3) Do I need to get up and move around?

One more thing regarding muscle tension/pain:  I have learned through FT that sometimes movement near the source of pain rather than exactly where the pain is can be beneficial.  Because everything is connected, movement as low as your hips can produce movement in your jaw, and impacting the area less directly can be easier on your system.


During a VT or FT session (or when I'm working at home), I sometimes feel dizzy or off balance.  But whether it's part of a session, or on my own, it's OK.  My exercises are, and continue to be, titrated to me, and Joyce and Ann both know me and my body well.  So I know I need to push through in order to get better.  I should add that this "pushing through" ability on my part has increased as I've made progress. 


Glasses, something everyone is familiar with, are an important tool for VT.  There are a number of kinds of glasses that are used.  For me, low level reading glasses and sunglasses are both tools.  My reading glasses have a slightly blue tint, my sunglasses a darker blue tint.  The tint color was something I gave a lot of consideration to, as well as the type of frame.  Neither of these considerations are an unusual part of VT.  Even non prescription glasses change the way light (and thus images) come into your eyes, so ANY glasses will affect your visual perception.  There is also the distraction of the edges (whether you wear rimless or not) of the lenses, and how your brain deals with images as you move.  

All of this comes into play when I wear glasses for reading text or musical notes.  I also have to practice wearing sunglasses; I put them on and go outside, learning to navigate steps, and movement.  Mobility is a multi-processing task.  When I walk outside, there are a number of elements that my brain needs to process as I move - some of this is inner ear, some is sensory messages from my body, and some is visual - and it ALL gets processed by my brain. 

I do FT and VT exercises everyday now - being able to do more on my own was a definite sign of progress - but FT and VT are also in a sense incorporated into my day through all my activities.  Doing a body check, breathing, writing this article is all part of my rehab.  The specific exercises I do are a more focused way for me to make progress, and are important, but it's really everything working together - exercises and awareness as I move through my day - that makes it all work.


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June 12th 2015 More of my story; vision - complex, and too often overlooked

NOTE: Use Google translate to listen if needed

If you Google on Vision Therapy or Vision Training (VT), you don't come up empty.  Likewise if you do a search for Convergence Insufficiency.  That's a good thing, but begs the question as to why more optometrists - or ophthalmologists - don't routinely check for issues beyond eye health and things like near or far sightedness.  Likewise, adults who complain about dizziness and/or vertigo don't get asked about their vision.  To me, this is a huge problem.

I started doing VT in May of 2013, over a year and a half after I got sick.  I'll discuss more later about how I ended up in VT, but it's worth noting that not long after I started, I talked with my therapist Ann about why I had my disorder.  I never had blurry vision, which is a fairly commonly reported problem for people suffering from vertigo.  Ann said that she suspected I'd had a vision problem all along that was never diagnosed.  Given her many years of experience as a therapist working with Dr. Margolis, a Developmental Optometrist in the Chicago area, who has an excellent reputation, this got me thinking and wondering.

I do VT for Convergence Insufficiency (CI).  This means that my eyes don't work together properly to send coordinated messages to my brain.  The VT is retraining my brain.  BUT, I'm convinced that my CI didn't start when I got sick in 2011.  Specific Google searches for adults with CI don't come up with anything, which I think is because behavioral or developmental vision problems like CI start with kids.  The problem is that kids often don't talk about how they see something.  It's not exactly playground conversation, so if nothing shows up in their school work, no one knows.  Unfortunately even when something DOES show up, something like CI is not typically the first thing that's checked.

Looking back, I think there were some signs I had a problem.  I hated large textbooks, especially the ones with pictures as well as words.  I remember reading lines of text in history books, and having no idea what I'd just read. I think tracking long lines of text was really hard for me.  And math was a struggle - trying to make sense of numbers all over the page.  I eventually decided I was really bad at some subjects, though in retrospect, I think I was actually doing really well.  Reading small paperback books was easier for me.  I liked reading aloud, which makes sense - reading out loud is slower, so it's easier to process, and it adds the audio component.  And reading music worked fairly well, though even into adulthood, I was bad at sight reading.  I was never able to watch movies in 3D, had motion sickness, and was somewhat prone to headaches. 

So that was back in the 60's and 70's.  I recently connected with my friend Michael on FB.  He's in his late 20's and did not receive the care he needed when he was young.  When my older daughter Leena (who is 19) was in school, again, no one tested for CI or Strabismus or Exophoria, etc.  Leena has since told me she saw double, but didn't know other kids DIDN'T see this way.  No one ever asked her.  Her writing was small and neat, and she never appeared to struggle academically.  Finally in her senior year of high school, after I'd begun VT and she came home complaining of horrible headaches, I decided it might be a good idea to take her to Dr. Margolis.  I took my younger daughter Cara as well.  I do believe there's a genetic component to CI, and sure enough, both Leena and Cara were diagnosed with CI.  Only Leena's CI was serious enough to require VT, which she did. 

So now back to me.  During the first few weeks after I got sick, I saw a neurologist several times.  I remember telling him that I was having trouble with my eyes, that I couldn't read.  He basically blew me off.  So I went home and said to myself "OK, I am going to read," and proceeded to read a few sentences in a book.  I looked up and my world was spinning.  The spinning stopped, but clearly something was very wrong.  Over the course of that first year, when I was tested to see if there was anything wrong with my ears - nothing medically significant was found - no one asked me about my eyes.  Some of the tests were horribly difficult for me, and I remember thinking "is it really supposed to be this bad if my ears are normal?!?"  I remember seeing someone post that the tests were "fascinating!"  I was too busy feeling miserable to be fascinated.  After I had already begun VT, I was examined by a neuro-ophthalmologist to confirm Dr. Margolis' diagnosis.  I was again told there was nothing "medically significant" wrong with my vision.  Surely just because a problem doesn't get fixed with surgery or medication doesn't make it insignificant!

Now more about how I ended up doing VT.  The first time I saw my Feldenkrais therapist, Joyce, I told her that I had something wrong with my eyes.  She said I might want to go to a developmental optometrist, but that she didn't think I was ready to handle doing two kinds of therapy.  I'd never heard of this kind of doctor.  I'd had a check up with my ophthalmologist early in my illness, but that exam only covers focusing issues, and disease.  I told him what happened to me - at that point the only diagnosis I had was BPPV (treated with Canalith Maneuvers) - and he said nothing.  I'd already been tested for Parkinson's - this is a pretty easy, standard test.  I'd also had, among other things, an MRI, hearing test, etc.  Vision is key to balance, and yet no one ever talked about my eyes.

I wrote in "When my challenges really began" about my hand problems, which I believe stem (as happens to too many musicians) from what ISN'T taught to flutists, and I suspect many instrumentalists. I am now learning to pay attention to my body.  Carpal Tunnel Syndrome was a trauma to my system.  I believe it's quite possible that getting sick was also trauma to my nervous system, and made a vision problem (CI) that I already had to a lesser degree MUCH worse.  I also have problems with my Vestibulo Ocular Reflex (VOR) - (from Wikipedia - This reflex functions to stabilize images on the retinas (in yoked vision) during head movement by producing eye movements in the direction opposite to head movement, thus preserving the image on the center of the visual field(s).)  I think the combination of getting sick, and waiting a long time till I even had my MAV diagnosis, not to mention my CI, were bad for me regarding my vision problems.

I don't believe that all optometrists or ophthalmologists should do as complete an exam regarding functional vision as developmental or behavioral optometrists do.  I DO believe, however, that ALL eye doctors should do some basics that go beyond how well patients focus, and whether or not their eyes are healthy.  Both of those are very important, but function is extremely important as well.  Examining some functional elements should not be a specialty, although I think VT should be left to the specialists; the eye doctors who truly understand the functional elements of vision.  I ALSO feel strongly that adults who complain of balance problems should have vision tests that look for functional problems.  Last but not least, because vision - not only near and far sightedness but vision - is SO important on multiple levels for learning, teachers need to be on the lookout for tell tale signs of vision problems. 

Having more understanding of how all the pieces came together for me doesn't change my disorders.   It DOES make me more determined to have people realize how important it is to get early proper diagnosis, whether you have a vestibular or vision disorder, or a combination.   Our bodies are not made up of all these different compartments, one separate from the other; one system can easily impact on another.  Having a balance problem which is diagnosed as a vestibular disorder doesn't mean that it's all in your ears - vision is a complex sensory system that mustn't be overlooked.


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May 29th 2015 Figuring things out, putting in the effort

I've been thinking about my goals - what I'm working towards - and actual game plans right now.  Even though not doing the work - not doing the rehab homework - is tempting sometimes, I know if I don't put in the effort towards my goals, in the end that would leave me very frustrated.  This got me thinking about words that I've used, seen, and heard a  lot:  "limitation," and "challenge," or "challenging."  I decided to look them up on Dictionary.com.  
These are some of the definitions I found:

Limitation -
Restrictive weakness, lack of capacity, inability or handicap
Difficulty in a job, or undertaking

Challenge -
a call or summons to engage in any contest, as of skill or strength
a call to battle

Interestingly, the word "challenging" has a very different definition, and is more of a pairing with "limitation" - "challenging" is "offering a challenge, testing one's ability, endurance".

When I look at all these definitions, the ones that jump out at me are "lack of capacity" for limitation, and "testing one's ability, endurance" for challenging.  Lack of capacity means capacity simply isn't there, and I think sometimes for some disorders, that's accurate.  If you don't have the use of a body part (like a leg), that really does qualify as a lack of capacity. However, I think in a lot of situations, this definition of limitation is a bad, outdated one.  There's lots of gray areas with a lot of disorders, many times when I think using the word "diminished" instead of "lack" of capacity would be much better.  Standing, sitting and walking are different for me than they used to be.  My ability to balance myself isn't, and was never completely GONE; I AM able to walk, to sit, to stand. 

The phrase "call to battle" for challenge surprised me, because battle is a strong word.  But in a way, it makes sense.  I think of a call to battle as marshalling the forces, which to me (in terms of my invisible disorders) means gathering up tools, and using those tools to succeed.  In my case, and hopefully those of others, tools can be diet, various therapies, coping mechanisms - basically anything that you use to help you to be successful.  And I definitely think the word challenging is very fitting... your abilities and endurance can be tested, even pushed to the limit.

So there's that word again - limit.  The real issue to me is figuring out when, or if, a limitation really is a stop sign.  When does a limitation require a work around, or acknowledging that something can't be done, and when does it  not?  More importantly, when does a limitation push you to challenge yourself, to say "OK, what tools can I use to move through this?" 

That question brings to mind the following quote from Michael J Fox - if you haven't read his autobiography "Lucky Man," I highly recommend it. 

"Acceptance does not mean resignation.  It means understanding that something is what it is, and there's got to be a way through it." 

I thought about the quote in terms of how I live my life.  For me, this quote means that you don't deny the reality of your situation, but you don't give in to it either.  Saying that there's "a way through it" doesn't mean that you cast aside or ignore your problem.  But you keep moving through life with it, figure out how to still achieve your goals.  I didn't know what limitations I would end up with - none of us ever knows that.  I did sometimes wonder if my Reactive Hypoglycemia would morph into Diabetes.  Instead, I ended up with Migraine Associated Vertigo (MAV) and pronounced Convergence Insufficiency (CI) with complications, invisible disorders I'd never thought about or heard of before. 

I've talked a lot about my Feldenkrais and vision therapies, and my therapists, that I'm grateful to work with good people and to be making progress.  Even with my therapies, I think there's a good chance that I will always have SOME degree of limitations.  I don't think that saying that I'll have limitations, even with all the work I'm doing in my therapies, is "throwing in the towel."  I'm NOT saying exactly what my limitations ultimately will be, that I'm done putting in effort to improve.  Everyone has limitations; maybe mine came a bit sooner than I was expecting, and particularly regarding my vision disorder, not necessarily what I was expecting. 

The other side of some degree of limitation, is challenging myself now, in the present.  The choices I make, the small - sometimes very small - goals I set in order to achieve bigger goals.  This is why rehab is such an integral part of my life.  I talk to my therapists about my goals, and then we take things apart, break down the goals to decide what the pieces are that I need to achieve and how I can achieve them.   I also want to say that I realize not everyone reading this has the answers they need, and/or the treatment they need.  I am always hopeful that that will change for those people, and I hope that sharing what I learn along the way is helpful. 

I don't know if this will always be the case, but I've learned that right now, if I don't expose myself to something frequently enough, it feels like I have to re-learn it when I do it again.  When I attend a large event - and large to me is really anything that more than a dozen people attend - it's challenging for me.  I am pushing my current abilities to handle noise, lots of people moving around, etc.  But being able to go to social events, be around people, is important to me.  So I went to the Confirmation class Shabbat service, and the last day of Sunday School.  I plan what I can, use coping skills I've learned, and these events push my level of endurance.  Attending events like these is tiring; I do what socializing I can, and then I need to go. 

Sometimes doing something pretty ordinary can be challenging for me now.  I planted some flowers in flower pots recently, with the help of my daughters.  I took breaks, and by the time I was done I knew I'd pushed myself.  In terms of balance and visuals, it was difficult.  I knew it would be, but I decided I wanted to participate, and I love looking at flowers, especially after the dreariness of winter.   

These are just two examples; there are choices I make all the time.  I remember that there are certain things that build on other things.... this is where being able to talk to my therapists is really helpful.  My list of major goals - like socializing, and teaching flute again - isn't a long one.  I need to keep it manageable, and that only happens if my list is short, because there are a lot of pieces required to complete my picture.  Sometimes my picture feels much more like a puzzle, than a coherent whole.  I think of too many things I want to work on, too many pieces.  So then I need to step back and say "OK, one small step at a time."  And eventually - I don't really have a timetable - I can add something.



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June 7th 2015 Getting people's attention, thinking about other's experiences....

Note:  Use Google Translate to listen to this if needed

It's hard for people to "get" something when their own experiences aren't really that similar.  This "getting it," or understanding, or lack thereof, can come through in really small ways.  I've been thinking about this for a number of reasons, one being that I finished listening to Amy Poehler's book "Yes, Please" recently.  There were a couple things that really stuck out to me, and it also got me thinking about how celebrities can bring a great deal of attention to various issues.   How things like catchy slogans or gimmicks (for lack of a better word) - like the ice bucket challenge for ALS - can raise large sums of money.

I thought that though Amy Poehler recognizes how lucky she is, and appreciates what she has achieved, there was something a bit insular in general about her outlook.   This really came through at the end of her book, when she writes about technology.  She talks about how people (herself included) are addicted to things like smartphones, e-mail, etc.  This is her experience with technology, and she completely overlooks the ways in which technology helps people.  For example, allowing people - like myself - who are limited in terms of what they can DO, to connect with people online.  I'm not saying she should have focused on that, but she doesn't even mention how technology can make a real difference in people's lives, and I suspect she's not the only one who doesn't think about this.

This lack of reaching outside of your own experience, hearing what someone else is dealing with, frustrates me.  My invisible disorders make me sensitive to issues that I think some people don't spend much time thinking about.  I've experienced, in small ways, other people not "getting" something because it's beyond their own experience.  I know it's difficult to imagine being in someone else's shoes, but it's also really important to try to do just that, or to acknowledge you really DON'T know what something is like.

I know people don't always want to put in the effort to think about others.  Sometimes I'm not in the mood to think about other people's situations.  I'm very into myself, and I really don't want to hear about someone else's news, good or bad.  I'm guessing that most people with chronic health conditions (and some who don't) feel this way; have times when they're not up for hearing about someone else's life.  And some things are easier for people to think about than others.  I think my MAV is a bit easier to grasp in some ways, although no two people's experiences are identical.  My vision disorder is definitely harder for people to "get"; many people don't understand the complexity of vision. 

Which brings me to my point about celebrities and raising money.   Celebrities - people who are high profile - can have a truly magic touch in bringing attention to an issue where it is sorely needed.  This has happened numerous times.  While there have been a few celebrities who have given an occasional interview about their vestibular disorder - Kristen Chenoweth and Ryan Adams come to mind - to my knowledge there hasn't been anyone who has really held the public's attention. 

I feel jealous when I hear about the ice bucket challenge, or a celebrity who is blowing the door wide open about a particular issue.  It would be so absolutely wonderful to have someone do the same thing for vestibular and vision disorders.  Vision is so intricately connected with balance; a discussion of balance isn't complete without including vision.  So it makes sense to me to pair vision with the vestibular system, in terms of bringing both into the light of awareness.

September brings VEDA's Balance Awareness Week, and I'm hopeful that it will be successful.  If you don't have a particular person who can get everyone's attention, I think it really does take an organized effort to create change.  Unfortunately, I haven't found such an organization for non-disease related vision problems for adults.  So I will keep posting what info I find that helps bring awareness about the complexity of vision.  How important vision is for processing all the sensory input in the world around us, and how integral vision is for balance. 

I believe there's a growing awareness about health issues in general, and people like myself with invisible disorders need to advocate for this awareness.  Because then there can be understanding and hopefully learning, and money for research that provides answers.  I don't believe that doing this advocacy, or being on the Ambassadors Board of VEDA is why I got invisible disorders, nor why anyone else did, for that matter.   But it's definitely good to feel like I can, through sharing my journey, offer hope and make a difference towards building awareness.

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