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Real, lasting neurological change (a brooaad category - I mean, we're talking about your brain, nervous systems) is really hard ...

Archive for March 2017

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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