July 4, 2019 Enjoyed my morning, ready to keep moving

I enjoyed walking around, looking at booths for our Annual Deerfield Family Days with Ron & both my daughters :-) I handled the ...

Archive for 2017

November 29th, 2017 - Medication

I thought I'd share info from my psychiatric visit... it was an emotional appointment for me, but a positive result...

Saw Dr. Mirsky today... his style is friendly but very efficient, kind of business-like - but he's not my psychotherapist...

Bottom line - micro-dosing Prozac... the oldest - 1987 - and still the best one out there for Anxiety/Depression, especially when there's concern re side-effects...

I'll start at 2.5 mg, then go up to 5 mg, then 7.5 and ultimately 10 mg... this is a low dose... Mirsky said the down side for me is concern re side effects with meds, but the positive is that he thinks I can get benefit from a low dose of a med...

I'll still for now take micro-dose of Melatonin because if I change something, he/I won't know what's going on re symptoms... he said I know you've had disappointments, but 
this is a process, and seemed confident that I could feel better...

Also wants me to talk to therapists (Joyce and Ann) re other ex. - cardio - that I could handle balance-wise... asked if I had a psychotherapist, and seemed clued in that everything is connected, which is good...

I go back in 5 wks....


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October 18th, 2017 Help for my mental health: medicine...

Getting sick in September 2011 was literally overnight, and life altering for me, and it also had - and continues to have - a major impact on my immediate family, particularly Ron...

I believe speaking about mental health problems is the best way to fight stigma... so I'm sharing that I feel anxiety and depression because of my vestibular migraine condition, and my vision disorder...

It can be draining, and exhausting... my frustrations, disappointments, etc. invade my thoughts, my sleep, sometimes disrupt my sleep... so I've decided - finally - to seek out a psychiatrist to help me find an anti-anxiety med or anti-depressant... I'm very sensitive to side effects, and sometimes ingredients can cause a migraine, so I'm worried about finding a med.... but it's worth a try, and I want to believe there's something out there that can help me...

I'm not going to stop my therapies, but I need more to help me deal with what happened to me... I want a med that will cushion - a little bit at least - the pain of loss, of sadness, and soften the edges of anxiety... I want things to be a little be easier... it's time... I'm ready.... so here's hoping I can find something with a psychiatrists' help...


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September 24th, 2017 This is my life; trying to find balance....

Hi... first of all, THANK YOU to everyone who's following me on my Visible Person, Invisible Problem FB page... if you're not following me there, please take a look....

here's what I know about this blog - I'm not going to think so hard about writing the Great American Blog... I'm just going to write... I'm not going to be a perfectionist - I realized that streak in me was rearing its little head... I'll talk about music, my rehab... I'll see what else ... no pressure, which is rather freeing...


I'm trying to find balance in my life in more ways than one, and not writing this blog at all feels out of balance for me, so here goes.... in bits and pieces....

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June 28th 2017 Summer Update...

Two months ago, I had a major setback... this was due to a number of factors, one of them being too much computer time... I continue my recovery, refocus my energies on my rehab, enjoy my daughters home for the summer from college, and rethink elements of my lifestyle... 

I remain committed to the issues of invisible disorders, but need to think about how I will use this space to write/share info about them, and my story... in the meantime, I invite you to follow me on FB at Visible Person, Invisible Problem for music vids, health related info and status updates... Thank you!!

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April 26th 2017 My life right now...

Focusing on things other than my disorders is helpful; I get enough reminders throughout my day of my disorders. I wrote about my big music goal, which is just that - a goal, not a guarantee.  In my day to day life, there's only so much I can do on any given day that moves me towards this goal.  In the meantime, there's this thing called my life.  My life right now.

I had a session with a potential new mental health therapist recently, and surprised myself at how emotional I got.  My tears flowed, talking about everything that's happened to me in recent years.  In part, I think I felt comfortable enough to share, but it also made me realize that I'm not done processing what happened to me.  How much my life has changed.  There is power in the spoken word, and though I'm used to telling people my diagnoses, I'm not in the habit of telling them what happened to me.  Giving voice to that in a safe place, is powerful, and hopefully will be healing.  I finished the session saying "I guess I'm trying to rebuild my life."  In truth, this is about more than music.  It's about social life, about DOING things, beyond the internet.

I don't, fortunately, suffer from migraines every day.  That's not, however, by accident.  It's because of how I live my life.  Avoiding my multiple food triggers, noisy places, bright lights, and pacing myself make a big difference.  This means my life has very distinct limitations.  I live with these limitations because I HATE migraines.  I cannot tolerate them.  Migraines are not regular headaches.  For me, they are a unique, debilitating kind of pain that makes it so that processing anything - thinking - becomes incredibly difficult. 

There are all kinds of visual issues for me as well, so I don't go to movies, and rarely go to restaurants.  Venues or events with a lot of people are challenging for me.  Ron (my husband) deals with all kinds of paper work tasks because of my vision disorder.  I am working hard in vision therapy, and have made progress.  I know that.  But this recovery of mine, in a sense of my self -  my life - is not an easy journey.

So, as I think about music, I also think about the overall picture of my life.  What I fill it with NOW.  With the exception of writing, my creative outlets are only a few minutes out of my day.  Meaningful, and important, yes.  Preferable to focusing on my disorders?  Definitely.  But social life, life beyond the internet, that's really the other significant piece I want.  I am very grateful for all the positives the internet offers me, and for technology like audio on Google Translate for listening, and Dragon Naturally Speaking for using my computer.  It is not, however, enough.  I need to be able to go out more. 

Social connections have lots of well-researched health benefits, but honestly I don't think the research is entirely necessary.  To me, it's obvious.  Going out can be really challenging; my system has to work much harder, especially in new surroundings.  Currently, I can't do more than one outing in a day, going out in the morning the day after an evening out isn't something I do unless I REALLY have to, and going out four days in a row (even if the outings are in the morning) is difficult.  I need to talk to Joyce and Ann about this, because MY thinking is that somehow building up stamina (difficult to do) is one of the keys to increasing my social activity.

My overall frustration with all of this is that none of it happens quickly.  It all takes effort.  Time.  Which means that in the meantime, I try to do my home therapy mindfully, in the present, so my brain learns.  My body, my self.  I go about my days, and remember what I wrote a while back, about appreciating good things, positive moments, even if small.  Like snuggling my cat or dog, hugging Ron.  Noticing the beautiful Spring flowers. Listening to beautiful music.  Our family belonging to a wonderful congregation, which is actually not a small thing. I've got to mindfully focus on the positive.



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April 23rd 2017 Part 1 - Daring to have a big goal...

I bounce around emotionally about the concept of making goals.  I don't want to look back and think to myself "well, that didn't work, did it?".  I don't want to fail.  I know failing because you didn't study enough, or whatever, is different than what I'm talking about, but it still doesn't feel good.  Not succeeding at something really important.  I don't want to find out that a goal turned out to be too difficult in some way, too challenging.  I want to believe that achieving a goal I set for myself is a matter of figuring out how to make something work, how to break something down so that I can work on it, make that thing happen.  That it's a matter of time, effort and creativity. 

But I don't always believe that.  Sometimes I feel like there's something lurking, waiting to surprise me in a bad way.  For me, this isn't totally strange or irrational - getting sick felt like a surprise, freaked me out.  Waking up to a spinning world.  Looking back, did I miss any signals?  I don't know for sure, but honestly I'm not convinced that I did.  To borrow Oprah's phrase, what I DO know for sure is that none of us can predict the future.  I don't have complete control. 

What I also know for sure is that I can't live my life waiting for that next bad thing to happen.  I understand a lot more medically than I used to.  I am a much better self-advocate than I used to be.  I also know that there are some things that I DO have control over, like my attitude, my effort.  I know that setting goals feels necessary.  I need something to work towards.  If I don't set goals, I feel like I'm giving in to these disorders of mine, and that feels bad.  If I set a goal and it doesn't work, I guess the questions would be not only "why?", but "did I learn anything?", and then "what comes next?". 

I've been thinking about all of this because I've been working on a piece about being able to read sheet music again, and asked myself why I was hesitant to finish it, to post it.  Music is important to me.  The loss of the role of music in my life - being in a band, playing duets with others, teaching flute lessons - is very painful.  If I try again to work towards a goal that puts me closer to rebuilding my life musically, and it doesn't work, I don't want to have to deal with that.  So I put it off. 

But in the end putting off trying is giving up.  Settling.  I don't want that.  I cannot deal with the pain of the loss of saying that what I have right now musically is what I'm going to be left with.  So, I have to try.  I have to dare to set myself a goal.  And maybe I have to make myself believe that I can make it happen.  If something DOES happen that makes that unlikely, I'll have to face it, I'll have to see what possibilities exist for me.  But I can't let go of the music dream yet.  It may sound like a cheesy cliche, but in avoiding the possibility of failure, I prevent the possibility of success. 
**see Part 2


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April 23rd 2017 Part 2 - My goal: playing sheet music...

So here I go with my goal: I want to play sheet music again.  For me, this is a simple, but complicated statement.  There's SO much wonderful music out there, and I really want to be able to PLAY it, bring some of it to life.  Sheet music is, however, a big challenge. 

All kinds of multi-tasking:
Comprehension which requires processing the musical notes as well as the rhythms, tracking, figure ground (notes on the staff).  There are also multiple physical elements; moving my fingers, controlling my breathing, holding my arms in the correct position, sitting or standing properly, over all body posture/position, and using my tongue and lips. 

Mentioning my tongue and lips may sound strange, but musicians who play wind instruments may use their tongues quite a bit.  Tonguing is how I produce staccato notes, or simply separate one note from another.    Flute playing involves an unnatural position, or posture.  In a way, I'm used to the less natural position playing my flute requires.  However, I want to avoid physical problems now, so I'm trying to make changes, to make it work, after 40 years!

All these elements involved in playing sheet music make it feel like a big challenge.  A year and a half ago, I tried going too fast, and got frustrated and discouraged.  But not trying at all gets me nowhere.  I need to revisit it, because eventually I want to conquer this goal, master it!  So, I need to break down, and piece together all those elements I've mentioned.  That's what Ann and Joyce often do; break movement, visual tasks, etc. down to manageable levels, and then build from there.  I can discuss with them what I figure out is or isn't working, and they can help me understand. 

I took out the John Denver songbook I purchased last year, and using my finger, tracked through the seemingly simple song For Baby, For Bobby.  It's always fascinating to me to see what a piece of music I've heard, looks like on paper.  I tend to use another system - whether my finger, or audio (my own voice) - to help with tracking, guidance.  Clearly, this needs to change in order for me to play my flute while reading sheet music. 

Right now it feels like there's a missing connection, a missing link between reading the sheet music, and playing my flute.  I can play my flute, whether freestyle, or on good days a short melody from memory.  I can now read through some simple sheet music.  And yes, I had to take a break, and get reorganized, but I did it. So I've made progress.  But putting the two together - playing AND sheet music - just doesn't work, yet.  I get brain jam, or off balance, or both.  Too much to process.

I think about other creative hand/eye activities I do now, and compare to my flute, to try to figure things out.  Puzzle out what I need to work on.

Writing requires my computer.  This means using the keyboard, switching my gaze from the keyboard to the screen (though I do touch type), looking at the screen which always has SOME movement (almost undetectable, but there), and of course thinking. 

Playing our piano keyboard is different from writing OR flute playing.  The position is more like writing.  Looking at the keyboard is a visual exercise of sorts - the stripes of the keyboard, and hand-eye coordination.  The keyboard is not nearly as well known to me as the keys of a flute, but doesn't feel like a total stranger.  Find Middle C and go from there.  Don't worry about sheet music; I never knew how to read Bass Clef, and I'm not interested in that now. I just want to make some music, and I'm finding I enjoy it.

I've done a couple drawings, using colored pencils on cheap drawing paper.  It fascinates me to see the different designs and colors I created. It's a good visual exercise, as different colors and shapes emerge on paper, AND a bit of an emotional outlet for a few minutes.  I've got to tackle sharpening the pencils (not every day), which is also visual; holding the pencil sharpener, putting the pencil in and turning it.

Getting back to my flute.  I think the key word when it comes to sheet music is "eventually."  Because of the complexity of the task, playing sheet music - as opposed to only reading through it, or playing my flute without using sheet music - is not something that I'll achieve in days or weeks.  Understanding all the pieces is important; I can't work towards this goal without that knowledge.  There's a positive side to having such a complex, big challenge. I believe that all the work involved in being able to PLAY sheet music will mean more than just that.  I will have made a great deal of progress, tied a lot of pieces together, when I've accomplished this goal.  For now, I need patience and persistence... patience and persistence.


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March 17th 2016 Find energy, feel joy...

I looked recently at my Dec. 16th, 2015 post about my flute rehab plan; I've been thinking about my music, and reviewing my situation.  I still believe that, eventually, I will be able once again to teach private flute lessons.  I FINALLY did a mini practice lesson with my daughter Cara.  Overall the mini lesson went well, and was a good learning experience for me.  The problem is that making progress with this goal is very gradual.  I also find myself thinking when I'm doing my VT and FT, "how can I make this feel less like work?". 


The answer lies in feeling energy and enjoyment, which got me thinking about cognitive re-directs and cognitive over-rides.  Cognitive over-rides are, I think, a bit more natural and less overtly conscious.  It means that you find yourself focusing on something else while you're doing something, but without necessarily saying "I'm going to think about something else."     It's more likely to happen if you let yourself relax, rather than getting hyper-focused on your task.  Cognitive over-rides help make a difficult task easier, because you are no longer THINKING so much about the difficulty of whatever you are trying to do.  For example, if you are taking a walk, and start noticing your surroundings - sunshine, pretty flowers, birds, etc. - the task of walking becomes easier.


A re-direct is more purposeful.  You intentionally direct your brain to something else, and it can get your thinking, your processing onto a higher level.  A re-direct during a VT exercise will, I think, take the pressure off a bit, make it feel less like work.  I've found when I talk about something with Ann while I do an exercise, it almost always allows me to do better.  I think the same can be true on my own  - I can hum a tune or let myself think about things while I work. 


I messaged my friend Glenn recently about the fact that if you're really into whatever you're doing, you also often have better mental energy.  Being excited about something makes you feel energetic.  Boredom is very bad for cognitive processing - your brain kind of shuts down, or gets sluggish.   I told him I had decided to get brand new music to play, music that I really enjoy, and WANT to play.  If I have new music I'm excited about, I think it  will help my rehab/brain re-training. 


I always used to say that my students needed to enjoy learning to play flute, because if music isn't enjoyable, what's the point?  I know music can also be moving and cathartic, but there really needs to be an element of joy.  I thought about the idea of sluggishness and boredom when I took out a piece of sheet music I've played before, and played one line.  New music would feel fresh, without the baggage of remembering when I'd played it in the past, which is bittersweet for me.


Ann and Joyce were both very enthusiastic about my new music idea. They both always say my face lights up when I talk about music. I'm going to buy a John Denver songbook.  Surprisingly, I never bought a songbook of his music before, so actually playing his music would be new for me.  If I can't find flute solo arrangements that work for me, given the level I'm looking for right now, I'll buy one to play the vocal line.  I know many of his songs, so comprehension won't be so complicated, and I'll be playing music I love.


There's also the matter of timing.  I wrote recently about how important routines are to me.  I still believe what I said, but when it comes to brain re-training, the last thing I want is for my brain to get sluggish out of boredom.  The very word "routine" sometimes conjures up images of boredom - that "here we go again" feeling.  I think there needs to be a balance between routines for some things, and doing something a bit unexpected so our brains pay attention. 


Finally, there's this thing called fun.  Long term goals with a plan are important, but I also need short term fun woven into my day.  Things that make me feel good.  Part of that can come from listening to music.  Feeling good can also come, for me, from letting bits of flute playing be a more natural part of my day.  I - like many musicians - always felt an element of work in my playing because I thought of it as practicing.  Now I want to let that go, and just let music be a way to express myself.  So I'll go back to playing my flute more than once a day, even if it's very short.  When I think of it, I'll play my flute.  Probably more in the morning, but I'll see what feels  good; I'm hoping to feel energized, so I might surprise myself.


Letting my mind wander when I'm doing my VT and FT, as long as I'm not wandering into worry, will help me on my journey.  Music I love will help me.  Music is my thing, but some people are into crafts, gardening, or whatever. I've said before, but it's worth repeating - find something that is joyful for you, and make it a part of your daily life - especially for the difficult days.


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March 22nd 2017 How I used to be, where I am now...

Looking back over the last five and a half years, I feel like my illness has gone in stages.  The first couple years were acute.  The first year in particular is mostly a blur with memories of doctor appointments, feeling bad, and high anxiety about "what the hell is WRONG with me?!". 

In May of 2012 I started Feldenkrais Therapy with my wonderful OT, Joyce (recommended by a friend) and life started to improve.  Then I got my MAV diagnosis in July of 2012, and in September began my migraine diet which I follow very closely.  Finally, in May of 2013 I got my CI diagnosis, and began Vision Therapy with my equally wonderful Vision Therapist Ann, supervised by Dr. Neil Margolis. 

Beyond the acute phase, there's no names or labels other than "chronic."  My second year of illness was still bad, and memories are blurry, but I started to feel hopeful.  My work with Joyce resulted in my working on walking, so that I could take daily walks.  Getting out of the house was incredible. 

During roughly the third and fourth years I worked for what I consider really  basic improvement.  I began to sleep less - wow, I actually was OUT of bed more than IN bed - to the point that I realized that if I was disciplined about my nap time, I slept somewhat better at night.

I've realized that I'm now in a lengthier phase that is blurry in its' own way.  I'm doing the slow, challenging work of trying to push forward to wherever I'm going to end up.  The blurriness comes from my not knowing where I'll end up.  I told Ron (my husband) recently that I try not to think too much about the future; there are too many question marks for me. 

So besides what I've already mentioned - walking and sleeping - where am I NOW?

I asked Joyce what has changed for me.  I also asked Ron.  My VT schedule has been less consistent lately, but I'm gonna take a guess about what Ann would say.  Here's their input, as well as some things I came up with.  I'm not going to say anything about how any of what I came up with is still limited in any way, or what "typical" stuff is not on the list; the point is to focus on the positive.

What Joyce said -
I can tolerate more - she doesn't have to be as delicate.  Movements can vary more now.  She reminded me that in the very beginning, I couldn't lie down, or basically be in any position other than sitting.  She also thinks I recover faster. 

What Ann would say -
I can do harder tasks in VT than before, like using prism glasses a bit.  I also can do some things more smoothly, or faster.  I tolerate noise during some activities.

What Ron said -
In the beginning, I couldn't take walks with him.  I couldn't go to my parents house - about 45 miles away.  I also can now go to cousins in Marengo, which is an hour and a half drive.  Going to Marengo is usually only once a year, but I can do it now.  He thinks I can do more on the computer, and listen to more audio... this is hard for me to say, but he may be right. 

What I came up with -

1) Challenging myself - this is something I've thought a great deal about.  Challenges can be large or small. 
Any time I have to multi-task - particularly unexpectedly.  For example, when I'm playing my flute, and Ron - or anyone - calls, and I have to stop, answer the phone, and have a conversation - even a short one.  Then give myself a minute, and go back to my flute.  Since so many tasks (i.e. emptying the dishwasher) involve a kind of multi-tasking most don't think about, this kind of multi-tasking - going from one completely different task to another - is a big deal for me.

A really big one: I finally did dental x-rays - years overdue.  Celebrating Passover (or any holiday) is big.

2) Writing myself notes - I was just looking at a post about brain fog, and thought about how notes help me.  They actually serve more than one purpose.  Notes help me remember things (especially if it's NOT routine), but ALSO are proof to me of what I actually get done.  For me, just writing the physical note is an accomplishment, because it's a visual exercise.  I'm also planning what tasks I want/need to accomplish.

Examples of items (special, non-routine tasks) on my notes:

- Phone calls - scheduling the exterminator, a doctor appointment, whatever.  Phone calls are a challenge for me. If I have to make ANY calls, I write them down, and getting those done is definitely an accomplishment.  Dialing, processing whatever info I need to, making a note about the call if necessary - lots of work!

- Sunday Comics - tracking, eye gaze switching, comprehension, hand eye coordination (turning the page)

- Local paper - same as above

- Watering plants - filling the watering can at the kitchen sink, walking with it, and watering different plants - lots of multi-tasking, and effort.

- Making a shopping list - going back and forth between where food is, and my computer where I edit my list... this is a large task for me.

3) My flute playing - though freestyle - has changed.  I've been listening more.  Sometimes my melodies have more rhythm, or I pay more attention to how the notes work together.  That's a higher level of processing, and I'm happy I noticed it.

4) The fact that I wrote a list of activities for VT, and use as a guide.  I never would have done this once upon a time; it would have overwhelmed me.

I look at this, and think about Jill Bolte Taylor, the woman who suffered a massive stroke, and took eight years to recover.  My situation is very different, but I think I've still got time.



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February 25th 2017 Cats, and me...

I've been thinking about cats and dogs lately.  Specifically watching my cat and dog.  I have no hope of being like a dog - so completely in the moment - but what about a cat?

Cats are in the moment as well.  Maisy - my cat - likes her night time snack of canned food; she waits for it, trots down the hall and happily eats.  At that moment, that's where her mind is.  Or she basks in a sunny spot, then licks a paw, spends some time chasing imaginary who-knows-what, and goes back to napping.  But she's also contemplative - she's a character, but also has her thoughtful, cat-like moments.  "Hmmm, should I jump on her lap for an ear/head rub?"  She needs to be in the mood for a good ear rub - which she LOVES - or has no interest whatsoever in attention.

So what about me? I am contemplative as well, but I'm definitely a "doer." 

Work - I haven't ruled out teaching (very part-time) flute lessons at some point.  But paid employment is not in my future, beyond that.

Social/political activist - To go just a bit political for a moment, I didn't vote for our current president - which was NOT simply due to partisan reasons - but I'm not going to go the social/political activist route.  No protests, marches, e-mailing, phone calling, attending Town Hall meetings - nope.  I need to leave that to my more able bodied friends.

Possible public speaking re health issues - perhaps someday, but there would be a lot of challenges for me, so definitely not now.

Music - I'd love to play with other musicians.  Hopefully someday, but realistically not any time soon.

Health activist - I write my blog - obviously - but wish I could do more.  I don't make videos (though hopefully will post another flute recording eventually), but rather rely on what's available on YT.  I post the WHO petition occasionally, which is something, but again wish I could do more.  I'm hoping to help VEDA with the Dizzy Dash project - we'll see how that goes.

So honestly, this leaves me frustrated.  And I think of two things -

Social - I'm a fairly social creature.  I like, and have always needed downtime, but I also need people time.  This is much trickier now than it used to be, due to my limitations.

Thinking time - yes, I need thinking time.  I like having time to think.  Even when I was healthy, I didn't like running around busy from one minute to the next.  It's important for me to have time to figure out what's difficult or challenging about participating on FB, or writing my blog posts, or  doing a household chore.  But thinking, and thinking some more stops being helpful. I have more than enough time now. 

I always try to problem solve, so...

Meditating - I said, I've been thinking about Maisy. That maybe I need to try to learn to, at least figuratively, bask in a sunny spot and NOT think.  Just exist, just be.  Since I'm NOT a cat, meditating might be the way to go.  I know there's a lot of research indicating the benefits of meditating.  I've been told that the key is to bring yourself back after your mind has wandered - that bringing back part, discipline of mindfulness - is what meditating is about.

Taking pleasure in small things, moments.  I'm not as good as I'd like to be at taking pleasure in really small stuff.  But maybe I need to get better at that.  And take my small moments of happiness, or at the very least feeling good, instead of how I wish things were. 

What I AM able to get done is good enough, for me.  I need to reconcile myself to not getting as much done.  Certainly not the way others - and I - USED to think about getting things done.  Adjust my expectations to recognize that what I've done during a day counts, for me.  I realized only recently that deep inside, I think I still measure myself by that "what did you get done today" yardstick.  This is really unfair to myself, given my vestibular and vision disorders. 

For me, being more like a cat - thoughtful, but also in the moment - isn't so easy, but I think I might be more at peace.



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February 8th 2017 Two things on my mind...

Thing Number One - in December I wrote about four activities that I can do that are meaningful - audio books, internet (FB and e-mail), writing, and music/flute.  These are not equal in time spent (music isn't a lot of time), and I can't over-do it on the computer.  So, I'm thinking, thinking, about what I can do that's not on the computer.  The "what I can do" is the tricky part.  It's ok to come up with something from which I need to take a break - that's a given.  So I'm looking around our house, and thinking.**

Thing Number Two - my last piece was about my Vision Therapy (VT), and how to progress.  One of the things I talked about was motivation; how to make home therapy meaningful, so that it doesn't feel so tedious.
I decided to come up with a list of activities that I could print out, and refer to - I'm thinking this will help me stay focused.

1) Using a young reader's book - I have, for example, some Henry and Mudge books that work well for this.

2) Letter squares - these are from VT.  There are different activities I can do with these, and this could actually be fun.

3) Using my iPad

4) Looking at sheet music

5) Using the piano keyboard - I've found that because of the "stripes" of the keys, and positioning, this functions as an exercise on multiple levels.

6) Playing my flute a bit more, various things I can try - spatial, visual - I have to remember this is good for me on multiple levels.

I may come up with some other stuff, but this is a decent start.  Not everything - obviously - is a new activity.  But it's about how I think about it. When I use my iPad, I can listen to audio books, so once I get past the log-in, etc. this is an activity that takes more time.  The other activities, for now, do not take more than a few minutes.  However, they all feel better than "doing exercises," which is, I realized, important with long-term rehab.  Everything is connected, builds on everything.  So I'm going to see how it works if I put in a little bit here, and a little bit there.  See how I can structure my rehab; the self discipline can be difficult at times. 

I'll still do regular, titrated exercises.  And I may have days when I can't do much that's on this list, but hopefully there will be at least ONE thing I can think of that I'll be up to doing.  I don't want to feel fragmented, which is a potential problem with too many little bits, so I'll have to see how to put this all together.  Hopefully at the end of each week, I can look back and say "yes, I did this," or "yup, I did that."  Each little bit counts.  The most important thing is for me to remember that all of this helps me move - slowly to be sure - forward.  Forward towards what is currently missing for me.  Can't get more important than that. Especially since moving forward ties in, I think, to Thing Number One.


**After posting this, I realized I could spend more time listening to music.  I don't have to actually WATCH every YT video, because I don't have to be facing the screen.  I also have a lot of John Denver podcasts (my FB friend Willie does a great job with these), and I'm not even missing any visuals if I don't look at my computer.  And of course, I also have my trusty iPod.  
Listening to music is a start; not overdoing it on my computer is a challenge, but it's important.



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February 1st 2017 Vision Therapy; how to progress...

I saw my Developmental Optometrist, Dr. Margolis, recently for what he calls Progress Reports.  He asked a lot of questions, and got a good sense of what was going on with me.  He is, I should add, a terrific doctor.  I wanted to share a few things that I got out of my consult.  Sometimes I think of my progress like a toddler learning to walk.  Stumbling sometimes, holding on when needed, but every little step matters.

Basic positive gains - Dr. M. said he thought I handled the actual exam better than in the past, which he thought was a positive, as do I.  I still needed breaks, but that's OK.  He also said my midline and body mapping were better. 

Motivation - I told him that home therapy can feel tedious, even though I completely understand how important it is to actually do.  We talked about ideas to help me feel motivated about my home therapy - make it feel more meaningful.  How to integrate it into my day, and said he'd talk with Ann (my VT) about this. 

Positions - Dr. M. and I talked about doing home therapy lying down - something Joyce (My OT who does Feldenkrais) has also talked about.  Lying down takes away the compensatory habits of sitting and standing.  I don't just mean conscious habits, but rather ingrained, neural muscular habits.   Lying down also means I'm not dealing with the element of balance/multi-tasking required for sitting or standing.  I'm thinking more about this, will talk with Ann and Joyce, and see where I go with it. 

Less is more - Dr. M. briefly used a yellow filter lens, and noted that it made a difference for a spatial activity, commenting that because I'm sensitive, even a small amount of something can make a difference.  I also realized that since a small amount can make a difference, AND allows me to pay more attention to what's happening, I actually sometimes get more out of doing less.  Obviously building up to doing more of something is a goal, but I think that part comes naturally.

Goals - he asked me what my goals were, and I said it was hard to choose, but that I'd go with being more social, and doing more with my flute.  My initial thought was "how on earth can I choose?".  But music and social life continue to be really, really important to me.  There are other things that I want - i.e. reading - but technology doesn't help with socializing or music as it does with reading.  So thinking back on what I said, those goals definitely top the list. 

Pacing - Dr. Margolis reminded me of the basic rule, which is that if I need to recover for a few minutes, that's acceptable.  In fact, I can expect that any home therapy will require SOME recovery time.  He didn't specifically say this, but I think if I need no recovery time, I'm not challenging myself. However, needing an extensive - say half an hour or more - recovery time is not good.  That means I've pushed too much, and probably feel lousy.  The strange thing is that for me at least, there isn't sort of in between - it's either "wow, I really over did it, and now I have to chill for way longer than I want and this sucks," or after a few minutes, I can move on. 


He commented that "if you change nothing, nothing changes." Simple but true.  Once I learn something through VT (or Feldenkrais - FT - for that matter), I want to stick with it.  It's hard to on purpose make myself feel uncomfortable, given that I still feel disequilibrium every day.  Making myself feel that way, or feel dizzy in order to make progress sucks.  But I understand that I have to tolerate some symptoms.  That is, unfortunately, the nature of my rehab.  So I have to make changes, because having nothing change isn't acceptable.

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January 14th 2016 "See Me" and "Me Before You" reviews...

Sometimes finding a good audio book to listen to is difficult, so I'm sharing a couple audio books in case any of you have the same problem. "See Me" is by Nicholas Sparks, whom some of you may know as a writer of love stories.  I've listened to a number of his books - some better than others.  "See Me" is his newest book - it came out last summer - and I'm telling you all about it because it touches on so many relevant issues, but is also very good story telling.  I think it's one of his best. 

It's a combo love story/suspense story.  He touches on sexual harassment in the workplace, mental illness, stalking, immigrants, and sexual orientation.  That may sound like a lot, but it ends up - I think - working well.  To my mind, there are many issues that real people deal with in their lives, so I like a book that deals with a number of issues - for me, it made it more interesting.  That said, none of this is heavy handed.  "See Me" is an enjoyable, engrossing story, I came to care about the characters, and it definitely got me out of my own life.  The core message of the book, I felt, was not just love, but friendship, loyalty, and having someone else's back. 

"Me Before You" is a very different book from "See Me."  Jojo Moyes found out about a 23 year old young man who was a rugby player, became a quadriplegic as a result of a rugby related accident, and couldn't get him out of her head.  There are a number of articles about him online, if you want to know his story.  So Moyes created a story based on the real life 23 year old.  She fleshes out her narrative with a love story, and various complications in the lives of the central characters.  But the main thrust of the story is about Will - the quad in her story - whose parents hire a caregiver named Louisa.  Will is a 35 year old who had an extraordinarily successful, full life prior to being injured.

There is a movie - which I've seen - based on the book.  The movie does a pretty good job, and actually some of the more tangential relationships are less fleshed out in the movie, which is better.  However, there's a lot to the book that makes it worth reading - or in my case listening to - as opposed to only taking in the movie.  There are some very serious quality of life issues which this book confronts - issues that I think many shy away from in real life. 

Moyes did her homework; she does a good job of laying out the various complications a quad deals with.  I learned a great deal.  Again, some of this comes through in the movie, but far more is in the book. MBY also made me think about my own situation.  My limitations, the changes in my life after I got sick, issues of dependence vs. independence, and quite simply what makes life worthwhile for each of us as an individual.  None of these answers are the same for anyone. 

MBY ended up being a somewhat heavier, more intense book than I'd anticipated, but I didn't find it depressing.  I think the overall message is one of hopefulness, the impact someone can have in your life, and choices.

If any of you have a book recommendation, please comment and let us all know - thanks!

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January 5th 2016 Flute video/recording - finally!

Yes, I finally recorded myself :-) ... it was a team effort.  My daughters, home on break, helped with the recording, and video production, then Ron uploaded to my computer, and my daughter Leena finished the job.  This video is actually from two separate sessions - no, I didn't change outfits in between recording LOL - but Leena edited everything together.  Scroll to bottom for link.

So what did I learn from the whole experience?

1) I needed a lot of help on the technical end (there were a number of pieces that I could not do myself), but it was interesting to see myself playing.

2) I was reminded that motivation - in this case, because of a project I was FINALLY doing - matters.  Making progress, especially when it's really difficult to MAKE progress, feels pretty meaningless unless you have a reason to do it.  Seems like the big "duh" but it's true.  There's a balance between making music for self-expression, and making music as a shared experience.

3) I need to find a simpler way to present recordings.  I need to find out about using a tripod for Ron's smart phone, on the theory that video production would be easier.  I want to do more recording, but I need a way to do it so that I'm not QUITE  so dependent on others. 

Despite the frustrations, I'm glad I did this.  This video is very different from the ones I used to post on my channel, and the inner critic in me feels sad about that.  On the other hand, this is a far cry from not being able to play at all.  So I took a deep breath, and decided to share a bit of my music, in addition to sharing my words. Just as for this one, I'm not going to worry about future videos looking or sounding like I recorded in a studio. The point is for me to have some fun. 

I hope you enjoy it, and thanks for watching!



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