A HAPPY TIME

Fourteen years ago yesterday, Joanne and I meet at a morning church service.  Latter that evening we had our first date.  We didn’t realize it yet, but we were to be a couple from then on.

We celebrate December 21 each year in addition to our wedding anniversary.  This year we exchanged gifts then went out by ourselves to a local Italian restaurant we knew to be easily handicap accessible.  This was our second outing sans chaperon since 11-11-11.  Instead of doing a board transfer, I stood to get in and out of the car.  I had fun showing off to Joanne.

This year was much better than last year when I was in the hospital with very, very limited movement.

The pictures below are of us yesterday posing by the Christmas tree, and exchanging gifts.

Please note that I am standing unaided in these pictures. Joanne is holding on to me just because she likes me – not because I needed it.  True, the walker is nearby, but still a few feet away.  I can stand still and use my arms fairly well for a few minutes.  I can also take a couple of steps without any support, but that requires Lupita hovering, ready to catch me.

The white straps on my legs are so I can pick up and move my legs with my hands.  These are a must for getting in and out of the car.  The bed also.

In one picture you see Joanne opening a necklace gift.  I strung the beads to make it, so that makes it a special gift.  Joanne recognized that not only was stringing the beads a feat for my hands, but also for my eyes, being as poor as they are.   I had became concerned when I realized how tiny the holes and thread were, but it seems my eyes have improved.  Lupita did all the things I couldn’t -  like cut the wire, crimp, and attach the clasps.

Joanne wore the necklace to dinner last night and to work today.

I’m through writing now…

TOO CHILDISH?

Sometimes a grown man needs a mommy.

Lupita and I work with my hands (along with everything else) when we go to the gym.  My hands have a really long way to go.  Recently, we have been building forts and towers out of dominoes and jenga blocks.  I build – she coaches.  I used to love to do this when I was a young boy.  I enjoy it now too, but it seems terribly juvenile.   And terribly necessary.

At first I kept knocking everything down because I could not control the blocks with my fingers.  Or I would drop the blocks on my partially erected edifice.   Or I would ram the structure because I could not control my arm movements well.   With lots of practice and coaching, I am learning and getting better with my movements and developing new skills.  It seems to come much as a toddler would progress with age.  You have heard of people having to re-learn everything – that’s where I am.  It is harder to do than I imagined.

Recently, I have been able to pick up and manipulate blocks with my left hand.  This is big stuff for me – although I cannot yet successfully place anything yet with the left.

Each time I accomplished something, I wanted to make sure Lupita saw it.  If she didn’t, I would struggle to replicate the achievement.  Then I realized that not only was I toiling as a youngster would, but I was seeking the same kind of recognition and approval a small child would.  Wow - that really adds to the juvenile nature of it all.  But it also makes it more fun.

Lupita and I have a new game.  I exclaim “look mommy” and proudly perform my latest accomplishment for her approval.  She dutifully watches and honors me with ”You did it!  Good boy!”  I bask in the glow of her acceptance and seek to repeat the whole process again by dazzling her with evermore increasingly awesome feats.

Talk about re-learning EVERYTHING.  Physically AND mentally.

 I use Lupita as my surrogate mommy because my real mommy can’t be there.  That would be even more fun though.  For awhile anyway, until it became just too silly for even us.  You parents of youngsters take note – be sure to play this game with your young ones.  I have re-learned that it motivates further development.  And it feels good.  And it’s fun.

I’m through writing now…

ANOTHER STAGE

Last Monday I set a new record for walking.

I bested my previous record of 185 feet by walking 345 feet.   I did this without any rest breaks.  My legs felt unusually limber – so I just kept going.  I felt like the energizer bunny.

The next day I was discharged from out-patient therapy.  No, the two events were not correlated.  I had been scheduled for discharge since Thanksgiving.   Ostensibly, I met all the goals for my first session.  I can’t help but note, however, a number of other factors.

First, I have just past the ‘magical’ one year mark (November 24) which research has shown to be a major plateau time.  Insurance is very reluctant to cover plateau times, thus they would have pushed to discharge me about now.  I wonder if this practice helps create a self-fulfilling prophecy.

Second, it’s been 6 months since I started out-patient therapy.   A therapist told me that even though I have ‘medical necessity’ insurance, insurance itself says 6 months is the limit of ‘medical necessity’.   This is still much better than most insurance that limits you to a total of 20 sessions per year – or even per injury.  By contrast, I have received over 150 sessions.

Third, I have been hearing other patients all around me being discharged of late.   The gym is suddenly full of new faces.  I only recognize one from before.   It appears TIRR out-patient may be in the habit of rotating patients.  They certainly have a large enough waiting list to justify it.

This is not to say that I can’t get more rehab.  I will simply have to be reevaluated at some later date and ‘prove’ that I am ‘worthy’ of more insurance converge by having made substantial recovery with out the benefit of rehab.  This is the same basic procedure I have been through my entire experience with this injury.  I am used to it now, but at first it was frustrating and scary to learn that even the best insurance available (outside of congress) held total control over my recovery.  Talk about death panels – that’s the system we have TODAY.  Yet most people don’t know that (I didn’t) and even more would refuse to believe it.  After all, Fox News tells them we have the best medical system in the world.  That might be true if you are speaking only of the congressional plan.

I expect to go back for another round of rehab – because I have Lupita and a good support system that can facilitate continued, substantial improvement.   In fact, I have every advantage in this game.  But most do not.  Assuming they have made it this far, this could be the end of the line in their recovery simply because they lack the support structure required to jump through the next insurance hurtle, or didn’t have enough insurance to begin with.  Then there are the record 42 million Americans whose jobs do not provide insurance at all.

It would be nice if I could do something for the less fortunate injured people I see all around me.  Oh wait, I already do – I vote democrat.

I’m through writing now…

SEPTEMBER MOURN

it has been just over a month since my last blog entry.  i seem to be getting back on track to some extent, but it seems that i mostly lost September.  not a total lost, but not those big gains i had been expecting.

suddenly i started having a hard time doing my 'sit to stand'.  this greatly concerned and perplexed the pt guys.  they told me insurance would not allow them to proceed with my walking until i could stand - because i could not walk without first standing up.  i could pull myself up using something and i could get up with someone helping me - but this was not 'functional' to insurance.  i lost a lot of therapy time while they chased this idea and that and it looked like they might make wholesale changes to my therapy and exercise programs.

i was not a happy camper because i did not understand the point of some of it and then they said i needed to relax my abbs.  i had just gone to a lot of effort to strengthen my abbs as part of  'core' training in order to walk.  now they started me doing a ridiculous new exercise to relax them.  things looked very dark - a detour that could potentially consume many more weeks ahead.

finally, they decided to test my braces and found that an adjustment they made to them at the end of august was causing all my problems.  at this point, this was just wonderful news to me - it meant i could get back on the right track again.  so last week i walked 185 feet one day and 170 feet the next.

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i had been waiting for a new manual wheel chair since early June.  it had to work its way through the paper trail at the main tirr hospital.  Joanne and i had to stay on their backs constantly to get that done.  for some reason nobody there follows through with anything.  in the end, insurance denied it anyway because the doctor did not state it was required because of a change in my condition.  keep in mind i already changed doctors once, i now have the best one there.

so the new wheel chair has to go back through the pipeline again.  in the mean time, i have to become 'functional' with my sit to stand using the dorky little loaner chair i have.  the therapist found that putting a board under the seat seems to solve the three biggest problems i have with it.  jimmy is making a board for me this weekend.  hopefully i will soon be functional in that area too.

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i have some other on going general health problems getting me down. i am supposed to see the doctor this Tuesday.   i am hopeful he can get me back on track in these areas too.

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in ot i have been reaching out with my arms and doing things while standing.  this is required because walking, by itself, is not deemed by insurance as 'functional'.  getting up from the TV and going to the dinner table is not 'functional'.  getting up from the TV, going to the kitchen, and fixing a sandwich or cooking is 'functional'.  what i have been doing in ot simulates those 'functional' movements.  it also tests my standing form and endurance.  they say i am doing very well in this area.

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i used to not be able to turn myself in bed at night.  in the hospital and nursing home they would turn me every 2 to 4 hours.  this is required to prevent bed sores.  bed sores can kill people in my condition.

when i first got home i had to call for Joanne to turn me - a lot.  then i hired a care giver who spent all night with me on the nights Joanne had to work.  i got better at turning myself, and was recently able to let that care giver go because only rarely now do i have to bother Joanne.  i start out on my right side, but then i have to alternate between my back and left side for the rest of the night.  i could not get back onto my right side, no matter how much my body wanted to.
sometimes that has left me fairly miserable. 

last night i turned back onto my right side for the first time.  it felt very good - not just the accomplishment, but laying on my right side.  woo-hoo.

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i have been bending my left knee much better of late. i originally started my 'left knee project' to help me turn onto my right side.  turns out i do not have enough force to kick with that knee yet for it to be a factor in turning, but it has sure helped in walking, and moving the left leg in general.

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i am typing with three fingers now instead of just one finger.  i can use both the first and second finger of my right hand, and my thumb on the space bar.  i also bought a track ball with big buttons on it to replace the mouse.  the mouse is a far superior tool, but i can control the track ball much better.  track balls are ancient technology, but then so are spinal cords.

what ever works.  i enjoyed my spinal cord for many years, now i enjoy my track ball.

I'm through writing now...

LABOR DAY

what did you do on labor day?  i went for a walk.  back and forth in the standing frame that jimmy built for me.  that's about 4 ft. in distance.  i did about 18 laps for a total of maybe 70 feet.  ok - i exaggerated when i said marathon and jerry lewis was no where to be seen.

last Thursday i walked with Steve, one of my excellent therapists at tirr outpatient, for 103 feet using a walker.  but most of it was in very bad form.

my walking on labor day was in much better form.  the exercises lupita did with me were obviously paying off.  i was excited and hopeful that i could do as well with Steve on Tuesday.

and today is Tuesday, and i walked in my best form yet in a walker with Steve.  i did 165 feet - all but the last few feet were really good.  those last feet were not too bad either.  i was very pleased.

i walk very slow, but faster than my 90 year old mother-in-law does with her walker.  how's that for a measurement of success?  I'm good if i can best a 90 year old little lady.  she still has me beat over all, though.  she does better 'sit to stands' than me and she walks without people hovering in front and back of  her in case she falls.  i guess shes my idol.

she also has lived 90 years and managed not to get a spinal injury.

I'm through writing now...

NEXT STEP

so...

yesterday tirr rehab walked me using a regular walker.  woo-hoo!  they will be doing more of that, but today they worked on my 'sit to stands' and made more adjustments to my leg braces to help me do everything better.

but get this - today they also started prepping me toward my next step. walking without a walker.  double woo-hoo!  i am currently bending foreward far too much to walk without a walker.  that's because my top thigh muscles at my hip are too tight and that forces me to bend foreward at my hips.  therefore, i need the walker not only for lateral support, but also for frontal support. 

they showed lupita an exercise to perform on me to stretch out that muscle which will allow me to walk up straight.  lupita recognized that the intended results of the exercise were the same as the 'superman' exercise she used to do with me just after i started out-patient.  she stoped doing it in favor of strengthening my core muscles when she anticipated they were going to try to get me standing so soon.  strong core muscles are probably why i have progressed to where i am so quickly.

the military makes the service men do lots of  'superman'  exercises.  lupita now theorizes that is why they stand so straight and tall.

i am very excited about all of this.  i am seeing months of work starting to pay off. 

i wish i was advancing as much with my hands.  i have about 30% return with my right hand, but only about 5% with my left.  hands are important - probably more so than walking.  even so - i can eat, brush my teeth, shave, comb my hair, do transfers, wheel my wheel chair [if i have gloves on], type [one fingered], play on the computer, hold a book/magazine and turn pages, and several more things that i am not thinking of at the moment.  i have to remember to be grateful for that and, of course, hopeful for more.

I'm through writing now...

WALKING TO NEW ORLEANS

walking to new Orleans was a hit song for fats domino, hitting number 6 on the billboard charts in June, 1960.  a personal favorite of mine.  i am borrowing this title because that is how i am feeling today.

i wrote just yesterday that my therapist had said i would soon be graduating to a normal walker.  i didn't know he meant today.  we tried it, and i graduated.

my first attempt i walked 20 feet.  that ended when i tried to fall.  lupita videoed it, catching the last part, including me falling.  hopefully she will share that with all of us.  my therapist didn't allow me to actually fall - as you probably surmised already since you are reading this.

my next attempt i walked 45 feet. that ended when i got tired and set back in my wheel chair.  lupita didn't video that one.

i did very good on my sit to stands too.

next i may be sending a post card from new Orleans.

I'm through writing now...