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...

June 30th 2015 Feldenkrais & Vision Therapies, & the people I work with....

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

Feldenkrais and Vision Therapies - my rehab - are a big part of my life.  I've said that before, but it's worth repeating, because I want people to understand that FT and VT are so integral to my life.  Based on the feedback I've gotten, people seem to be interested and curious about my therapies.  So here's a bit more of my experience, and a little about the people I work with.

My Feldenkrais Practitioner, Joyce, is a Guild Certified Feldenkrais  Practitioner® (GCFP), who trained with Anat Baniel, a Registered and Licensed Occupational Therapist.  I've never met Anat, but I know that Joyce has regular contact with her. As I've said before, Feldenkrais therapy was invented by a man named Feldenkrais.  There is an institute in New York - this is a link to their site - http://feldenkraisinstitute.com/, and other info online for those who want to learn more. 

For my vision therapy, I work with Ann, who is a Certified Vision Therapist.  She is supervised by Dr. Neil Margolis, a Developmental Optometrist.  Here's some of a basic explanation from Answer.com about Developmental Optometrists, who are considered specialists in the field of eye care:

"... emphasizes proper visual development of their patients. Skills that can be underdeveloped include eye focusing skills, tracking skills, and binocularity. Conditions such as amblyopia, or lazy eye, convergence insufficiency, and eye focusing troubles can be addressed with vision therapy....These optometrists will usually join  - and can do additional training and education through - an organization known as the College of Optometrist in Vision Development, or COVD. An optometrist who does extra research, publishes case studies, and passes rigorous testing can become a fellow of the COVD. Hence the title of FCOVD is derived from this process...."

Dr. Margolis is a fellow of the COVD, and does continuing education for himself, as well as speaking in various forums to provide info about eye health and VT.  There are others in this specialized field who spend time doing this; doing VT is a specialty that people need to know about because it can have such dramatic consequences for children, as well as adults.  I wrote in "More of my story..." about what I believe happened to me, but there are also adults (and children) who suffer Traumatic Brain Injury from events like strokes, concussions, etc. who benefit from VT.  What Dr. M. does is in addition to his actual practice - I'm fortunate that he is so dedicated to his work and his patients!  I see Dr. Margolis for Progress Report consultations, which give me a chance to communicate directly with him, and he also communicates regularly with Ann.

I've also said this before, but it's worth repeating - rehab is hard work.  I have to put in effort, and so do the people who work with me.  I also have to do homework in the form of exercises I do at home.  It was a very positive step for me when I was able to handle doing these exercises; for about the first year and a half of VT, homework was very difficult for me.  I am also able to do more FT at home.  People who are familiar with the term "vestibular rehab therapy (VRT)" tend to think of exercises done with a PT.  For me, FT and VT are my vestibular rehab therapy, but include additional components.  Because I do two different, but complementary therapies, I think my therapy is more comprehensive. 

I also think doing VT and FT is very different than recovering from surgery.  I've had to recover from surgery, and although it's also hard work, the rehab I am doing now has a very different feel to it.  I believe that therapy that retrains your brain, which is what I'm doing, is a different experience than getting a joint moving again, or working through scar tissue, both of which I've had to do. 

My therapies both work for me in small steps.  An example of this that everyone is familiar with is reading.  I am relearning how to do this, and probably learning better than when I was a child.  It's an unusual experience to learn to track properly, and actually process the words.  There are steps that for now are conscious, that eventually will not be.  The same is true for reading sheet music again, or walking in new environments.  If I go someplace new, one that my body doesn't know, it feels different on a sensory, vestibular, visual level than being someplace familiar.  All of me has to work harder.  So I take very small steps, and each step builds on itself. 

Sometimes I don't feel good after doing something.  I might feel tired, dizzy or off-balance, somewhat drained, or some combination of these.  But I want to push through, because I know that my tolerance for doing things will not increase unless I push through.  The tricky part is that if I go too far, and end up on overload, that doesn't help me.  So I'm always planning, trying to gage my pace, figuring out about putting my puzzle pieces together.  This is, I believe, one of the hardest things about rehab - figuring that out.  It's also one of the reasons that I think Dr. M., Ann and Joyce are so good - because they work with me so well, and listen so well to keep on putting the pieces together.  This mental processing of and about rehab is one of the reasons I get tired, sometimes drained.  And one of my goals -  one that Dr. M., Ann, and Joyce share with me - is that over time I DON'T have to think about things as much.  I won't have to plan as much.  I do see improvement - that I sometimes can move from one activity to another without quite so much forethought.

Though much of FT and VT are about small increments, I do sometimes take on bigger challenges.  I thought a lot about whether or not to go to Ravinia Festival this year with my family.  It's a very challenging venue for me; lots of sound and people and movement.  But I went last year and I decided that if I didn't go this summer because I didn't want to deal with all the challenges, I was giving in to my disorders.  And not giving myself a chance to see if it's any easier, or at least no more difficult than last year.  So we are going to go, and I think about what I can do to prepare.  Doing other activities, going to other events - like attending my congregation's Mitzvah Brunch - helps me.  It's easier to do something really big if I've exposed myself to situations with more stimulation, movement, visual challenges, etc.

VT and FT are about therapeutic exercises AND daily activities, many of which incorporate FT and VT.   I do specific FT or VT exercises that work on a particular element, push me, make my systems work, retrain my brain - my circuitry if you will - in a way that daily activities do not.  I can feel the difference between what I'm basically used to, vs. what challenges me.   That said, based on what I've learned, and conversations I've had with Dr. M., Ann, and Joyce, there are also things I can do on my own that function as exercises as well.  Many things throughout my day involve my vision, my vestibular system, my whole sensory system, so in some ways my life is therapy for me.  For example, paying attention to how I move, breathe, switch my eye gaze, use my glasses (both reading and sunglasses) - these are all pieces I can build into my day.

I'm not trying to do rehab eight hours a day, but it is at least a part time job for me, and affects many, many activities.  I think this is because balance is truly such a fundamental part of who we are, but one we don't think about unless we have a problem.  Sometimes I wish that I didn't have to do so much therapy, and that the process of brain re-training was faster.  But most of the time I don't dwell on that.  I'm very grateful to live in a time when there is so much known about this kind of rehab.  And I've become an expert at being patient.  I've accepted that therapy is hard work, but work that I have to do. 

Having my invisible disorders, and doing my rehab, I've also learned some more general coping skills.  Although I'm still independent in thought - and probably more outspoken than I used to be - I don't have the mobile independence I once did, but this doesn't bother me the way it once did.  I've gotten used to planning my transportation needs, and I'm better at asking for help, and letting my needs be known, while still trying to be somewhat flexible.  I'm constantly learning not to sweat the small stuff.  I do my best to say "OK, let it go, this isn't worth stressing over." I try hard to stay more present-focused, taking one day, one step at a time.  I also try not to focus on what others can or can't do, but rather on what *I* can do  to make progress.



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2 Responses to June 30th 2015 Feldenkrais & Vision Therapies, & the people I work with....

  1. In your Facebook post with VEDA you included an image with a quote from Moshe Feldenkrais "without movement, life is unthinkable". How can you support such a statement/belief. Do you think Stephen Hawkins has an unthinkable life???? Such an Insult !!! That man has given so much to the lives of all who have the privilege to know him. Also, my late twin - a quadriplegic who has unfortunately died after 3 decades of being without movement....a woman who became Canada's first graduate quadriplegic nurse and contributed to society at a level few will ever know. Many of my friends "don't move" and are a gift to life and have a self-joy that his unmeasurable. I am a severely vestibular challenged individual and very restricted and with the knowledge that this will decrease in a short period of time......is it unthinkable to not be able to move - no, bring it on ! and I will show you. My brother has the same prognosis and he too fears not.
    Nighting

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  2. I hope you see this response... I'm so sorry that this comment was hurtful to you.... the Feldenkrais quote was posted by VEDA (I don't know who on their staff does it), NOT by me... I do believe that movement is valuable, and I hope you will find movement in whatever way you can, but you are absolutely right that there are people who find ways to cope and still have valuable lives with restricted movement....

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