September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

Archive for October 2015

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

By | Published Wednesday, October 28, 2015

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.


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

By | Published Tuesday, October 20, 2015

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...

By | Published Tuesday, October 13, 2015

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 - www.covd.org.
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..... http://www.covd.org/?page=Adults
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 - www.vestibular.org - 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

By | Published Wednesday, October 7, 2015

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 Dictionary.com, 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 www.vestibular.org
For functional vision disorders go to www.covd.org



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

By | Published Thursday, October 1, 2015

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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