November 3, 2019 - My new normal

I'm special... no really, I am... I'm part of the roughly 1% of the population that has migraine associated vertigo... when I ...

Archive for June 2019

June 30, 2019 gathering info, hopefully leading to answers

I decided to share this in case someone out there will benefit from the info. I know *I* benefit when others share.

With a lot of help from my daughter Cara, I finished Cheri's online auditory/vestibular adult assessment. Cara clicked to save as a pdf, I e-mailed it to Cheri, & she called me this afternoon.

Cheri's going to e-mail me a summary of our conversation, but these are the basics. She wants me to get a sleep study, which means first seeing a neurologist, who would write the order for it.  My husband Ron has a friend who  knows an excellent neurologist at Evanston Hospital, & Ron's going to see if I can get in to see the guy within a month or so.  If the wait's too long, I'll go to the same neurologist my daughter saw - not an outstanding doctor, but definitely competent.

Cheri wants to see if I have central sleep apnea. She's concerned that I actually had a stroke that night back in September 2011. She also wants me to get a referral from the neurologist for an ENT with expertise in vestibular issues and Ménière's. She said there's a possibility I'm in the early stages of Ménière's. I wasn't happy to hear that, but also not surprised.

Cheri said until I know if anything's happening with my sleep, she's recommending that I do home therapy for vision therapy, but not the sessions.  Feldenkrais calms the sensory system, but vision therapy challenges the vestibular system, and that may be stressing my system right now.

So, it's a lot to process, but I clearly need to get as much info as I can, & as much understanding as possible.  It will only be in getting as much information as I can, that I can move forward to live my life as fully as possible.  Cheri really does her homework, for which I'm very thankful.  She really is exceptional.

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June 26, 2019 Auditory integration training??? worth exploring...

I spoke with Cheri Moore, the auditory integration training specialist who we've been talking to re one of our daughters.  I wanted to tell her my story, & get her take on whether auditory integration training - AIT - would help me.

I told her my whole story in summary, & she agreed with Dr. Margolis' assessment that the night I got sick was neurologically like having a stroke, & Christina's statement that trauma changes your brain. 

Cheri asked me lots of Qs, which I did my best to answer.  She also asked me to e-mail her the hearing test I had done this past March, & I'm also going to have Ron send her the hearing test I had in Oct. of 2011, since I recently found that in my medical records.

Cheri's going to do some homework, & talk to an audiologist she works with, & I'm going to talk to Cheri again on Fri. afternoon.  I'm not looking for a miraculous recovery if I do AIT - or new diagnoses - but this seems worth exploring, given my sensory problems.

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June 23, 2019 How I notice progress

I realized something - the fact that I've recovered as much as I have is wonderful & remarkable... I'm not miraculously cured, but I'm so much better than I used to be.

I still think about the mistakes along the way, and find myself wishing I'd gotten to where I am now, sooner... but I didn't stay stuck - which is what really counts.

I also know just how fortunate I am to have been able - & continue to be able to do my therapies. This has given me time to process, to grieve, to reassess, to readjust - this is the human experience of rehab.

My medical team benefits from this as well - getting to know me, learning what works for me. I often wish I knew what to expect, because my PTSD still looks over my shoulder, expecting something bad... yet I looked at My Timeline of Progress (10/24/18), & I see that I can update it, adding that I now have prescription sunglasses, & prism as part of my prescription for my reading glasses.

I didn't add this to my timeline, & I don't write about Feldenkrais much, but finding Feldenkrais was my first step towards recovery, & I learn from it all the time... this past week Joyce told me that she thought I was finally ready to handle more direct work with my eyes - pretty cool!

I'm still waiting for a definitive finish line, but the reality is that unlike an actual race, there seldom ARE definitive finish lines.  More often, there are transitions, & changes. I want to keep improving - growing & learning, but I also want to notice what's happening right now.

So, I made myself stop, think about this past week - here's what I came up with -

1) handling quick phone calls from Ron, even as I did some things on my computer.

2) handling a few texts while being on my computer.

3) transitioning into an activity when I get home from walking Cosmo.

4) handling some schedule changes on a couple of days this week

5) Sorting thru some medical files - that was interesting

6) being aware of my movements in new ways when I do my Feldenkrais home therapy.

7) Noticing my visual horizon, particularly when I play my flute, or the piano.

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June 20th, 2019 Vision therapy - vectogram, puzzle, laser toy

I did a variety of tasks today, working on a variety of skills, which means continuing also to work on integration.

I worked with a vectogram - this one, as you can see from the picture, was of a large container of popcorn with kernels floating around it, some kernels appearing further away than others.  

I used this to work on convergence and divergence, and depth perception. Depending on how Ann moved the plastic sleeve, the image either appears closer, and smaller or appears further away and larger.  

Further away and larger is diverging, and actually just as important as converging.  It's also important to be able to switch between the two, since we switch our gaze multiple times during the day.

The other picture is of a child's puzzle.  This had been turned into a vision therapy exercise by taking a picture of the puzzle, & adding lines to make the grid.  To use this for a vision therapy exercise, the puzzle pieces are taken out, the picture is in front of me, and then I fill in the puzzle.  This means that a flat picture grows into a raised picture with a 3-D quality to it.

I was able to complete the puzzle, and we used the picture and the puzzle in a variety of ways – different angles, holding the picture up, so that I was looking up at the picture, and then down at the puzzle .

I also used a laser toy – a small green light - to trace lines that Ann drew on a chalkboard.  I did this while sitting in a different chair facing the chalkboard.

I ended by asking her some questions about how to use my Brock string. She recommended 3 reps for 3 seconds each, & build from there.

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June 16th, 2019 Letter to James - what about rehab?

June 16th, 2019
Letter to James Clear
(Yes, I'm actually sending this letter :-) )

Hi James - since you don't have an e-mail address that you respond to, but you shared an old-fashioned paper mail address, I decided to try that.

I've listened to your book Atomic Habits, & I loved all the scientific evidence that you cite in your book. My one big disappointment however, is that other than sharing your story in the intro, you don't refer in your book to rehabilitation.

I'm doing neurological rehab - specifically Feldenkrais, vision therapy, and cognitive behavioral therapy. I would have loved to have heard, throughout your book, how you used the habits you were learning, in your personal journey of recovery.  I think this would be a real service to anyone - in addition to myself - who's doing rehab. Also for people who are living with any number of disabilities -both visible and invisible. I believe there are unique issues in these circumstances.

Perhaps you have written about this - if so, I'd very much appreciate having access to this writing.  If not, I hope you'll consider writing about this in the future.  You could help SO many people.

Thank you, & I look forward to hearing back from you.
Tamar Schwartz, AKA Visible Person, Invisible Problem (blog site name, & Public FB page name)

(actual letter has my home address, phone no., & e-mail address - I hope he responds)

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June 14th, 2019 6 things to remember, & another list

I finished listening to James Clear's book Atomic Habits: Tiny changes, remarkable results. The strength of this book - what fascinated me - is he cites lots of scientific evidence (research, experiments), with dates for historical context, & people's stories.

The negative - except in the intro, he never talks about the severe head injury from which he had to recover. I wanted to hear more about his journey, & how he learned/applied his ideas to get to where he is now.

So, I decided to see what *I* could relate to my neurological rehab - & maybe it'll help some of my readers.

1) tiny neurological changes add up.  Change may be hard to see, but it's happening.  Awareness matters, notice even the smallest thing.

2) make home therapy accessible - see the pic of my Brock string, ready for use even with a busy background.  The string gets held by me at one end, so it's stretched out from the handle it's attached to.

3) show up - it's a guarantee that some days, parts of days, whatever, will be difficult. Doing something - even 1 rep of something, 1 min. - basically any small thing - is better than nothing.

Showing up isn't just about my therapy sessions, it's about doing things on my own.  It's showing up when it's hard that really makes me/you feel good about myself/yourself in the end.

4) make goals manageable - stamina is a really BIG idea, but I can break it down.
What kind of stamina? visual, vestibular, sound/sensory, often a combo?
Do something for a little bit less or more, depending on the thing - again, it adds up.

5) Change - rehab isn't static - add little changes, to keep learning, progressing.

6) Values - Christina and I talk about values, which helps me narrow my focus  - sometimes I feel like I have waaay too many things I want to work on. 

I want to make progress in therapy. This means hard work, & taking the long view, but also trying my best to live in the moment.

Enjoy what I can do now -

my current ability to manage our household

take care of our pets

make music, & find ways to be creative

weed flower pots by myself

plant flowers in flower pots by myself

walk our dog with Ron - or on my own when Ron's not around

Learn about my rehab - especially vision, which really interests me. Ask Qs, listen to articles, books on neurological rehab.

Recognize that having the ability to think about how I want to spend my time is a huge gain for me.

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June 9th, 2019 - wow, 40th plus!

Here's this week's list -

1) going thru a LOT of receipts!

2) going thru some files

3) plunging a toilet myself - yup, whodathunkit, but this was a little step of independence LOL

4) playing my flute, & then our piano - I've never done both in one day before

5) another budget discussion with Ron - definite brainwork

And now for the BIG stuff -

6) doing vision therapy with a different therapist - Ann did a lesson plan, & I made the choice to do this - 1st time in about 3 yrs (in the past, I skip if she's unavailable).

7) I attended my 40th U-high (University of Chicago laboratory schools high school - yup, it's a mouthfull LOL) reunion  - some of the Alumni reception, did the class pic (see group shot), and the dinner!

Exhausting, but very glad I went - great to see my former classmates (God, is it really 40 years?!), & reconnect :-)
Ron & I parked by my parents house - they still live in the Hyde Park house where I grew up - I had my snack, & visited a bit, & then walked to school :-) talk about a trip down memory lane.

Some things VERY different, some things not.

My personal fav pic - the button I grabbed on the way out - I didn't look at it - in school colors, & then later read - it says "spread kindness be awesome" - if you spread kindness, you're awesome. Works for me.

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