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October 24th, 2018 My timeline of progress

I decided to do a timeline - an interesting cognitive exercise, as well as visual - Early Sept., 2011 - wake up to terrible VERTIGO ...

Archive for September 2015

September 27th 2015 Pacing - it's about management but also moving forward

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

I've used the word "pacing" in my writing, and in conversation with people, but I'm not sure how well people understand what I mean by that.  I like the word "pacing".  Pacing literally has to do with "the rate of movement, or activity";  that's actually what it says on Dictionary.com, although there are a number of definitions.  To me what this definition means is that pacing is about timing, about how the pieces of my days fit together.  It's become a really basic management/coping skill for me.

How I pace myself depends on a number of factors.  Getting enough rest is vital - sleep for me is like medicine.  How I pace myself is about which activities I mix with what other activities.  It's about how long I do any one thing before I do something else, which depends on what the activities are.  If I'm on the computer, what am I doing?  How visually challenging is it?  What is the cognitive processing involved?  It usually ends up being a mixture, and I have to have some self-awareness so I know when to take a break.  Some household chores are more spatially challenging than others.  I also pace my therapy days differently, especially the first couple of hours after my sessions.  Figuring out pacing would be different for someone else, not just because each person's activities vary, but because we don't all have identical problems or bodies - and everyone's sensory system is different. 

My vision disorder factors into what I do at least as much as my MAV does - I really can't separate the visual from the vestibular.  On a good visual stamina day, I may be able to do a bit more on the computer, though I still need to take breaks.  I may try to read a little bit.  I'm talking about sentences here, not full pages - though it also depends on the format - lengthy sentences on a standard piece of paper are harder than short sentences.  The level of challenge also depends on the font size and style, the contrast of the paper vs. the print itself, and the ideas or content conveyed.  Another possible activity on a good day is that I might read some sheet music when I play my flute. 

When I take breaks, particularly from visually challenging tasks, I try to do tasks that involve much more gross motor skills, so that I'm moving my body and the visual experience is much different.  Sometimes I may just sit for a few minutes, and pay attention to my breathing, or if I walk around, I'll notice how I'm moving.  If something doesn't feel good or quite right, I may try to focus on something else.  Focusing on or noticing what doesn't feel good may initially be a good idea, so that I can change or adjust something, but after a point I find it isn't helpful.  Rather than becoming sort of hyper focused on what doesn't feel good, I want to do what I can to help myself in the moment and then move on.

When I think about pacing, I take into consideration if I'll be going out, which I've been trying to do a bit more of lately, and if so what the outing involves.  Am I going someplace familiar? Will there be a lot of people, and if so will I know them?  What can I anticipate in terms of cognitive processing?  What time of day will I be out?  Do I need to make arrangements for food?  How much travel time by car will there be?  Once there, will I stay put, or move around?  These aren't new questions for me, and there are often other questions or issues in the mix.  Every situation is different, and I always consider the costs and benefits of pushing my boundaries. 

If an outing is really challenging I think about not just the day but the entire week.  When I attended a morning Rosh Hashanah (Jewish New Year) morning service, and then went out to family in Marengo (a one and a half hour car ride each way), which I hadn't done since getting sick, I stayed off the computer completely.  What time I had at home was very low key.  Sometimes  - like with Marengo - I make decisions really close to when an event will happen, though I will have done some planning and thinking leading up to the event.  I talked with Ron beforehand, and we agreed on the time we'd leave - which was based on when I needed to be home, and my daughters understood this as well.  I made my decision very close to when we left - it isn't always possible to make a decision very close to an event, but when it is, I take advantage of it.  I made management/coping decisions throughout the visit, but family members seemed truly appreciative of the effort I'd made, which made me feel good about having done it.

I don't like that I have to incorporate pacing into my day - just listening to what I've written reminds me that one reason I get tired is because of the mental energy that pacing and planning involves.  I'm used to having to do it, but it's frustrating to have to pace myself, to have to stop - sometimes it feels like a lot of bits and pieces - like all the bits and pieces I have to work on in rehab.  But in the end, pacing is helpful.  I don't like neurological fatigue, the sense that I'm just done, and can't process anything else. It's very different - to me anyway - from physical fatigue, and from mental fatigue as well.  If I pace myself, hopefully I avoid feeling really drained, like I need to shut down, and I can stop when I DO feel the "shut down" feeling creeping in. 

I want, as much as possible, to push my boundaries a bit at a time.  So as I pace myself, I also say "OK, what's the worst that can happen?" and I realized recently that I've already been down that worst road.  I DON'T want to go down that road again, but I'm telling myself I won't.  I have SO much more info, I understand my situation, I DO have coping skills.  Dr. Glad said to me recently that not only was it really good that I'm pushing out my boundaries, but that wanting to do something can be powerful - it's not magic, but it can be that extra motivator that helps you to make something really hard happen.  So I'm always looking for that sweet spot - pacing but also pushing my boundaries out a bit so I can move forward, without over-doing it and setting myself back too far.  I definitely don't always get it right - I think that would be impossible.  I know rehab isn't a straight line, and even when I have to recover, I remind myself that my brain has absorbed and learned something.


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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. - www.vestibular.org), 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 - www.covd.org.

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 - www.vestibular.org - 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 - www.covd.org - 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.
and
Vision
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 - www.vestibular.org
Functional vision disorders - www.covd.org (College of Vision Development)


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September 16th 2015 What 3 things do people need to know?

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

It has been officially recognized that this is Balance Awareness Week - so here are three important points.

Don't judge based on your own experience -

I recently heard a story in the news about someone diminishing someone else's experience with vertigo because their OWN experience was fairly mild.  So one of the three things I'd want someone to know is that there is a wide range of severity for vertigo and dizziness, and disequilibrium - if yours wasn't disabling, someone else's still can be.... don't base others' experiences solely on your own.

Don't presume that you know what it's like -

Unless you are SURE you "get" what someone is going through - and this applies to so many invisible disorders - don't presume that you do.  Though it's difficult not to be understood, it's more difficult when people think they get it, but they really don't.  Telling someone that you're sorry it's hard for them is always a good response, rather than that you understand, and then just listen to them. 

Many disorders really are invisible -

Finally, just because someone looks OK, doesn't mean that nothing is wrong.  Even when someone is having a bad day, many are good at putting on a good face - how many times have people said that Robin Williams always had a smile on his face?  My eyes do not look strange - neither my Convergence Insufficiency, nor my impaired VOR are visible to someone with whom I'm speaking. 

vestibular disorders - www.vestibular.org
functional vision disorders - www.covd.org



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September 15th 2015 Technology, and the power of the internet

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

I saw a quote once to the effect that technology makes life easier for many, but for those with disabilities, it makes things possible.  This is so true.  During Balance Awareness Week, I find myself thinking of the many, many invisible challenges people face - technology is about much more than electronic wheelchairs.

I can use my computer thanks to Dragon Naturally Speaking which allows me to control my mouse with my voice, and compose with my voice if I'm not up to using my hands.  I can listen to text by copying and pasting it into Google Translate and then clicking on the microphone icon.  I use this SO much - not just for news items, but for e-mail as well.  I use Illinois Talking Books (offered in other states as well) and Choice Magazine Listening to listen to all kinds of audio material.  I use my public library as well.  All of this is due to technology.

A lot of people diss over-use of smartphones, and talk about people being so plugged in that they miss live personal interactions.  There's no question that social media has its' downside.  Like a lot of things, it can be, and is misused by people.  People use social media - whether it be Twitter, Facebook, etc. - to post mean, horrible things both about others, and so that the victim sees it directly.  I don't for a minute condone ANY of that.  But that doesn't take away from the good, sometimes even wonderful things that can come of social media as well. 

I'm all for people getting out and having face-to-face interactions, but some people with invisible disorders are limited in terms of what they can do, and where they can go.  I think it's a bit more challenging to build friendships via private messaging; to have the same kind of depth as in person, but over time relationships can be built.  And of course, there can be the occasional phone call.  Friendships tend to go through changes anyway, as people go through changes. The obvious plus to connecting to people online is exactly that - connecting to people.  Whether it's rebuilding ties from childhood or teenagehood, or discovering new friends, either way it's good. 

Easy access to info can be really helpful, as long as you get it from a reliable source.  I heard of a wonderful book about Depression called Reasons to Stay Alive by Matt Haig (available through Amazon).  I heard of another book called The Brains Way of Healing by Norman Doidge.  And I've learned so much about my disorders from good info that people share online. These are only a few examples.... there's tons of good info (NOT just bad info) that reaches people quickly and easily.  I'm able to keep up to some degree on world news since I don't read newspapers or magazines.  And of course, I'm able to share my story through my blog site, and through the wonderful organization VEDA.  That's pretty powerful, and ALL positive!



Vestibular Disorders Assoc. - www.vestibular.org
College of Vision Development - www.covd.org

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September 11th 2015 Why do we need Balance Awareness Week?

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

I have a vestibular and vision disorder (Migraine Associated Vertigo and Convergence Insufficiency with impaired VOR respectively), neither of which are obvious when you look at me.  The VEDA Ambassador Board - which is comprised of non-medical people, and of which I am a member - needs to bring awareness to the public - and the medical community - that many people have balance problems.  A healthy sense of balance is something that a lot of people take for granted.  There are many people who have invisible disorders that affect that sense of balance, due to various symptoms; vertigo, dizziness, disequilibrium, or some combination of these.  Migraine Associated Vertigo (MAV) - which I have - and Meniere's Disease are just two that come to mind.  What causes vertigo, or dizziness, can be hard to diagnose because there are so many possible causes. 

Balance, as basic as it is, is a very complex task that involves a lot of pieces.  Many people don't know this, and don't think about it - they just do it.  People don't think about their vision, their brain, their sensory system, their vestibular system all working together.  People don't think about Traumatic Brain Injury (TBI) or strokes (in the young as well as older people) causing vertigo and disequilibrium.  A lot of people probably don't know what their vestibular system is - a part of the inner ear, or that vision is much more than literally seeing.  Or that the nerves in the bottoms of their feet provide information to their brains that is crucial for that sense of equilibrium. 

Benign Paroxysmal Positional Vertigo - BPPV - is considered the most common balance disorder, but I suspect that's simply because it's the easiest to diagnose, and often (unless it's recurring) relatively easy to treat.  Compare that to MAV, which is a fairly new official diagnosis, and therefore under-diagnosed, and can be much harder to treat.

So people like me want to speak up and draw attention to a whole host of invisible disorders.  Many people look fine, some don't - some look as if they're drunk or are using a cane.  There's a wide range of experiences among people who have disorders that affect their balance.  I want people who are suffering to know about, and to gain information about these disorders, so they can ask questions and hopefully get answers.  With diagnoses hopefully treatments are figured out - whether dietary changes, therapies, medication, and in some cases surgery - so people can find relief.  These invisible disorders can at the very least become more manageable, or greatly reduced, and in some cases, overcome.

But none of this happens without awareness, so Balance Awareness Week informs everyone. It's been wonderful to be connected to the VEDA Ambassadors to help spread the word about my invisible disorders, and I was honored when Cynthia Ryan, of VEDA, submitted my story to NORD for Mother's Day. I'm constantly reminded of how difficult it is for people to understand my situation, and how appreciative I am to be able to help raise awareness so more people, hopefully, can get answers.  Not knowing what's going on is SO much worse than getting a diagnosis.  Finding out you have any one of a number of invisible vestibular or vision disorders is hard, but it's the only way to have any idea of what to do, and feel some degree of control!


Last but not least, since I'm posting this on 9/11 - RIP to all those who died on this day 14 years ago - whether at the hands of the terrorists, or trying to save a life..... you are not forgotten....




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September 10th 2015 Balance Awareness Week is coming Sept. 14th

Four years ago, in September of 2011, I woke up sick in the middle of the night.  Now, four years later, I am participating for the second year in VEDA's Balance Awareness Week.  Please take a look at my Personal Campaign Page and share it - spreading the word about invisible disorders is what really matters to me.


For more about my story, please take a look at other articles on this blog site - http://visiblepersoninvisibleproblem.blogspot.com/- such as "About Me...", "When my challenges really began...", and "More of my story....".  In "More of my story..." I discuss my vision disorder - vision plays a key role in balance! 

Also please take a look at VEDA's site www.vestibular.org for more info on vestibular disorders, and the College of Vision Development -www.COVD.org  - for more about functional vision disorders, and Vision Therapy - it's not just for kids.


Thank you to all my readers - Look for more articles coming during BAW!

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September 4th 2015 Balance - it's about more than your inner ear

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

Whenever I write about vision, I hear from people grateful to find out about a missing piece of their puzzle, as it was for me.  Balance is a complex system, and when something is wrong, it can be hard to diagnose the source of the problem... that's why checking EVERYTHING - including vision - is so important. Vision is part of our sensory system - a really important part.  Vision impacts learning on multiple levels, and is a major piece of our system of balance. 

The standard eye chart that everyone who's ever had an eye exam has seen, was invented back in 1862 by an ophthalmologist named Snellen.  It was probably quite a break through at the time.  Now there is a chart called the LogMAR chart that some use - to me it looks pretty similar, albeit a bit fancier.  Both charts test for focal acuity - how well you can literally focus.  It's called 20/20 because the point is to see how well someone can focus at 20 feet. 

If you go to an optometrist or an ophthalmologist you will be tested for acuity and eye health - in other words, how well you focus, and if you have any eye diseases.  This is obviously important, but leaves out functional vision problems.  Optometrists and ophthalmologists, as I've said before, do not test for functional problems like Convergence Insufficiency (basically eye teaming), Strabismus (which causes double vision) or what is commonly known as a wandering eye (the eye isn't really wandering - the muscles aren't doing their job quite right). 

Currently, the only way to get a complete exam is to go to a specialist.  Most people have heard of Neural Ophthalmologists, but they really are surgery oriented. And of course, eye doctors do glasses, but what about Vision Therapy?  Surgery for Strabismus, from what I've heard, often ends up backfiring after a certain period of time, or not working in the first place, which is why I think Vision Therapy is a better option.  How many people are told about Developmental or Behavioral Optometrists? 

The formal name is Optometrist in Vision Development.  See this Wikipedia page about the international College of Vision Development -
which was established in 1971.  Here's a direct link to their site - http://www.covd.org/.  Doctors with training from this institution specialize in vision therapy and vision rehabilitation, and work to help people with functional vision problems.

Functional vision problems have a dramatic impact on peoples' lives because vision is so important - it's about processing and comprehending info - it's major brain work.  Imagine not being able to see the world in 3D;  seeing two sets of everything until your brain shuts down the messages from one eye because it's just too confusing, so you essentially end up with monocular vision.  Or not being able to comprehend what you read, or re-reading multiple times and skipping lines.  Imagine what it's like to try to comprehend info if you're concentrating on simply being able to read the actual word.  What would it be like if your world looked blurry? And keep in mind that these problems are NOT necessarily visible, easily seen.

And don't forget your vestibulo ocular reflex (VOR).  Note that this term actually includes "vestibular" for the inner ear, and "ocular" for vision.  What if your VOR gets affected (in my case, by a vestibular disorder)?  VOR - from Wikipedia - "This reflex functions to stabilize images on the retinas (in yoked vision) during head movement by producing eye movements in the direction opposite to head movement, thus preserving the image on the center of the visual field(s)."  All of this really happens to people.  Imagine having problems like this - and imagine how it can affect your balance.  Think about how it affects how a person interacts with the world.

It can all be fixed if it's detected, but the proper testing needs to be done.  If doctors don't test for functional problems - if they're only concerned with focal acuity and disease - these problems go undetected.  Kids end up thinking they're stupid, or get misdiagnosed with things like ADHD, sometimes low level - or high functioning depending on how it's phrased - autism.  Developmental Optometrists do all the testing that Ophthalmologists and Optometrists do.  In addition, they do complete testing for tracking, proper convergence, 3D vision and peripheral vision.  Both of my daughters now get checked by Dr. Margolis (my Developmental Optometrist), and my husband recently went to him as well.  This meant that for the first time in his life, my husband had a truly complete vision exam!

As my friend Lori said recently, when people have knee surgery, the doctor thinks nothing of sending them for physical therapy.  But that's not the case with vision therapy.  There seems to be an attitude in the medical community that problems should be fixed with medication and/or surgery. But functional vision problems don't get fixed with either of these - vision therapy - training or re-training the brain is what works.  I don't know why people are born with these problems, but sometimes the brain needs help to get the messages right.  Vision therapy is time and effort intensive, though much less so for kids than adults.  VT for a five or ten year old is different than for someone like myself, in my 50's.  It's still effective for me, but it's a much slower process.


Children who exhibit problems need to be checked for everything, not just autism or ADHD.  Adults suffering from vertigo and/or dizziness - symptoms that can result from many conditions -  need to have their vestibular system checked,  but ALSO need to have a complete vision work-up.  If vision is overlooked, it's like checking a broken ankle, but ignoring a possible knee or hip problem.   You can't walk properly if one gets fixed, but another problem is ignored. 

NOTE: If a vision problem is detected, more extensive testing in a particular area may be done.

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