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 2015

December 30th 2015 One day at a time...

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

I'm don't make New Year's Resolutions.  I'm more into the idea of reflecting on what I'm actually doing, assessing and tweaking as necessary.  I've said recently that my rehab is clearly a very long term deal, meaning not months but years.   That means I have to take to heart the expression "one day, one step at a time," and focus on what I'm doing each day.  As long as I'm doing that - not getting too caught up in the "what ifs" of exactly how long this "long term deal" is gonna be - I'll be OK.

So, if it's really one day at a time, I asked myself "what do I actually DO each day?"

This is what I came up with:

Rehab exercises - a bit less on days I have either VT or FT, or I actually do something special, but I still do something

The only other self-care item I'll mention is that I rest every day in the early afternoon, and take breaks during the day as needed

Make sure I play my flute a little bit every day

I'm trying to make a point of writing something each day - it doesn't need to be a lot, and it doesn't have to be profound - I want to get my brain working in the writing department every day

Hopefully I have an audio book I'm listening to so I have something interesting/fun/entertaining/whatever to listen to each day

Listen to - and post on FB - music every day.... I typically actually listen to more than what I post

Hopefully find something interesting/fun/whatever to share/post on FB and connect with one of my FB friends - I need to limit my online time due to my disorders

Generally I have some housework to do, which might be laundry or cooking - it could be something else... I don't enjoy the housework (and there's some stuff I'm unable to do), but hey, it's gotta be done, and actually a good thing that I CAN do some of it

Talk with my husband, as well as my younger daughter... I get to talk to my older daughter when she's on break... otherwise, it's mostly a bit of FB chatting with my older one

Take a walk every day, typically with my husband, and occasionally with a daughter

There are some things I do that are not every day (i.e. attend monthly Youth Education Comm. meetings for our congregations' Sunday School), but I really needed to see the basic stuff I fill my life with every day.  Post my disorders, when I'm feeling down, I tend to feel like everyone else has a life, and I don't.  I can see from what I've come up with that though I could be doing better, I could definitely be doing worse.  And who knows, maybe I even forgot something.

Now to my readers with invisible disorders, I'd love to hear from you! If you're comfortable sharing publicly, go for it.  If you're not, you can pm me. How do you spend your time?  To those who post publicly, maybe someone will get some new ideas.  One basic rule - please keep this positive.  We all have our bad days, but as we move into the new year, I thought thinking about the good stuff I try to fill my life with NOW would help. 

Thanks!  And here's hoping everyone sees improvement in their health in whatever ways are needed... lastly, spread some kindness - it can go a long, long way.


December 24th 2015 Dealing with stress....

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

Everyone's got stress in their lives, but realistically, some have more stress than others.  I think it's safe to say that dealing with invisible disorders guarantees some days when the stress level - whether it's fear, anxiety, whatever - gets a bit high.  There are situations that are stressful - because of how I am challenged, how demanding something feels to me -  that simply are not typically stressful to others.  So I've been thinking about ways to manage. Not manage my disorders, but how to manage my stress.

As we continue to move through the holiday season, I think about holiday celebrations.  I want to participate when I can in celebrating, but celebrations are challenging, and somewhat stressful for me.  I think this is true for anyone with various invisible disorders - vestibular, functional vision, and mental illness just to name a few.  It's easy to get over-stimulated and overwhelmed.  I've learned that I can't be shy about making a request in order to make something easier for myself.   Please don't question me if I do - just believe me that I am trying to get what I need in order to take care of myself so that I am able to enjoy myself.

If I need to take a break, I do it and don't make an issue out of it.  This may mean telling someone that I need five minutes before doing something.  I've learned that bathrooms are my friend - they are often the only quiet space.  For those who need to make these requests, remember that there's nothing wrong with advocating for yourself - you are not being selfish - you are taking care of yourself!

Holiday season, which means Winter Break for students like my daughters, means that routines are more difficult to maintain.  However, for various reasons, I need to maintain at least the basics of my routines.  I try to the extent that I can, to be flexible, but I can't disrupt all of my routines in any given day.  Following routines requires less cognitive processing, and if I don't have to THINK as much about something, I have more energy for other things.  The structure, routines of my day also help me feel grounded because I know what to expect, and this reduces anxiety.  Routines are also what keep me on task with my rehab.  This is important, because if my body/brain gets unfamiliar with my rehab, I don't think my response will be as good.

Another stress management skill I've been thinking about is the concept of compartmentalization (I'll call it comp for short).  Comp - to me - is about being really focused thinking about something that's a really big, ongoing stressor.  You make an appointment with yourself - let's say for 3 p.m. for 15 min. - to think about something you need to deal with that is causing you a lot of stress.  If making an actual appointment doesn't work, I think you can at least tell yourself when something comes into your head, "OK, I'm going to let myself think about this for 15 minutes, and then I'm stopping, no matter what." 

Getting too caught up in THINKING about what I need to do, instead of actually DOING what I need to do is something that for me can be a stressor.  Thinking about rehab is good up to a point; problem solving when something doesn't work can be productive.  But worrying a lot about my rate of progress, or stressing out about when or how to do something is not positive. 

If I do make an appointment with myself, I might have jotted down a word or phrase that came to mind at some point, and then during my allotted comp time, I use that note to help me think.  During my thinking time, I might do some writing, to help myself stay focused.  When my time's up, I'm done.  Whether I've completely solved the problem or not, I stop.  Staying focused, and stopping even if I haven't solved my problem completely will take some practice, but I'll pick it up again during whatever I decide is my next allotted time.  I may also decide that I need to talk to Ann (VT), Joyce (FT), or my husband. 

Thinking about setting a structured time to focus on a big stressor made me notice something; thoughts come into my head fairly frequently that are connected to something I'm stressed about.  So the first step for me in this whole comp thing was an awareness of my thought patterns.  I think when we have time on our hands, our mind looks for something to occupy itself, which can be good, but can also be bad if we use the time for worry.  So I need to say to myself "later," or "not now," and then find something else to think about - or do something.  Listening to music, or thinking about something good (like my pets) is often a good way for me to re-direct my thought process.

Finally, I recently listened to a video about meditation, which is really - to me - about mindfulness.  The basic idea in the video is that it's actually OK - even good - for your mind to jump around when you meditate, as long as you go back to the meditating part.  Every time you reign yourself back in, it's good for your brain.  I'm not sure, at this point, if when I do my breathing exercises I am meditating.  But I do know that when I sit and focus on my breathing, even when my thoughts wander, I eventually feel more calm - my sensory system does seem to settle down.  Which means I'm less tense, less stressed - and that's really what I'm aiming for.


December 16th 2015 So what's my flute/rehab plan now?

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

I've said before that I know playing a flute isn't something everyone is striving for, but I believe that a lot of what I'm working on and trying to figure out is applicable for whatever kind of rehab goals people have. 

I feel, in a way, as if I need to approach flute playing as if I were a beginner. OK, not a complete beginner, learning to blow into the mouthpiece, but still very basic given how long chronologically I've been playing.  My brain needs to learn new routes, new habits that work well for me, rather than going down well-worn routes that did not.  I also need to do some reintegration post trauma - the trauma of getting sick.

So what am I actually going to try to do?

It isn't all about actually playing my flute -  some of the activities I do impact the skills I need for flute playing, so even if I'm not playing my flute, I'm still doing something that counts.  Standing and washing a pot, or looking through my local paper is relevant.  There's a lot of activities that incorporate important balance/vision skills. 

Timing matters - it occurred to me that I need to play my flute - or do anything challenging for that matter - when I'm fresh.  So I don't play when I'm getting tired.  Doing anything difficult when I'm running out of gas doesn't make sense; my brain's not going to absorb learning well when I'm tired.

Making sure I DO my rehab exercises - this means figuring out at least a rough schedule of when I do things.  When new things are added, I have to see what works for me, so I'll actually do whatever I need to do.   And some of my exercises actually make sense to do before I rest; sleep is the best way for my brain to absorb and learn these kinds of new skills. 

Joyce has commented that sometimes she recommends something and then her client doesn't do it.  Dr. Margolis has talked about this as well, and I've seen comments about this on FB groups.  When you get to the point that you can do your homework, you've really got to do it.  The good part about doing my exercises is that I feel like I'm doing something positive for myself, which is good since doing rehab is at least a part-time job.  In my opinion, it's more demanding than many paying jobs!

Don't go that route again - Back when I first started playing sheet music again, I tried to move forward too quickly.  Neurologically speaking, I have a combo of functional and not-so-functional skills, and my brain needs to get the message that new functional stuff is the way to go.  I need to build my reading skills back up, reworking what wasn't working well before.  I also need to rebuild my posture and VOR skills (this is partly about where my body is in space).  This requires some awareness so I can adjust when I notice something that doesn't work well.

Routines - I have, and still am, developing some routines which help me remember what I've done re rehab.   I'm also more likely to do my exercises with this kind of structure.  Even with breaks or pauses in between, it works better for me not to do all my challenging exercises at once. 

Teaching myself - a flute student often has weekly lessons, so I said to myself "OK, so you're your own student."  My goal is to put in one small bit of challenge once a week.  I may do the same challenging bit for a month - four times over four weeks - before I move on.  I don't know yet.  The way I see it, I think I can figure on at least one good enough day each week.  I don't need fabulous days, just good enough days. 

I'm not going to treat myself like a complete beginner, but I will do something that's basic.  This is frustrating, but I think it's the only way for me to be successful.  I'll need to be flexible re figuring out when to add in a new challenge, or when it's a good day to do that something. 

Curiosity - This is a tough one, but I'm trying to notice, be aware of how something feels, in more of a curious way rather than getting scared and anxious.  Getting anxious is easy, but usually just makes the situation worse.  If I can be mindful and notice something, then hopefully I can try to adjust.  And I might even notice something positive.

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December 9th 2015 I always come back to music....

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

Music, as anyone who's been reading my blog knows, really matters to me.  You also know that my rehab plays a large role in my life.  Rehab, for me, needs to be about more than moving more easily through my day.  That's why, I realized, I'm glad that I have a big goal to work towards - doing what I choose to with my flute.  I thought recently about possible goals I'd want to try to achieve, and all of them involve something that's a major challenge; doing more with my writing, possibly speaking publicly someday about some of what I write about, teaching flute again, or maybe something I haven't even thought of yet. 

I'm comfortable for now with what I'm doing with my writing, and the other possibilities are a bit fuzzy.  But playing my flute more, and teaching flute are crystal clear; I want these.  I want to pick up my flute, take out whatever sheet music I want, and play.  I still have a music stand out, with some music books on it - I've never been able to bring myself to put any of it away.  Rather than taunting me, I've decided now that that's a good thing.  I don't want to avoid sheet music out of fear or anxiety about what will happen, so my music stand will be my motivation.  And I want to welcome a student into my home, and see their eyes light up with excitement when they produce music. 

I have a decent singing voice - I can carry a tune - but I used to wish I had a better voice.  I think that's one reason I love the flute.  And when James Galway came on the scene, that helped.  He's an incredible flutist, but also makes his music accessible because he's fun, and has always performed a mixture of music, which I really like.  I also discovered that I'm able to make my flute sing; I can play the vocal line of a song, while I hear the song in my head.  I love the bell-like sound of the flute in the higher register, and the warm, resonant sound in the low tones.  So my love of the flute was born.

I developed hand problems before I got sick in September 2011 - I wrote about this in my piece "When my challenges really began...".  I ended up not being able to play my flute for about a year - that was a long year without music.  Of course I listened to music, but not being able to make music was awful.  I don't know how many of my readers have something in their lives that is like music is for me.  I think of the quote I've seen "music is the sound that feelings make," but it's more even than that.  I love that music is a universal language; it speaks to everyone, touches everyone, connects people and can break down barriers.  And yet it can also be very personal, something just for me - or whoever is filling a room somewhere with music.

I'm been rethinking how I approach this goal; what pieces, what skills I need.  Acquiring the skills is the issue - there's not much difference between reading one page of sheet music vs. three.  That's a question of stamina.  A lot of what I need are skills I'm already working on - spatial (VOR), eye gaze switching, multi-tasking - but I need to break them down a bit more.  I am now working on exercises that help me to do that, and then help me to build those skills.  That's the job of Joyce and Ann and Dr. Margolis, with input from me.

I hope that everyone can find something to be passionate about.  Again,  having something of my own, that I care deeply about, to work towards is a good thing - I can use it to motivate and energize myself.  If I didn't have something, I think it would make rehab harder, more arduous.  Not that working towards more ordinary tasks is bad - it's not.  Playing my flute more, and hopefully teaching again someday are NOT the only things worth working towards in my life.  But since my rehab is clearly a very long term deal, having a goal that pushes me beyond the regular tasks feels like a good thing.  And it really is true that journeys start with a single step; for me every effort I make, all the FT and VT exercises that build on each other, every time I notice something different, all of this that helps me work on something is a step, even if it's a very small one.  It's like every single thing I work on, every note I produce is getting woven into an ongoing song. 

NOTE: Looking back five years - how long ago I made my last recording -  I like some of my YouTube videos better than others, but I thought I'd share a link here.  Have a listen if you'd like - let know what you like :-)


December 2nd 2015 Reflecting on my rehab, my future, and my flute....

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

I'm 54, which I don't consider old.  I have one daughter in college, and one who is a senior in high school. So my mind drifts to what I'm doing with my life.  I don't want to let my disorders define myself and my future, though I want to be realistic.  I recognize that I'm fortunate to work with an excellent OT who is trained in Feldenkrais Therapy (FT).  My FT has, and continues, to help me tremendously.  Of course, my vision disorders  - for which I do Vision Therapy (VT) - are part of my picture, intertwined with my MAV, and significantly impact my life.  VT works, and I'm committed to working with it, though my middle aged system doesn't change as quickly as a young child's does.  I'm encouraged whenever I see posts about someone my age or even older who is doing VT and seeing improvement - that's pretty cool!  

I wrote a piece back in July about my goal of getting back to teaching flute.  I've been thinking a lot during the last few weeks about that.  It's been about a month since I had a significant setback - a setback that required me to pay more attention to my pacing.  I've been remembering when my goal was to take walks again.  I started out walking down our driveway - it's kind of long - and then back to our house.  After a few days I walked the driveway plus past one house, and then back again.  After a few more days I added another house.  Eventually I could walk an entire block and back again, but it took a long time. 

I think reaching any of my goals, but in particular flute teaching, is like walking.  Each piece, each skill I need to re-learn is like walking past the houses.  The big difference is that each step is going to take me more than a few days.  That's one of the realities I'm realizing; how long my VT and FT rehab will take, and how much effort, and commitment is involved.  My rehab is one of, if not the, hardest things I've ever done.  My VT and FT move me forward, but sometimes I don't understand or realize how doing something will challenge me until I start moving towards it. 

I know that my future is - as is anyone's - somewhat unpredictable. I've said before, and I'll say again - I wish I had more answers.  Part of me thinks "well, make your own answers."  To an extent I can do that, by putting out effort and building - or rebuilding - my tool box of skills.  I don't know if this journey I'm on will have a distinct end or plateau, a point at which I'll say "OK, I'm good with where I am."  Where will I be in a year, or even six months?  All I really know is that I'm committed to working to improve.  Ann is good at being my cheerleader and pointing out when I do something I couldn't a few months ago, as is Joyce.  I actually realized on my own the other day that I did something I wouldn't have been able to do a few months ago.  Recognizing that was, to me, as valuable as the exercise itself. 

Given what I now know about vision, it seems appropriate to me that that word has (at least) two meanings - how we process info, and a picture of where we want to go. I haven't decided if I want to perform on my flute again, or if how I reach the public will now be through the written word.  I love to write, and I'm grateful that people are reading my words - and that VEDA helps me to reach people.  But I still wonder about the performance part;  I have very mixed feelings about performing.  I love playing with other people, but I DON'T love how most rehearsals are done.  But playing with other musicians in an unstructured setting - that's a different story.

Sometimes I think I need to simply stop thinking, and just live.  Stop thinking, get out of bed, and start moving through my day.  Find out from the internet - and Ron - what happened in the world around me.  Stop all of these questions floating around in my head, do what I need to do.  Do some writing, do some of the ordinary tasks that make up a person's day.  And for a few precious minutes, quiet my mind, and play my flute.  


November 24th 2015 Healing time....

NOTE: Please copy and paste into Google Translate if needed.
Holidays fill me with mixed emotions.  I'm grateful for what I'm able to do, but I always miss out on things as well.  So as I approach the holiday season, thinking about the last month or so, I find myself thinking about finding my own peace.

I discovered a wonderful clip on YouTube of John Denver playing a song called Healing Time on Earth.  I don't think this song was ever recorded in a studio.  In the clip, he actually composes some of the song on the spot, and it's really lovely - he sings it like a loving lullaby.  There is beautiful imagery - as in all his songs - of nature, but I feel this song can be about any kind of healing.  A healing time is also inward, internal healing.  If someone's been through a trauma, they can't just move forward without giving themselves time first to heal on the inside, emotionally.  I recently listened to an article about this inner healing, and that it isn't a linear process, though I'm sure most of us wish it were!

When I got sick, I was scared and overwhelmed.  I had no idea what was going on, or what to expect, and I don't think I could really process the emotions of it all.  I've gotten feedback from people who have been sick far longer than I have, from people who just recently got sick, and those who are still trying to figure out what's wrong with them.  So experiences are all across the board.  We're all in different places with regard to our disorders, but I think we ALL need to have healing time. 

I feel like since I've been moving through my setback, I'm finally processing what happened to me.  I'm trying to be right here, now, looking around and saying "OK, this happened to me."  And sit with it a while.  Let my emotions come when they come, and not try to figure everything out about where I'm going. I want answers now, but I need to let this process, my processing, unfold.

In an effort to feel a bit more like I'm contributing in my not online life, I recently became a satellite member of my congregations' Membership Committee, acting as liaison to the Youth Education Committee of my congregations' Sunday School (a committee I've been on for years).  I told the Comm. Chair - a very nice, very dedicated woman - that I couldn't attend the meetings, but I could give ideas and talk to people.  That IS a contribution and she seemed thrilled.  I had the unsettling feeling or realization that I was going to come up with ideas for events in which I can't actually participate.

Thinking about what I can't do, I feel part of my healing, finding my peace, is in truly believing that having invisible disorders is not my fault.  No one ever talked to me about how to take care of my body as a musician.  I didn't realize I needed to advocate for myself for my MAV diagnosis, knowing what questions to ask, what info I needed - all while being sick!  I knew nothing about functional vision problems.  So here I am, realizing that I couldn't ask questions I didn't know to ask.  And realizing that being angry and sad about what happened to me makes a great deal of sense. 

So I need a healing time.  I suspect I'm not the only one living with these invisible disorders who feels this way.  Hopefully, once I've gotten through this very not linear process, I can look around to see what opportunities exist or open up for me.  I have a feeling that I will.  In the meantime, I say to myself, as I replied to an online comment the other day "...we're doing the best we can, and we need to be gentle with ourselves....".


November 18th 2015 Pacing - what's so hard about it, and what's the good part?

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

I struggle with how I feel about pacing.  Pacing reminds me of my disorders; it's GOOD for everyone to pace themselves, but for me it's a MUST.  I realize that everyone has to take breaks, and some people are better about it than others.  The difference is how frequently I need to take breaks, and what I actually DO when I take a break.  I don't, for example, sit down for a cup of tea at a Starbucks, or at home for that matter, and read a book or catch up on the news either online or in a newspaper.  And I don't think most people take breaks as frequently as I do.

For me taking a break during any given day might be getting up and literally pacing around a bit, getting myself moving.  It might be switching activities - doing something less challenging than whatever I was doing.  Taking a break may also mean sitting quietly, doing some Feldenkrais movements, or relaxing breathing and doing nothing.  On a good day, my breaks of sitting quietly are anywhere from five - 15 minutes.  If I'm in need of a longer break, whether because I'm having a tough time, or because I've done something more demanding, I chill out for longer.  I try very hard to only actually lay down for my daily nap.

Regardless of what I do, pacing is a necessity for me - this has become much more clear to me recently.  Based on what I just described, pacing isn't a complicated concept for me, but it's difficult to actually make myself DO.  So I asked myself WHY it's difficult - I mean in addition to the fact that it reminds me of my disorders.

Besides the overall reminder of my disorders, pacing involves a lot of self-discipline.  For me pacing is about what I do during any given day, and making sure I take breaks.  I have to stop, even if I don't feel like I'm in an ideal place to stop whatever I'm doing.  It's aggravating, but definitely necessary. 

Pacing is also about looking at what I've got planned for a coming week, and making sure I have days that do not include an outing.  Going out is good, and I need to make sure if I stay home that I vary my activities, but going out too much isn't good. 

I have to prioritize.  What needs to get done now, or today, and what can wait?  I want to feel productive, so I have to plan.  Prioritizing also means I have to think about my responsibilities to others, what I need to do to take care of myself, and what I want to do that I actually enjoy. I may watch a video of some kind, and then depending on what I watch, take a break or do something else. 

All of this means that I feel like I'm constantly making choices.  I'm constantly thinking about the cost vs. the benefit, always thinking about trade-offs.  I have to think about what demands something puts on me, if/how it challenges me, and what I can manage.  There are always things I can't do, things that if my situation were different, I WOULD do.  At those times, I try really hard to focus on what I WAS able to do.

I've said before, my combo of disorders is unusual, and there's no rehab blueprint to follow.  Fortunately, I feel I can trust Joyce and Ann, and Dr. Margolis - who all have the experience, skills and creativity needed to help me figure things out.  Joyce pointed out that I'm doing much more at home than I could have a few months ago, and I know what she's giving me to do is specifically geared to what's going on with ME right now.  I'm very fortunate to have all of them working with me. 

I think all of these elements - self-discipline, prioritization, making choices - of my life are part of being an adult, but for me they are magnified or intensified.  I don't have much wiggle room, and that doesn't feel normal.  It's not the lifestyle of a healthy adult.  I don't like that - it's a drag.  So why bother doing it?  I mean, beyond not wanting to feel lousy, what's the positive side?

I think the "why" of it all - beyond not feeling lousy and still being able to do SOME things - is that doing what's involved in pacing is part of the key to any forward movement I want to achieve.  Pacing doesn't feel like a positive to me, but acknowledging that I need to pace myself is what allows me to do things.  And I've noticed that pacing in some ways is about being mindful, self-aware, and trying to live in the moment.  None of that is bad.         


November 11th 2015 Grieving is part of moving forward....

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

I've been listening to a full John Denver concert I discovered on YouTube that goes back to 1995, two years before he died.   It's long, so I have to listen in bits, but it's a wonderful concert., mixed in with bits of an interview of his.  I'd forgotten what a talented musician he was -  singer, songwriter and performer.  It's really sad that he died young, and a bit strange that he was one year younger than I am now.

His music feels familiar, and brings me back to when I was in my 20's and listened to him a lot - I think I went to a concert of his once at the Chicago Theatre.  There's a line in one of the songs "...and the moon and the stars are the same ones I see, it's the same old sun up in the sky...".   Sitting listening to the music, I had an image of myself in my 20's, and then in 2011 before I got sick, looking at the same sun, moon and stars that I look at now, and my emotions welled up in me.

Rehab is all about making progress, but there needs to be room for mourning as well.  For grieving for the possibilities that were open to me in my 20's, and a few years ago, some of which right now are not.  Just like any other grieving process, I can't move forward if I don't let myself feel sad.   It hurts, it's painful how my life has changed.  There's a tremendous sadness and I need to let that BE.  I need to give it space and time and feel it in the present.  I don't know how else I can move on, and give room for whatever my life is now, with wherever I end up with my disorders.

So I let the tears flow, and let the feelings fill me up.  I really believe that that's how I'm able to move forward, by feeling this pain, sadness.  I'm not giving up on myself, and I know no one else is either, but these feelings are REAL and as much a part of the process of my rehab as anything else is. 

Some of how I've changed is good... I'm a better listener, there are things I understand that I didn't before, I think I have compassion and empathy - real empathy, rather than sympathy - now.  And I noticed that after I shed the tears, I actually felt peaceful.  I feel like owning the feelings, and then letting go of them, allows me to feel the possibility of moving forward with my rehab, wherever it takes me.

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November 4th 2015 Why I can relate to an astronaut on Mars....

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

It never occurred to me that I'd relate to an astronaut on Mars, but I did.  A lot of people have heard of the movie The Martian, starring Matt Damon, and of course it's based on the book by the same name, written by Andy Weir.  I decided to listen to the book, which fortunately was available.  There were three things in The Martian that really struck me.

1) Community
2) Problem solving
3) Attitude

Mark Watney - the main character or the Martian - had already nearly died twice, about one and a half hours into the book.  So for me, this book is not about suspense, it's about the process.  I'll admit it took a while for me to get into the book - I wasn't sure about an hour and a half into the book, if I'd keep listening.  But I knew he'd eventually make contact with NASA, so I kept going.  The technical stuff gets a bit tedious at times, in my opinion, if you're not really into math and technical stuff, but it does give you a sense of the thought process of an astronaut. I liked the fact that the actual writing style is very straight forward.  I think it fits the subject matter. 

It's wonderful how everyone at NASA pulls together once they figure out that Watney is still alive.  Each person puts in a tremendous amount of time and effort, which is what I mean by community. I really came to care not just about Watney, but about everyone.

I mentioned the time and effort everyone puts in, which brings me to the problem solving.  Mark has to solve one problem after another.  Andy Weir uses the device of Mark's daily Mars (or saul) log to have him share his thoughts, ostensibly with whomever reads the notes once they find him, after he's died.  So we get a look inside someone's problem solving thought process, at least to a degree. 

Given my own lifestyle - particularly getting past my setback - of constantly figuring out how to do things, and what to do if I encounter a problem, I could really relate to this. Granted I'm not, fortunately, in a life or death situation, but the idea is still the same. For much of the book, Mark isn't relying on anyone besides himself, his own brain to survive, which is an interesting concept.  I'm thankful that, unlike Watney, I am not alone.  However, even with my medical team, I still have to figure things out as I move through each day.  It's not like I have Joyce, Ann or Dr. Margolis following me around each day.

Now about Watney's attitude.  Watney writes in his log about a few "temper tantrums," but mainly he's very focused on what he can, and needs, to DO.  His goal is to survive until he's rescued, so it's always about what he needs to do in order to survive, and how he's going to make that happen.  He breaks every problem down into small components, which reminds me of what I need to do sometimes with my VT or FT.  If I'm having a problem, I have to break it down, and say "OK, so what's giving me a problem here?". 

I've learned, and am still learning from my setback.  How specifically did I push my boundaries too much?  What tools do I need from Joyce and Ann in order to move forward more successfully?  Fortunately Joyce and Ann both listen to me well, and have ideas to help me as I work on getting back on track.  Watney has to expend a tremendous amount of effort, but in the end that's OK.  When he succeeds with something, especially if he encountered something unexpected, if he's still alive, it's a win.  I like that - that things don't always go according to plan, that you can't always - no matter how hard you try - predict reactions - but especially when you have to deal with unexpected hurdles, getting through something difficult is a success.

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October 28th 2015 Regrouping, getting myself back on track...

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

Apparently, I've been doing too many new things - both small and not so small (at least for me), so I've had a setback.  I decided to share this because I've said that I'm sharing my story, and since having a setback can happen during rehab, I thought "well, this is part of my story."

It's very frustrating.  Doing new things, challenging myself is supposed to be a good thing.  I noticed that my post about pacing hit home with a lot of people, and I thought to myself "well, I guess I have to re-think my own pacing now."  So I'm dialing it back, and getting back to my baseline.  Then with the help of Joyce (FT), Ann and Dr. Margolis (VT) I'll figure out how to keep moving forward. 

Some people feel the effect of doing something right away, and for some people, for some things there's a delayed reaction.  I think for me it depends on what I'm doing, how aware I am of how I'm feeling, and if I try to push through or not.  As I've said before, pushing through is something you are - I am - supposed to do.  It's tricky sometimes to know when it's a bad idea.

As part of dialing it back, I'm taking extra care to take care of myself.  Getting enough rest and staying well hydrated are both really important.  Paying attention to my breathing, and doing my breathing exercise is also important.  I'm focusing on playing my flute, but not reading music.  I'm grateful I can still play a bit.  I'll just play for pure enjoyment without all the work.  Playing music from the written page is only enjoyable if the cost is low. 

I'll be more selective about what I do on the computer, for example how I use Facebook, since computer usage is very demanding.  I'll figure out some less demanding projects for myself.  Indoor gardening - think houseplants - is one that comes to mind.  As always, I have to figure things out as I go, because I don't have a blueprint.  However, I trust and am grateful that I have Ann, Joyce and Dr. Margolis to help me.


October 20th 2015 Pets; being around animals is a good thing

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

I've always loved pets.  We got our first cat, Goldy, when my daughters were about five and three years old.  We got our dog Cosmo when our daughters were about 12 and ten years old.  When we had to put our cat Goldy down, a year ago last June, I knew I wanted to get another cat.  We now have Maisy, who is about two years old. We've never had any serious behavior issues with Maisy or Cosmo (nor did we with Goldy), and although they still haven't figured out how to play together, they're quite peaceful together.  Occasionally I think there's a bit of sibling rivalry if one is getting attention, but it's never been a major issue.

I truly believe having a loving little animal in your life makes it better, and if you're not a cat OR dog person, I think having some kind of pet is still a good thing.  However, if you are not in a position - whether because of finances, the rules where you live, your health, or whatever - to take proper care of a cat or dog, I DON'T think owning one is a good idea.  Being a pet owner is a big responsibility - not as much as a child - but a responsibility nonetheless.  If you want to be around pets, and can't own one, visit a shelter.  The animals are ALWAYS happy to get attention - though you should make sure you know the rules of the shelter you visit.  You can also have a friend come over with their pet, or if that's not possible, go to them.  I've heard wonderful things about how therapeutic horses can be, so visiting a stable is also something to think about.

Having pets is even more important to me now that I have my invisible disorders.  I love to watch them.  Cosmo is a sweet, good natured 20 lb schnoodle (schnauzer and poodle) who would never be able to be a true therapy dog.  He gets much too excited when he has the chance to meet someone new, but a therapy dog was never the goal.  I love the typical dog stuff - the wonderful hello when we get home, the dog smiles (yes, dogs definitely smile) when he's happy, the curving body when he's getting attention.  I love watching him wriggle on his back with his legs in the air, rub his sides against our couch - he LOVES to do that - and the goofy way he rubs his ears on the floor after I put ear cleaner into them! 

Maisy is equally adorable.  She's fun to watch doing goofy things, like when she rolls over on her back, and then back over again just like a baby figuring out about her body.  She likes to have her tummy rubbed, and of course her head and ears.  Just like a toddler, we have to make sure she doesn't get herself into any serious trouble, and it's funny when I lie on my stomach doing what I call my "sphinx" Feldenkrais exercise, and she rubs against my head.  I don't think it matters at all to her that it's my head rather than my legs, and it's adorable - even though I can end up with a face full of fur.  She's completely cute and entertaining to watch doing typical cat stuff, like chasing imaginary monsters, hunting a stray leaf or one of her cat toys.

When I watch Maisy and Cosmo, I notice how easily they move their bodies, and wonder why we humans are so good at doing things that don't work well for us.  Unlike humans, cats and dogs don't seem to develop bad habits with their bodies - they are able to hold onto doing what works for them without even thinking about it.  I know that dogs (and I think cats as well) can develop balance problems, and of course other health problems, just like humans.  And it's true that occasionally a cat or dog misses their mark with a movement, but it doesn't seem to bother them.  Far more often than humans, a cat or dog will right themselves, and keep on moving uninjured.

I get very frustrated sometimes; I want to be able to improve faster, and not have to deal with all the management and coping stuff I've written about.  I want my improvement to be a consistent, straight, upward slope.  But no matter how much I want that, I know it's not going to happen.  Long term rehab just doesn't work that way.  When I'm feeling down or stressed, caught up in this emotional mess, a snuggle with Maisy or Cosmo is guaranteed to make me feel better.  It's just - for me anyway - an instant stress reducer to feel those warm, soft little bodies.  They are my babies, regardless of how old they are, and they make me feel better. 

Maisy and Cosmo also remind me to be present.  Dogs and cats don't think about what's going to happen in an hour.  Cats are a bit more contemplative, and both animals get to know routines, but it's very different than how humans plan.  Personally, I think being a bit more cat or dog like wouldn't hurt most of us.  That's one reason being with them is a stress reducer for me - I'm just there, with them, and that's it. 

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October 13th 2015 Sharing info is really important...

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

I recently got a message from a friend who wanted to make sure I knew that she'd shared something only so that she could read it later. I messaged her back that not only was it OK to share, but I was glad that she had shared!  One reason I have this blog site is to share info.  The more I've learned about functional vision problems, and how hard it is for people with vestibular disorders to get diagnosed, the more important it has become to me to spread the word.

I've written about the fact that optometrists and ophthalmologists get little to no training re functional vision problems.  I'm talking about diagnoses such as Strabismus (commonly known as lazy or wandering eye) and Convergence Insufficiency (eye teaming).  I feel strongly that this is a huge problem, because vision is said to be 80% of learning!  There are literally thousands of kids whose functional vision problems are being missed because even when their parents take their kids for eye exams, the exams are incomplete. 

I know that I can't single handedly change the training eye doctors receive.  I CAN, however, do my best to inform my readers.  To that end, I'm going to start sharing info I find online - whether it's an article a friend posts, or a video.  I may share some of these directly through my blog site, but FB will be my main vehicle to share.  Please feel free to share what I share! I recently had an online private chat with a friend whose daughter has a problem that may be treatable.  She's only one person, but if everyone who sees my posts spreads the word to one more person, it adds up.

The institution that educates eye doctors to treat functional vision problems is the College of Vision Development -
Vision Therapy is NOT just for kids... here's a direct link to the info for adults, but please take a look at the whole site.....
Adults who have suffered a trauma - whether it was an illness or an injury - can also benefit tremendously from VT.  I am a living example of that.  As my readers know, I'm not done, but I've made significant progress since doing VT.

Unfortunately, Vision Therapy is not often covered by health insurance, and when it is, it's usually after a fight with your carrier.  However, most VTs will help you to try to get coverage, because they truly want what's best for their patients - whether child or adult.  While it is a significant expense, every parent I've communicated with whose child has done it feels it was well worth the investment.  My own now 20 year old daughter had VT, and I'm very grateful she did - and so is she!  I wish I'd done it for her when she was younger, but I didn't know about it when she was younger because her regular optometrist never said a word, since they did not know themselves!  Hard to believe, but true. 

I've been talking here about functional vision problems, but I don't want to leave the whole range of invisible vestibular disorders out.  Vestibular disorders definitely need to be diagnosed more quickly and accurately.  I think neurologists get appropriate training, but need to put more effort and time into listening to patients.  For those of you who found me through VEDA - the Vestibular Disorders Association - - I will still be sharing the story of my journey on my blog.  I will also share posts from the VEDA FB page that are a good fit for my VPIP FB page. 

So please "Like" my page so my posts show up on your news feed - and you'll see the articles and/or videos I share.  Please share to help me spread awareness about invisible disorders.  People suffering from vestibular disorders - like Migraine Associated Vertigo and Meniere's - need to be heard and diagnosed.  Vision and education go hand in hand, and people who suffer a trauma as a teen or adult need to know about Vision Therapy so they too can benefit from VT. 

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October 7th 2015 Multitasking is really fundamental

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

When people hear the term "multitasking" they may picture a professional trying to juggle the demands of a career with family life, or they may picture something more specific; an actual moment in someone's day that requires paying attention to more than one thing at a time. Multitasking takes on a different, I think more fundamental meaning, for some people with invisible disorders.  As I've been trying to push my boundaries a bit more, I've been thinking a lot about multitasking, and what it means for me. 

Multitasking, according to, means performing two or more tasks simultaneously.  The question is what people think of when they think of tasks.  What I'm referring to is when my brain is processing more than one thing at a time.  I don't mean activities, which even for me, are still autonomic, like my heart beating, or my digestive system working.  I'm talking about activities that DO actually involve multitasking, but that people tend to THINK of as one task or activity. 

I've written about playing my flute, and reading.  Both of these activities involve multitasking.  For reading, I have my reading glasses on, which means my perception of my visual world is different than without my glasses.  So that's one processing task.  Reading requires tracking - another task - as well as processing the actual info.  Playing my flute requires processing holding my body in a certain position, moving my fingers, breathing in a specific way, and maintaining my balance.  If I'm not reading sheet music, I play a bit standing, and then finish sitting down.  If I add in reading sheet music, I am still doing the physical act of playing, but also the visual task of tracking the music, and some cognitive processing of the melody.  I do not yet play sheet music standing up.  Playing standing up with my reading glasses on, reading sheet music, is a level of multitasking I'm not ready for yet.

There are plenty of everyday tasks that involve multitasking.  Cooking often involves multiple steps and therefore lots of processing.  Standing at the counter cutting something, standing over the stove, washing pots, etc.  Sitting at a table to do something (i.e. cutting vegetables) uses a variety of vision skills, as well as body movement skills, but is not quite as demanding as standing, because doing anything while standing is more demanding.  Dealing with laundry can be a multitasking activity.  Taking clothing out of the dryer and hanging it up definitely involves multiple processes because you are moving through space, doing something with your hands/arms, and using your visual skills.   

This brain processing work does not have to involve the thought process involved in processing info, but sometimes it does.  Working on my computer is a good example of that, and major multitasking; holding my hands/arms, using my fingers on the keyboard, occasionally looking at the keyboard, looking at different images in different places on my computer screen, using my mouse AND processing the info.   Adults socializing at an event is multitasking.  Like many activities, standing while dealing with eye contact, and processing info is more demanding than sitting and having a conversation.  If there is noise or movement going on elsewhere in the room, that's another element to process.

I don't want to completely shy away from doing an activity that requires multitasking, because I wouldn't improve in this key area if I did.  I wrote in my last piece about pacing, and that is a factor here.  I need to be aware on some level all the time of how demanding, how many tasks the activity I'm doing involves, and how much stamina I have. Sometimes I don't think about it, and then when I feel really tired, I reflect on what I've been doing, and realize my fatigue makes sense.  I don't want to overload my system, but this multiple processing, fundamental multitasking is really important to expose myself to, and is something I am now able to work on in various ways in both my Feldenkrais and Vision therapies.  Writing this piece, thinking through how to explain this, was in itself a cognitive processing exercise combining multiple tasks for me.

For vestibular disorders go to
For functional vision disorders go to


October 1st 2015 Software update on updates....

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

I've mentioned the voice recognition program, Dragon Naturally Speaking - made by Nuance - a number of times, and have been getting e-mails about a sale on a newer version.  I also kept hearing about the Windows 10 update, which is free.   My computer's been acting up lately, so I decided to go with the updates available. 

So far, visually I like Windows 10 better.  It has a cleaner, crisper look.  Although the navigation isn't identical, it's close enough to Windows 7 that the learning curve is fairly easy.  Everything seems to flow smoothly as far as opening up tabs, screens or sites.  Hopefully I will no longer have the slow loading, and generally problematic running that had me re-starting my computer frequently.  Dragon also seems to be running more smoothly, and quickly.

Ron checked that the new version of Windows was compatible with the update of Dragon I wanted to get - that was important.  Because I already had the software on my computer, I didn't have to reacquaint the software with my voice.  My profile was automatically updated.  However, the initial introduction of your voice to the computer isn't that difficult, and the software learns more as you use it more, and update your profile. 

Installing the updates would have been visually difficult without Ron's help, so if you have any functional vision problems, I'd recommend having a family member or friend help you out.  Although Dragon is an expense, it's not in the range of some software programs (I've heard some photo editing software is really pricey), and I think it's worth it.  The audio feature of Google Translate is a good tool, and combined with Dragon, there's so much more available to me online. 

So for anyone who's on the fence about whether or not to use these software tools, and using their computer presents challenges, Windows 10 and Dragon Naturally Speaking are programs to seriously consider.

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September 19th 2015 Thank you

I want to thank everyone who read, commented, "Liked," and shared my posts during Balance Awareness Week 2015!  I've become friends with some truly wonderful people online through VEDA (Vestibular Disorders Assn. -, and the various vision groups I'm on, who actively promote Vision Therapy, and knowledge of functional vision problems.  You can find out more about those disorders at the College of Vision Development -

I don't want to leave Feldenkrais Therapy out of the picture.  FT  - and my wonderful OT Joyce - has been and continues to be a very important part of my treatment.  Neural plasticity and brain retraining take a lot of effort, but is SO worth it!  To everyone reading this who doesn't have answers, don't lose hope and don't give up!!

Please take a look at my other articles - About Me gives a good, basic overview of my situation - and keep on spreading awareness!

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September 18th 2015 BAW 2015 is coming to an end, but the work continues....

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

Balance Awareness Week is coming to an end, but that doesn't mean the work is over. 

I know that the Vestibular Disorders Association - or VEDA - - will continue to work to -

"answer questions and provide education and emotional support...  connect patients with medical specialists through our provider directory of clinics that specialize in diagnosing and treating vestibular disorders, and advocate on behalf of all who are impacted by vestibular disorders." 

Though not officially part of BAW, I also know that COVD - the College of Vision Development - - is working to provide info to everyone about functional vision problems. 

Their mission -
"Improving lives by advancing excellence in optometric vision therapy and rehabilitation through education and board certification.
To drive progress through clinical excellence and research in developmental vision care, optometric vision therapy, and rehabilitation. This will result in wider adoption of optometric vision therapy and increased recognition of its integral role in enhancing learning, productivity, and overall quality of life."

Personally, I will continue to share my story, share info on Facebook from VEDA, and about functional vision problems and vision therapy.  I am also going to try to facilitate a connection between COVD and VEDA - I know from the feedback I get that I am not the only person with vestibular AND vision disorders.  Vision and balance, vision and the vestibular system are so intricately connected, and those who are suffering need to be able to get answers!

If people get the answers they need, they are in a better position to figure out what will help.  I've written about my own treatment plan, which includes Feldenkrais Therapy - FT, and Vision Therapy - VT, as well as following my migraine diet, and getting adequate rest.  Putting effort into these two therapies (with the help of my wonderful therapists), I work every day to make more progress.  I am constantly learning: If I try to do this, what will happen?  If I want to do this, how do I plan?  What's my visual stamina like today?  How do I accept real limitations?  How do I still have some real quality of life? 

Above are some of the questions I ask myself regularly, and the answers vary quite a bit, depending on what I'm considering (what level of challenge), how I'm feeling - which isn't the same every single day.  The constants for me are that I WILL keep working, though the pace, the level of challenge isn't always the same, and I'll keep learning.  I'm grateful that I got my answers, and found wonderful people to work with, but as my friend Glenn said, it shouldn't take so long.  Which is one reason awareness is important - patients and doctors need to keep working and learning together.  It was good news that the House of Representatives officially recognized Balance Awareness Week, but invisible disorders don't go away when the week is over, so progress needs to continue. 

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September 17th 2015 A good doctor visit; doctors and patients can work together

NOTE: Please use Google Translate to copy and paste to listen if needed.

I've written about negative medical experiences, so I wanted to share a positive experience I had.  I found a really good dermatologist - Dr. Johnson - and was really pleased both with my new patient consultation for a routine skin check, and a follow-up to have small moles removed. 

Dr. J. shook my hand firmly, and we spoke briefly during the skin check, and I told her that I had a balance problem.  She didn't ask a lot of questions, but made sure that I was as comfortable as possible while examining me.  She was extremely diligent in her examination, and said that just to be on the safe side - since my mother has a history of skin cancer - she wanted to remove a couple of small moles (they turned out to be normal).  She explained what would happen, said there was no rush, and that was it.

I decided rather than waiting, I would go ahead and get them removed, so I scheduled an appointment.  When Dr. J. came into the room on the appointed day, after shaking my hand, she remembered that I had mentioned a balance problem.  We talked about what position - lying down in some way or sitting up - would work best for me.  In a situation that has some inherent stress involved - I knew it was a minor procedure but still not what I'd call enjoyable - I didn't want to challenge myself. 

I said I would prefer not to lie down, and she told me where to sit, and which wall to face so that she'd still have good lighting.  Obviously, I still wanted her to be able to do her job well.  I asked for a stool because I knew that having my legs/feet dangling would make me feel ungrounded, which I don't like.  She asked her assistant to bring in a stool, which was placed under my feet.  I also asked her to shut the vertical blinds.  I knew that looking at the blinds would bother me; they move, and in this case, I could see traffic and people through the window.  I didn't want to challenge myself visually, and she immediately closed the blinds.

Dr. J. thought to ask me if I wanted the part of the examination bed where a person's head goes to be raised up, so that one end of the bed was at ang angle.  I thought about it, and said yes, that it might be helpful.  I didn't lean my whole body against it, but resting my arm on it at times felt good - it meant I could change positions a bit, and having part of the bed higher made me feel more grounded. 

Dr. J. asked me if I wanted to know what she was going to do before she did it, and I said I did.  She did, in fact, do a really good job of telling me what would happen, and this made it easier on me because there were no major surprises.

The whole procedure took less time than I was expecting, which was nice, and then Dr. J. and her assistant did a good job of explaining the after care.  I repeated much of what they said to make sure I understood, and they patiently answered my questions.  They also gave me the instructions in written form, but having the verbal explanation was much easier for me.

I left the office relieved that for once, a medical visit had actually been very manageable, thanks in large part to a doctor who took some extra time.  It wasn't really a huge amount of time - though I know doctors are on the clock these days - but it was enough to make a difference for me.  Dr. J. was considerate and compassionate, but still managed to be efficient and skillful, and for that I was grateful.

Vestibular disorders -
Functional vision disorders - (College of Vision Development)

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