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January 6th, 2019 neurological change - it IS possible

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

Archive for 2016

June 4th 2016 About cognitive processing, and mental energy...

Why is cognitive processing difficult when you have a vestibular or vision disorder, or a combo of the two?  The short answer is that I (or anyone with one or both of these disorders) am not doing certain things as automatically as I should be.   Neural fatigue is a factor in  large part because I'm using up more energy to do some things than I should be. 

There's a ton of info that your brain processes all the time.  Some of it you're aware of: thinking about a problem, trying to explain something to someone, listening to and understanding directions.   But there's processing that happens that many people are not aware of:  Where am I in space?  How far is it from here (where I'm standing) to there?  What image do I need to have in my mind when I think about this or that? 

The "where am I in space?" is a big question that actually involves a lot of pieces: Am I sitting or standing? Am I moving a part of my body? Is there hand/eye coordination involved? Am I moving my eyes independently of my head, or is my head moving as well?  If my head is moving, is it moving from side to side, or up and down?  Is my eye gaze switching from close up to far away and then back again?

I don't exactly think consciously about all of these things, all the time.  However, I do think about at least some of these things, and that takes energy.  Because I'm using more energy to process various more basic info, I have less energy sometimes for other more complex processing.  Or I get tired more quickly, because I'm using up my energy more quickly, in order to process it all.  When I have a conversation with someone, part of my brain is, for example, figuring out spatial stuff. 

In terms of my basement project this summer, I'm using mental energy to figure out a lot of new stuff; how to pack things away, where to put things, what I need to bring to the hotel to make it workable for me, to name a few.  I always have things to think about, but there's more right now than is typical, and all the pieces really add up.  I have to work harder with all of this new info.

A major goal with the brain retraining therapies I do is for the processing of all this info to become more automatic, more the way it used to be for me before I got sick.  There has been improvement since I began, but I've definitely still got work to do.  So that when I'm having, as I mentioned, a conversation with someone, all I have to do is concentrate on the conversation, and nothing else.  Or thinking about a big new project doesn't feel quite as overwhelming.

The other goal of therapy, as I see it, is for my brain to do various tasks automatically without so much effort.  This would mean that taking a walk, being in new surroundings (not just a hotel, but any social setting I'm not familiar with), or any number of multitasking activities could be done more easily.  My brain wouldn't have to put so much effort into all the pieces.  This would mean less neural fatigue.  I wouldn't feel like processing more info was more effort than I could muster.


Writing this down felt like a challenging mental exercise, but I felt it was a good opportunity to try to explain a little bit about the cognitive processing issue.  It's a big deal for anyone with the kinds of invisible disorders I have, and I'm pretty sure it's hard for people to understand.  And what's perhaps MOST important is to believe anyone who is dealing with these issues, that they are not being lazy, or stupid.  We all are working harder than we should have to, whether it's obvious to the casual observer, or not.  A little understanding and empathy can go a long way.

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August 3rd 2016 Priorities, goals; what REALLY is important to me now...

When I get up in the morning, part of my routine is to go into Cara's bedroom, and open her curtains and blinds.  Often, in the summer, she's not awake yet, but I do it anyway.  She expects it.  These days I think about all the days ahead when that won't be necessary, because she won't be here, to have closed them the night before.  It's amazing to me how fleeting time can feel.
I looked at the calendar the other day, and thought "wow, it's August already!", and then yes, I thought again about Cara leaving for college in a few weeks, and her sister leaving only a few days later.  I'm caught between "Oh my goodness!", and thinking "yes, and the days will keep going, and eventually they'll be home for a holiday or a break...  It's transition time...  that's life".  Time passing can be strange - psychological time and REAL time can get funky.

All this leads me to think about exactly how I spend my time, which in turn leads me to think about my priorities.  How I use my energy, as opposed to purely using my time.  I remember the first time I saw Dr. Margolis (my Developmental Optometrist who supervises my vision therapy), I told him that I wanted to drive again.  Driving is a very complex activity when it comes to vestibular and vision disorders.  Driving is much lower on my list now.  Yes, it's a pain to make arrangements, but I've gotten used to it.  As time has passed, what has become MUCH more important to me is to be able to actually DO something once I get somewhere.  THAT is something worth working on.

Going someplace - say, to a social event - is a big deal for me.  I struggle with my social life.  I don't say that asking for pity, but rather because it's a reality.  I know I'm not the only one who has this struggle, but it's still mine, and has no easy answers.  In addition to social life, what other large goals do I have?  I remember a year ago, when Leena went off the college, I really wanted to make things happen, and tried too hard, too fast to get on the path to teaching private flute lessons again.  I ended up setting myself back, needing to regroup, recover, figure things out.  I don't want that to happen again.  So I'm thinking about what I've learned, and where I go from here. 

I've confirmed that having a predictable home environment - or at least relatively predictable - is really important in order for me to be able to function.  I've written about the importance of routines, and of having a stable physical space at home.  This summer I learned how much energy it takes away from being able to do other things, to be able to THINK clearly, if I have to work hard in my own home.  Challenges are good, but only doable when there is, to pardon the pun, balance.  When everything turns into a challenge, I become overwhelmed and overloaded.  So what does all this mean for me? 

I'm approaching the concept of goals a bit differently this year.  I want my larger goals to flow a bit more naturally, to kind of see where things go.  I think it's fair to say that my disorders have made me winnow down to what is really important to me.  I said earlier in this post that I think carefully about how I use my energy.  This isn't just for big things, like being able to do an outing.  It's about how I spend my time on the computer, since that's a demanding visual activity.  When I ask myself "what do I want?  what do I need?", here's what I've come up with: 

1) Being productive - it's really important for me to feel like I'm contributing.  I have to be creative about this, but two things that come to mind are writing my blog, and being an Ambassador for the Vestibular Disorders Assn. 

2) Keeping my mind busy.  It's REALLY important to have things to think about, particularly about things in the world around me.  Rumination about my own circumstances can go negative, and that does me no good.

3) Making progress. I have to keep up my motivation to do my home therapy not just to feel functional, but to try to move forward, regardless of how slowly.  I want, and need, to take my life one day at a time, but  making progress means that big, long term goals like teaching flute are still a possibility.  So yup, I need to find balance between here and now, and progress.

4) Staying connected to others.  This is HUGE.  Doing what I can to interact with others on FB on a daily basis makes a difference, makes me feel less isolated. Going to an occasional social event if/when possible, and talking on the phone with someone when possible are also valuable.  None of this is easy for me, but it's incredibly important. 


All of this makes me feel like I have a life, that I am not just my invisible disorders.  None of us are only our invisible disorders.  

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September 16th 2016 Being part of working for positive change...

I took a look at what I've posted over the last week or so, and thought about discussions within the petition threads, some of which I've listened to (listening to everything is too much - 300 comments!).  I also find myself thinking about what it takes to motivate people to take action, to feel that their voices are heard. 

Figuring out how to reach people, to motivate others is not easy.  Sometimes self motivation can be pretty tough.  I like to take some kind of action, to feel like there's something I can DO about a problem.  I know that some people just get discouraged, which I do as well at times.  For me, the answer to discouragement and apathy is twofold. 

I think about all the stories people have shared with me over the last two years that I've been an Ambassador for VEDA.  Becoming an Ambassador meant that my blog pieces were posted on the VEDA Facebook page, so I was able to reach a wider audience. Everyone's story is different, but there are so many who need help; a diagnosis, and treatment, or at least info so they know how to manage, and have a life.  Being one more voice trying to help is a positive.

I've also been able to connect with some like minded people - particularly those with whom I'm trying to spread the word about the WHO petition - and these people are DETERMINED.  Determined not to let depression, life changes, loss, etc. keep them down.  Determined to get the message out that we need change in the medical community. 

Being a part of all of this helps me, which is obviously good.  Taking action feels much better than just knowing that problems exist.

On that note, I ask again - if you haven't signed the petition, please do it!  We're up to 1180 signatures :-)  AND please share it - on social media, via e-mail, whatever.  If you've already shared it, consider sharing it again - perhaps someone who didn't see it the first time will see it this time.

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


And I ask you again to support the Vestibular Disorders Association.  If you can support VEDA, by chipping in, that's great.  Follow them on Facebook and share their posts to help inform people.  Become a part of a community that supports those of us living with these invisible disorders... Thank You!



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September 30th 2016 Brain energy; a precious resource...

I commented to my Vision Therapist, Ann, recently about how there's so much to work on in VT, so many pieces.  She acknowledged this, but said that yes, I was correct, that a lot of the pieces are connected.  She also said "you understand now how complex vision is, and how it impacts everything."  Not the least of which is cognitive processing, comprehension of info.  I've had similar conversations with my Feldenkrais therapist, my OT Joyce.

My friend Margaret wrote recently that she had about six partly written blog posts, and wanted to finish one (I can relate to that).  My friend David has told me that writing is difficult for him (he does videos).  I know many writers get "writer's block," but what I'm talking about isn't "I have nothing to say."  It's about organizing the words.  Sometimes I feel like I want to write, but gathering my thoughts, pulling everything together into something coherent just isn't there.

This has to do with what I just mentioned, cognitive processing, which is a big deal.  I wrote a piece about cognitive processing back in June which really hit a nerve.  The other day, I decided to actually look up a couple of definitions.  

Here's one for cognitive:
adjective
1.of or relating to cognition; concerned with the act or process of knowing, perceiving, etc.: cognitive development; cognitive functioning.
2.of or relating to the mental processes of perception, memory, judgment, and reasoning, as contrasted with emotional and volitional processes.

And now here's one for "cognition" -
"Cognition is the process of acquiring knowledge through our thoughts, experiences, and senses."

Here's my take away having thought about these.  If you are able to think clearly, all your senses are available to you, and you're not using more mental energy than is, well, normal for various balance related tasks, this thing called cognitive processing is much easier.  Learning, reasoning, etc. isn't compromised.  Multi tasking doesn't use up your resources.  Depending on what I'm doing; i.e. how my day is going, how rested I am, If I'm going out (preferably in the a.m., no more than three days in a row) my resources get used up more, or less, quickly.  I don't have the stamina that I'd have if I wasn't existing in my "new normal," but that's not an appropriate yardstick by which to measure myself.

With everything else I need energy for, using it up to remember the same thing six times in a row isn't happening.  My memory in and of itself isn't really that bad, but SEEMS like it sometimes.  It takes extra energy to do certain kinds of multi tasking activities that many don't think about, so I have to be careful how I use my processing resources, my thinking power. 

I use visual reminders; putting a pot on the stove re cooking, putting my cordless phone on the table to remember a necessary phone call.  I write myself notes.  Not long - often only a word or two about something.  My paper doesn't have lines - too much visual clutter - and is small.  Think of something a bit smaller than a 3" x 5" index card.  I never put too many different items - six is plenty - and once two or three items have been crossed out, I re-do my note.  My notes need to be neat.  I can read my own handwriting, but I don't like reading other people's handwriting.  All of this saves my brain energy.   

Using my computer takes a lot of resources, mental effort.  When I'm writing, or on Facebook, there's a lot of eye gaze switching.  This could be from the keyboard to the screen, or from one spot on the screen to another spot.  There's comprehension, whether I'm listening to something, or thinking about a response to something.  And there's my spatial sense of where I am in relation to everything else, what's around me.  I have to scroll, which is visual work.  There's a lot of hand/eye coordination, which requires multi-tasking, which is work.  Sometimes I close my eyes for a bit, but even so, computer use requires a lot of effort, of multi-tasking; processing a lot pretty much at the same time.

Sometimes I listen to what someone else has written, and can't help thinking "wow, I wish I could put together something like that!".  I can't write a piece with any complexity to it in a day.  Granted, I'm a perfectionist.  But I also simply get tired because I'm working so hard.  Then I remind myself that that writer isn't dealing with my challenges.  I realize that everyone has their troubles, but not all troubles impact that thing called cognitive processing the same way.  Still, it's hard never to think about what I'd be able to do - write, whatever - if I wasn't using so many of my resources on visual/vestibular issues. 


I work hard to make progress in my rehab - both Vision Therapy and Feldenkrais - which is a big reason why it's tiring.  In the end, I remind myself - again - that I need to give myself "A" for effort, and credit for what I CAN do, and not compare myself to others.  Margaret DID finally finish and post a good piece.  David put out a great video. We all need to choose and use our resources wisely, but still try to DO.  We each need to do what we can with our lives, whether it's writing, creating a video, or whatever.  

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December 21st, 2016 How can I make my time meaningful?

I wrote in my last piece about acceptance.  What does it mean for me to keep working at my rehab, but also work on accepting my situation?  Where do I focus my time and energy?

My home therapy/rehab IS a part of my daily life, but the question is how much I do each day.  I don't want my life to revolve around my rehab.  I know some people who do rehab take this approach, but it doesn't work for me.  I don't want to be constantly in recovery mode from therapy, and personally, I don't see the point if you're only focused on that next step.  There has to also be what's happening now.  I have to be living, not just thinking about where I might be able to go.  Of course, I also don't want to feel stuck.  There's always adjustments, because that's how brain retraining works. Rehab is not a straight line; there's a natural zig zag, and that's OK. 

So, what can I do? I don't want to feel like I'm moving through my days meaninglessly - who would?  I have the use of my arms and legs.  I can think.  I can see and hear. I can speak.  I'm not going to think about how any of those abilities are limited in some way by my disorders.  That said, when you have limitations, feeling like you're doing something because you need SOMETHING to do, or that you have nothing better to do sucks.  Taking my time, because I have ALL the time I could possibly need doesn't feel good.  So, again, what are the main things I can do with my time on a daily basis that give me some kind of fulfillment?  What puts joy, enrichment into my life?

Listening to audio books - I know I can listen to audio books, and that's a good thing.  Getting out of my own head, and life - call it escapism if you will - is a positive.  Books also keep my mind active, keep me thinking.  I'm a bit picky about what I listen to  - Ron would probably say too picky.  But I'm OK with my selectivity.  I want to think, but I don't want to be depressed.  I want sometimes to be entertained, but not mindlessly.  I like good writing.  Call me a snob, but I simply can't enjoy a book that's badly written.  I don't have to relate to the story, but I do want to feel personally drawn in.  I want to feel like I WANT to listen to the book, rather than that I'm just passing time. 

Internet - for me, this is using Facebook, listening to music, and some e-mail.  Though I'm trying to be selective about my FB usage, I definitely still see FB as an important resource for me.  I connect with friends, and get info.   I have to make sure there's a balance to my info in terms of keeping up with the news, but also looking at positive stuff, and connecting with people. Music is self-explanatory - gotta listen to music every day.  E-mail is mainly communicating with a handful of people with whom I don't communicate on FB.

Writing - OK, this is another computer activity, so I have to think about my pacing.  That said, I enjoy writing, and may mix in writing about other things - say an audio book, or a song - in addition to the snapshots of my life.  Talking about invisible disorders will always be important to me, but I also want to make sure I think about, and therefore possibly write about, subjects that aren't directly about me. 

My flute - I've written about the private flute lessons I used to give, and I still think about that as a long term goal.  But there are a lot of issues to deal with, and I want to enjoy what I do NOW, rather than solely focusing on something that may come eventually.  I USED to think that I wanted to wait until I was "camera ready" before making any more videos.  Flute teacher ready.  But I don't know when that's going to be, and I need to do something in the meantime.  I've always said that music is something to be shared, so, I want to see if I can manage our video camera.  I realized that until I try, I won't know for sure what challenges it presents to record myself.  How much help I'll need.  I have no idea how to download from our camera to my computer.  But I think that giving it a try, putting something out there, seeing what response I get, is worth a shot. 


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December 2nd 2016 Acceptance isn't giving up, or giving in...

To listen: copy & paste into Google Translate- this also translates to other languages - and click the "speaker" icon.

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I've been thinking about this piece for a while, and decided it was time to put it out there.  These thoughts, like a lot of things, are a work in progress.  This past Fall has brought changes, and frustration, and finally, contemplation. I've been adjusting to my daughters being in college.  I'm proud of them, but it's also meant thinking about my limitations, which is frustrating.  Anyone who knows me knows that I'm concerned about the general election we just had in the U.S.  However, there's a limit to what I can do, how involved I can be politically.  I'm also part of a group that worked on a WHO petition for vestibular patients, but again, there's a limit to how much I can participate in this project. 

I've talked about the importance of using Facebook, but my disorders impact my activity.  I'm very limited re my reading.   Really reading - meaning not copying and pasting text into Google Translate so I can also listen - is a big challenge.  It's one thing to see words - almost like an image, but quite another to actually process the meaning.  If I try to read too many headlines, or comments on FB, without copying and pasting into Google Translate, I get overloaded.  Combining the two systems - auditory and visual - makes comprehension easier, but copying and pasting headlines into GT is very impractical.  Re comments, or articles for that matter, if I copy and paste too much into GT, there's too much eye gaze switching, too much convergence on small targets, and I get overloaded. 

Sensory overload doesn't feel good, and if I don't pay attention, can lead to migraine-like symptoms.  On the plus side, I usually can tell when I'm heading towards overload.  So, I have to back off.  I have to pace myself.  Taking a few minutes here and there throughout my day is, I remind myself, better than feeling lousy and needing to chill out and do basically nothing for maybe an hour, while my system gets reorganized.  Yes, backing off means I feel better in terms of symptoms, but also somewhat less connected.  Then it's time to do writing that doesn't necessarily get published, or post on the Vestibular Support Group simply to get something off my chest.  I remind myself that I'm grateful for what I AM able to do online, and then find a good audio book that gets me out of my own head, and life.


All of this also means I've been thinking about what it means to accept my situation, without feeling like I'm giving up.  I need to continue to communicate with my therapists - my OT and VT - so they understand exactly what my struggles are, and can work with me.  But I also think I need to sit back and say "OK, this is my life, these disorders are part of me.".  I have a migraine condition that I mainly experience as light and sound sensitivity.  I have a vision disorder that impacts my life, realistically, in myriad ways.  I don't think they define who I am, but I DO think accepting that I have these disorders, rather than fighting that concept, is actually healthier for me. 

Acceptance won't come all of a sudden, and it doesn't mean I'll never feel angry, or sad, or whatever.  This process is far from linear.  But acceptance can, I believe, allow me to find a sense of peace about my situation.  Acceptance doesn't mean I'm going to stop putting effort into my rehab.  But it DOES mean it's time for me to say "that's right, you can't do (fill-in-the-blank)... this happened....".  The whys and wherefores don't really matter anymore.  Thinking about whether or not I'm "too young" for something like this is irrelevant, and I know I'm not the youngest person to be dealing with these kinds of disorders.  Thinking that someone else with a different disorder somehow is better off, has it easier than me - feeling jealous of others, what they can do - is normal and understandable, I know, but not helpful for me in the long run.  What matters is to pace myself, take care of myself, and recognize the value of what I CAN do, the person I am, even WITH my disorders. 



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November 4th 2016 My support system...

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

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As I said in my last post, it's National Caregivers Month.  I don't, thankfully, need "caregivers".  Fortunately, I am still able to care for myself in fundamental ways.  But I DO have a support system that is really important to me.

I know that Ron (my husband) and I, given our "druthers" wouldn't choose my disorders.  But it's five years out now, and we are managing.  He seldom complains, whether he always "gets it" or not.  In the helping department, this probably isn't a complete list, but he drives me to the vast majority of places I need to go, runs errands, and schleps laundry up and down stairs (it's not the weight, but rather the balancing act).  Last but not least, Ron gives me a shoulder to cry on when needed.  I'm very grateful to have him in my life.

My daughters, college students who no longer live at home full time, were here in the beginning, which was very hard.  I know it was - and still is at times - really difficult to have a mom with significant disabilities.  But I think they know I do my best, and they also seldom complain.   I listen to them, help in ways that I can, and try to share experiences with them when possible.  They each help out and do what I ask, most of the time, when they are home.  They are becoming truly good human beings, and I'm proud of them.

My parents (and Ron) are the only family members, to my knowledge, who read my blog posts.  My mom and dad are always in my corner, rooting for me.  Concerned but also trying to simply give support.  That means a lot to me.  There are, to be honest, some family members who have drifted as time has gone by.  My parents also give much appreciated financial help.

I'm very grateful for my friends.  Most of my friends are online, and the majority of my social contact is online.  There are a handful of very special people whom I've never met in person - and possibly never will - but whose friendship I value tremendously.

Of course, there's my OT Joyce and VT Ann, who are both skilled, caring individuals determined to keep helping me.  Ann actually reads my blog posts, which helps her to understand my life outside of VT.  Dr. Margolis, my Developmental Optometrist, is one of the best doctors I know.

The Vestibular Disorders Association is not a single person, but a wonderful resource and I'm grateful they exist, to help educate and spread the word about these invisible disorders.

Thank you to everyone who is part of my support system. 

If you are struggling, please reach out!  If you know someone who is having a really rough time, please encourage them to reach out!  NO one has to get through this alone.

Here's a link to VEDA - www.vestibular.org

and here's a link to the National Suicide Hotline - 



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November 1st 2016 It's your turn...

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

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I've tried to share about myself in the hopes that people will have some understanding of my invisible disorders.  I hope my writing is informative, honest, and hopeful - that is always my intent.  I plan to keep sharing snapshots of my world, but I'd like to cast a broader net.

To that end, to everyone who has read my pieces, it's your turn to speak out - I'd like to hear from you.  Tell me about a typical day, a success, or something that's a particular challenge.  Whatever you share doesn't need to be long, and if you don't follow me on FB (though I hope you do :-) ), you can comment on my blog site.  I always check for comments, and then you'd need to check back on the site for my reply.  You can also tell me you'd like to talk to me, to figure out what you want to share.  You can message me on FB - for those of you seeing my writing for the first time, my FB page has the same name as my blog site, Visible Person, Invisible Problem.   

I'd like to incorporate my readers' stories into future blog pieces.  I won't surprise anyone; we'll communicate, and I'll make sure I have your permission.  I may do editing, but I want to be sure I'm sharing what you want me to say.  I'll need to see what works best for me, and the person whose story I'm sharing.  If I get deluged, I won't share everything at once - I'll have to see what happens.  However, I'd really like to do this because I think the more stories we share, the more we can support each other AND raise awareness.  Supporting each other is important, but speaking out and helping people to gain a better understanding of vestibular/vision disorders is also really important.

Finally, please share stories about caregivers - family members, friends, medical professionals - anyone who is part of your support system.  November is National Caregiver Month, so I'm hoping to share some stories about the people who help you cope.


Thank you - I look forward to hearing from you all!

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

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

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

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

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

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

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

Clarification:

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


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


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September 12th 2016 It's Balance Awareness Week!

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

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

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

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


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September 10th 2016 Nearly 900 and counting!

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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


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

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

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


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

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

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

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

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

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



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

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

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

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

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


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September 2nd 2016 Balance Awareness Week is coming!

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

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

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

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

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


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August 26th 2016 Move through the anger, to figure things out, and DO....

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

Kids are "supposed to" move on.  Kids moving on is an experience that resonates with so many parents.  But when people say it's supposed to happen, I often think "*I* wasn't 'supposed to' get sick, but I did."  I don't walk around all the time feeling angry about getting sick; I think that spending a lot of time thinking about what my life was "supposed to" be like as my daughters grow up is pointless.  Focusing all the time on anger isn't healthy, and would be a waste of my precious energy.  But ignoring my anger completely wouldn't be healthy either.

I DO get angry sometimes.  Angry that I got sick - a kind of sick that can be managed, but is chronic.  Angry that for various reasons, I didn't get diagnosed and treated for my vision disorder until 1 1/2 years after I'd gotten sick.  Angry that because of my invisible (yup, I often look totally fine) disorders, I have significant limitations.  Some would use the word "disabled."  People often prefer to use words like "challenged," but sometimes the word "challenged" isn't how I feel.

There are times when people jump in with well meaning advice, which either doesn't work for me, or I'm simply not ready to hear.  I want to have a sense of humor about my situation; I know laughter can go a long, long way.  I want to have this transition figured out.  I want to have all the answers, and if *I* don't, then my therapists should.  I'd love it if there was a book out there titled "Coping with normal life changes while living with vestibular and vision disorders," but it doesn't exist.  

Info about dealing with kids moving on never takes into account special circumstances - that would be too complicated.  Each person's life, certainly with these kinds of invisible disorders, is too individual; there's no blueprint or manual for my experience.  So I have to write my own manual, as I live it.  I knew this transition was coming, and yes, I've given it thought.  I've talked about it with my psychologist.  My problem is that coming up with answers is very - well - challenging. I know I have to experiment. 

Once I've given my anger its' due, then I think "OK, I DO need to figure this out, so what can I do?".  In a previous piece I wrote about what is important to me now, in more general terms.  Now thinking more specifically, I end up thinking about social stuff, reading, and music. 

Reading - I realized once I had trouble reading - which involves a variety of skills - how many words swirl around us every day, in this incredibly visual world.  I've made improvement, but I want more.  There are many pieces to reading.  Besides home therapy, I can take out and work with children's books from when my daughters were young. 

Social stuff - I need to stay connected to friends, not just online (primarily through FB), but also in person via our congregation. I didn't have that this summer, and I missed it. 

Music - of course, there's music.  Always music.  Ron needs to get our electronic piano plugged in so I can experiment with that.  I know I've gotten better at musical "doodling" on my flute, but I want to play for longer, and I want to play a page of sheet music.  I don't think that's beyond my grasp, if I'm prepared to put in the effort, and keep trying, keep exploring.  

I admire so many of the Olympians.  I believe that I - and anyone living with invisible disorders, whether you're doing rehab or not - can learn from them.   Olympic athletes have tremendous talent, but they ALSO work incredibly hard, and don't allow setbacks to completely derail them. 


If I can feel like I'm making progress 75% of the time, I'm good.  I'm going to have bad stretches.  I'm going to have to revisit stuff, have to try again to come at something from a slightly different angle to see what works.  Sometimes in a VT or FT session, Ann or Joyce has to dial something back a bit, come at something a bit differently.  I'll have days when I'm super frustrated, or sad or angry, and that's OK.  I can't let the bad days keep me down, keep me from exploring and trying.  Just as I always tell my daughters, I've got to take it one day, one step at a time.  Worrying about what's "supposed to" happen for me a month from now, or whatever future date I pick, won't do me any good.  I need to figure things out, bit by bit, and then DO.

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August 13th 2016 Rehab isn't static....

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

According to the calendar, summer's not over, but with my daughters off to college soon, it feels like summer is rapidly coming to a close.  So I thought about what I did this summer.  Though I'll admit I don't want to do it again anytime soon, and I needed extra help from my Feldenkrais Practitioner Joyce, I managed a stay of over a week at a hotel.   Once home again, I went to a total of three stores - that's a LOT for me - with my daughters.  I spent some time at the Chicago Botanic Gardens with Ron and the girls, and last but not least, I've dealt with house construction projects (unfortunately not quite done).  I took care of myself, and managed to do all of this without having a setback. 

My stay at the hotel, and the really intense home project this summer were too challenging.  I felt overloaded, but my take away is that if I really need to do something REALLY hard, I'll find a way to do it.  I don't like feeling overwhelmed and overloaded, but taking on new challenges can be good.  It's a question of cost vs. benefit.  I did not go to the Ravinia Festival (a large, outdoor concert venue) this summer.  After several attempts over the last few years, I decided it's really hard, and the benefit isn't worth the cost.  The Gardens work well for me.  Challenging but worth it.  That's how I want to approach getting back into my Vision Therapy at home, and tweaking my Feldenkrais home therapy.  Challenge that's worth the pay off.

I didn't do nearly as much VT this summer as I had been doing.  VT, though very helpful, is a strain on my system.  It also takes cognitive processing resources I just didn't always have.  I was encouraged though, that when I DID do a VT session, I hadn't lost ground - I was able to do difficult stuff.  Which makes me think about the fact that if you want to make progress in any kind of rehab, you have to challenge yourself.  If you get completely comfortable with where you are, you won't make progress. On the other hand, if you push too hard, or too fast (or both), you can overload - your brain can't absorb the new so that doesn't work.


The trick is to find what some refer to as the "sweet spot" - like Goldilocks finding the chair, cereal, whatever, that's "just right."  Easier said than done.  It's not really a "spot," and I think it shifts and changes.  It's a gradual - sometimes more, sometimes less - incline. It's about finding the correct titration of, and mix of exercises.  It's nice when doing an exercise isn't too difficult, but a certain level of difficulty is necessary.  I need to always be open to changes in my therapies.

Joyce always says "if you're bored, if you're not noticing anything, you're not learning...".  Dr. Margolis, who supervises Ann (VT), always says that rather than doing one big chunk, it's better to do a few minutes at different times during the day.   So for me, I need to listen to my body so I know when to stop vs. when to push just a little bit further.  And how many bits I feel up to that day.  I need to communicate with Joyce and Ann about all of this. 

For me, doing rehab means making myself temporarily feel bad - maybe feeling off-balance, maybe dizzy, a headache. I don't want to feel bad for an hour, but needing a few minutes to recover is OK.  I don't like it, but that's an acceptable time limit.  Of course, it's also a matter of how intense the reaction is.  Falling down would not be OK.  Feeling so ill that I can't continue, and need to lie down right away is also not OK.  But needing to sit with no light or noise for a little while IS OK. 

I typically need a few minutes at the end of my VT sessions - even if I've paced myself during the session - to sit quietly before I leave.  The same is true for my Feldenkrais.  One big difference between my FT and VT is that VT always pushes me.  My FT sometimes pushes me, and sometimes is more to ground me, get me back to where I need and want to be after having been VERY challenged.  It depends on what's been going on, and what I've been doing.

Bottom line: rehab is not static.  Rehab is as individual as the person doing it, and needs to be reviewed and changed whenever you - or in this case *I* - get too comfortable for too long.  That makes me uncomfortable; I am not by nature an adventurous person, and this means exploring a bit, trying something new.  Something that may feel a bit scary to do because of my invisible disorders. So I have to trust my therapists.  I'm very fortunate to work with really good people, and I know I need to do this, to let things not be static, in order to make progress. 


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