Friday, March 6, 2009

Breaking News: Spasms and what they lead to

Breaking news, March 6: First, two friends from the English Department were there at South Davis this afternoon, after I’d already left for the day, and each called me independently to report an extraordinary occurrence: Brooke was able to make some voluntary movement his left leg. Then Brooke himself called later to describe the same thing.
Here’s how it went: he was doing physical therapy with the P.T. person at South Davis, and had one of those big spasms that have been plagueing him, but this one he says somehow morphed into a really powerful downward-pushing movement, as if you were riding a bike, and somehow he managed to get control of it, to make it voluntary and repeat it several times as well.
Then it was time for a shower, and when he got out of the shower, with various nurses around, he suddenly started to be able to move each of his knees up (this is with the hip muscles), and then his quad muscles, just a bit, but voluntarily. I’ve just now been talking to him on the phone and there he is, lying otherwise motionless in bed but moving his legs up and down, just a bit, but moving. Voluntarily. Of course, if you could see him, you’d see that his leg muscles, both thighs and especially calves, are horribly emaciated, and while one doesn’t like to make reference to Auschwitz lightly, that’s the way these legs look—bone, bone, hardly any flesh. In fact, he said just a day ago that they’d put him in an upright shower chair for the first time, and that he’d seen his legs naked, both in the mirror and directly, for the first time. He said that he’d always loved his body and the way it was strong, but that to see it so shriveled would be hugely painful if he didn’t have such a strong sense of the growth of the mind—so much has been happening mentally than the physical stuff pales in comparison.
But that was a day ago. Tonight, I hear real excitement about the movement in the legs. I haven’t gotten to see them yet, but I’m hearing about it. It’s reminding me of something: I had a wonderful research assistant some time ago (I try not to mention names in this blog unless it’s okay with people, but you know who you are). This guy was born, a first child, when his father was 50. The father had some sort of demanding job, but when he came home one day some months after his son was born and discovered that the baby had turned over for the first time, he said, that’s it, I’m quitting this job, I’m staying home to see every event in the development of this child—and did. I feel something like that (though I’m not thinking of quitting my job)—that there are amazing developmental events going on with Brooke that one doesn’t want to miss. Legs moving, even if slightly, under voluntary control. Breathing off the vent, with only an oxygenating and humidifying trach cap, forty-five minutes this morning.
Be still, one’s heart, lest it leap too high. It’s the current moment that counts. He’s still virtually completely paralyzed and still on the vent, and there aren’t any guarantees.

But the current moment is pretty nice, considering the circumstances. The South Davis facility is actually quite nice—Brooke has a huge, quite lovely room with real furniture, civilized enough so that it’s actually a pleasure to be there. Some friends have come for dinner already—no names can be divulged, but one couple brought a huge basket with a fresh pasta with smoked salmon and caviar (!), plus a nice salad and a bottle of good wine; the next night some more friends came with a brilliant lasagne made with béchamel sauce, wonderful, and another bottle of nice wine; and somebody’s there tonight too even while I’m home writing this, obviously with way better stuff than I can find in the fridge here. Of course, it would be better than what Brooke might have gotten if friends weren’t bringing these delicious things—while some of the South Davis facility’s meals are good, they don’t focus on dinner—it’s called supper, and the low point has been a grilled cheese sandwich (Velveeta on Wonder Bread, I think), with a pile of potato chips and green Jello. (Fortunately, he’s still getting tube feedings at night.)
So this is really an invitation—if you’d like to come for dinner and bring along some food, even just what you’d ordinarily be eating (as long as it isn’t velveeta or green Jello), just let me know 824-9160 and we’ll plan something. Of course, gracious living in a hospital facility isn’t quite like home, and there’ll be nurses running in and out to take blood pressures and catheterize him and turn him from one side to the other to prevent bedsores, but it’s closer to home than we’ve been in a long time. Just call me, and come on up. It’s less than 10 miles, but seems like an entirely new world.


Lorraine Seal said...

This sounds like very good news, the spot of golden light along the climb to the top of the mountain, reward for enduring the spasms and the pain.

I continue to read your entries and think of you. Writing is hard right now, but I'm there with you. Wish I could bring over some food and wine to share it with you.

Keep climbing.

Ellen B said...

This all sounds like really wonderful news, as obviously any function will ultimately make life easier. Re your request for 'inventor' mode, out of curiosity I went online to and immediately spotted the following blog entry from another quadriplegic who has been using the Kindle. I don't know if it is of any help, but thought I would paste it below. Ellen B

833 of 854 people found the following review helpful:
5.0 out of 5 stars a quadriplegic reading in bliss :-), February 24, 2009
By Ben C. Hobson "In chess the winner is the one who makes the second to last blunder :-)"
hello, my name is Ben. I'm a 29-year-old quadriplegic (paralyzed from the chest down, all four limbs affected. I can move my arms pretty well, but I have no use of my fingers and they are contracted.)

Without the use of my fingers you can imagine how difficult reading books could be, but I loved reading and I found ways. I had a surgery about two years ago on my midsection which made it impossible to tolerate the weight of heavy books, and without the use of my fingers paperbacks were not an option (they would simply fall off the book holder when I tried to turn a page.)

Into my life comes the Kindle. That was back in December when I got the Kindle 1. I literally shed tears as I realized Amazon had given me back the passion that had been stripped away from me after my surgery just as my mobility had been taken away 14 years earlier. Now just a few months later we have an upgrade. I feared an upgrade with a sleeker design would be the end of its handicap accessibility. I am here today to tell anyone with disabilities nothing could be further from the truth. For those of us with poor dexterity the five way controller can be manipulated easily with a knuckle, or even the side of your hand since the controller sits just slightly above the other buttons. This for me was a major improvement accessibility wise from the first unit since trying to push the button with my knuckle would often scroll down and select the wrong thing. The five way controller also takes very little force to push, I was often afraid of breaking the Kindle 1 with how hard I had to push on the wheel with the side of my hand.

I love reading the newspaper every day, but reporters love to push the boundaries of our vocabularies, but the Kindle 2 dictionary is right there to keep us reading, and make sure we know exactly what we are reading so we don't misinterpret anything. The improved dictionary lookup is amazing. I no longer have to go to a menu and look up an entire lines worth of words. I just use the controller and go to the word I want and the definition is on the bottom of the screen :-)

We can now access the Internet without turning over the Kindle to flip a switch :-) you just go to the menu and turn on the wireless. I couldn't tell you how many times I wanted to look something up I was reading in the newspaper only to find out I didn't have the wireless on. Turning it on then would've required me to call my caregiver, have them turn it on, leave the room while I did my research, and then call them back to turn it off. Thank you very much for the great improvement :-)

The buttons are a little smaller, but not so small that they are not accessible. I can still easily hit the buttons with the side of my hand. The only real difference is now when my caregivers put the Kindle away for me they don't accidentally turn pages, or click a button and say "I didn't mess anything up did I?"

Speaking of pushing buttons I loved reading magazines on my Kindle 1, the only problem was I didn't want to read every single article, and being disabled it was just a little inconvenient to have to keep clicking the wheel to get to the menus to scroll through the magazine. So what did my good friends at Amazon do for me? Well they went and made it so if I don't like the article I'm reading I just have to push my little joystick to the left or right one time to go to another article :-)

Some people miss the memory card slot. I myself did not start reading e-books until the Kindle, and I have no problem with their prices for books. Since the device can hold 1500 titles and whatever erase from the device to make room is backed up at Amazon I have no complaints in that department. Anyway if I do find other e-books I like I can simply e-mail them to my Kindle :-)

Yes we have to send our Kindle to Amazon to replace the battery, being disabled this is actually a convenience for me, and there are also a lot of music devices out there that you have to do the same thing. So I will not complain about this either :-)

If I knew the e-mail address for Jeff Bezos I would happily send him this review that I will also be posting in the forums so he would personally know that he has truly changed one man's life for the better, that this device for some of us will not just be incredibly convenient, but that it will be life altering.

In my profile is a picture of me holding the Kindle 2 reading one of my favorite books :-) I hope the picture shows accurately how easy it is for people with disabilities to use. I just put a pillow on my midsection so the book will have something to lean against while I turn the page with my knuckle.

I can offer no higher praise so with that in my review ends. Thank you...... thank you Kindle team.

Ellen B said...

PS. As a second thought, the Kindle has a 'text to voice' function. I understand from a recent review I read that the voice is nothing to write home about, but my question is whether in using the voice mode, one has to turn pages at all?

Ellen B