How's Robb?

When I get home at the end of the day, Robb tends to be "finished" for the day. Either he has worked with the therapist, or he has been to the therapy gym. In either case, he tends to be experiencing spasticity, and is having trouble walking. I've been trying to get a handle on what, exactly, spasticity is, and why Robb is having so much of it lately. When Robb stretches his body, one things that happens is "neural glide." The un-elastic nerve cells are encased in a sort of sheath, and when Robb stretches, they get slide around inside of the neural sheath. Think if your leg inside of your pants leg. Your clothing protects your leg, and your leg has the ability to shift and move inside of your pants. So, now imagine if there was portion of your pants leg that was damaged, either too tight, or too stiff. You still had to walk, but the pants chafed at your leg. This is sort of what is happening when Robb stretches and moves his leg muscles. The neural she

fallingChairs , originally uploaded by DavidHerd . Stand up. Okay, now sit down again. Now think about it. How did you do that? What muscles did you use, and in what order? Now, consider this. If you couldn't feel or control the muscles in the backs of your legs, how would you manage it? What if you couldn't feel your feet or backside, and if your balance was terrible? The other night at dinner, Robb and I were talking about how he no longer needs me to help him by pushing in or pulling out his chair. Unless he is very, very, very tired he can get off the couch without assistance. This is such a huge improvement over how things were when he first came home. At that time, Robb was just learning how to manage with his new levels of ability. He had to break simple activities down into "bite sized pieces." He never did anything as simple as "sitting down" or "standing up." No. He had to learn what the therapists called the sit-to-stand

One of the great pleasures of my job is working with interns. I've been really lucky, and have worked with some truly creative artists. My current intern, Erin is a particular delight. She's bright, talented, funny, and has seemingly boundless good spirits. Erin has taken to life in California like the proverbial fish to water. She has been exploring San Francisco's art galleries, taking weekend trips to Los Angeles, expanding her culinary horizons, and riding her new bike all over the place. (She timed one bike trip so that she could be in the middle of the Golden Gate Bridge in time for the sunset.) And this morning, she was hit by a car, while biking to work. She was riding along on a main street, and a man coasted through his stop sign and drove right into her. Erin was thrown to the ground, and got pretty banged up. She must have charmed the police officer who made the report (and ticketed the man who hit her), because he tossed her bike and helmet in the trunk

I finally managed to get an estimate from a body shop for the repair to our car. Now, mind you, I have not seen our mechanic yet. The "check engine" light has been glowing balefully. I suspect that the force of the impact may have damaged the exhaust system. I have been trying to drive as little as possible, and have not gotten on the freeway since the accident. Would anyone care to guess how much the estimate for the body work was? We drive a 1995 Subaru Legacy station wagon. Nice car. But not new. Before I tell you, I'll show you what cheered me up after hearing the estimate. These are Wild Urban Parrots, playing on the telephone wires in Berkeley California. I imagine that they are cousins of the famed Parrots of Telegraph Hill in San Francisco, but re-located to the East Bay, because rents are lower and the climate is generally nicer. It was very foggy when I took these photos. Let's pretend that the fact that the pictures are little more than a silhouette is some

I haven't been going with Robb to his current physical therapy clinic. I'm busy at work, and cannot spare the time to drive him out there three times a week. The insurance company (bless their hearts) has been providing a car service. Robb gets picked up at the house and driven the fifteen or so miles to the therapists. Unfortunately, the car he usually rides in makes him car-sick almost immediately. (Prior to the accident, Robb did most of the driving when the two of us went somewhere together. Reading maps doesn't make me queasy, and I relished the car-knitting.) Robb gets dropped off at the therapist, and the driver keeps the meter running for the hour and a half visit. Yesterday, he was using the therapy gym -- not working directly with his physical therapist-- and after going through some of his usual exercise routine, he got on the treadmill for the first time without supervision. He gradually worked up to what felt to him like a brisk run. (It was about 2 miles per h

Driving Last Friday I had a driving lesson/evaluation at my rehab center. I thought the strangest part would be learning to use the hand-controlled vehicle. I really wasn't prepared for how weird it would feel to be driving at all. It's been eight months since I was behind the wheel of a car and it took a while to get used to it. Part of the purpose of the lesson was to prepare me to take a road test to get a modified license. We started off in a neighborhood and I drove around the block a few times. Suddenly, it looked like a drivers-ed video-- there were construction trucks stopped in the middle of the street, a school bus, people running stop signs... I really expected a ball to come bouncing out onto the road at any moment. The instructor and I joked that she had all these people on her payroll. Eventually we went through a busy downtown and then on a highway for a few miles. Learning the hand-controls came easy, getting comfortable with driving again also came back qu

1. Drive with Robb to the Saturday farmer's market. He probably could walk down there, but after walking the market, you would be lugging both Robb and the groceries up a very long, very steep hill. 2. Most of the handicapped spaces are taken up by the farmers' trucks. You're used to this. The placement of those spots is unfortunate, because there really is no other spot for the vendors to park so they can unload their produce. 3. After the third spin around the parking lot, drop Robb off to start shopping without you. 4. On the fourth revolution around the parking lot, a huge suv will dart in front of you, and zip into a newly-opened handicapped parking space. 5. Roll down your window and demand to know if they, in fact, have the right to park in this space. 6. The driver of this vehicle will look at you in dismay and disgust, and wave their handcapped placard out their open door. 7. You hang your head in shame.

I want to thank everyone who emailed, left comments on the blog, and telephoned. I was, indeed, very sore the day after the accident, but I think I'll be back to normal in a day or two. Strangely, in addition to a very sore neck, I've also had relapse of last week's sore throat. Most of my day was spent napping, thanks to the pain killers. In fact, Robb was more active than I was today.

I am one sore girl! Today, while running some errands for work, I was the unfortunate participant in a hit-and-run accident. My car was almost hit by a woman who ran through a stop sign. I remember noticing the huge smash on her front bumper and thinking "what a terrible driver." I had not even gone halfway down the block (and was driving very slowly behind a very slow semi trailer) when this same driver drove at full speed into the back of my car. She failed to hit me once, but apparently was no quitter, and got the job done on the second try. I was slammed around pretty well, hit my head on the rear view mirror and lost my footing on the brake pedal, but I managed to not hit the truck in in front of me, or the car directly to my right. I pulled out of traffic, and the woman stopped next to me and said, "Your car is all right." (It wasn't -- the bumper had been smashed so hard that it melted onto my rear tire. At least one of the doors isn't closing

Sometimes I find myself looking at the bookmarks menu in our computer browser and automatically selecting "How's Robb." I guess I'm just wondering how I'm doing. It almost never tells me, though. So... How's Robb? Better. The best guesses of all the doctors and therapists say that this recovery, which has been going on for nearly eight months, has about another year to go. It's a very slow process but if I look back a few months and compare, I can see definite improvement. Getting out of bed in the morning is no longer the difficult struggle it had been. My legs are a lot stronger, so standing up is easier. My ankles are a bit stronger, so balancing is easier. I no longer wear braces of any kind. I take no medications which slow me down. I'm walking farther and faster. (I'm still not at what they call "community speed"-- 1.6mph-- but I can cover close to a mile in about an hour.) I owe much of this progress, I believe, to physiot

I've had the flu, so the blog has languished. I spent most of Thursday after work and almost all of Friday fast asleep. The cats were very helpful in keeping me from floating off the bed. They took turns laying on top of me. By Sunday I was feeling better, and Robb and I met our friend Kara at Golden Gate Park for a really fun outdoor concert. Headlining bands were Gnarls Barkley And the B52s. Kara is recovering from her motorcycle accident , and we are pleased to report that she has enough mobility in her hand to once again express her feelings to inconsiderate drivers. Isn't that a heart warming tale of recovery? Although there was a wheelchair seating area at the concert, we opted not to use it. It was in the blazing sun on top of black astro turf, with great view of the sound-mixing tent, but with no view at all of the stage. We decided to sit in the shade. Robb was able to lay on our picnic blanket, which is pretty impressive to me. I think I've seen him on th

Thanks to everyone who wrote in with their support for Lisa the other day. One of the great observations was the reminder that what happened, happened to us both. Lisa has probably felt like she's not entitled to any sympathy since it was not her in the hospital bed, etc. But these past seven months have been a test of all her physical, emotional and spiritual reserves and she has come through. I don't know where I'd be without her and I don't know where she finds her strength. In the first days after my injury she was there, keeping everyone informed, researching and making enormously important decisions about my care and still managed to be by my bedside my every waking moment. And through it all: the late night visits and long drives home, the nervous transition to home-care, right down to taking over every last household chore, I never had a moment of doubt that she would be there for me. When people convey their sympathy over my situation, I feel unworthy of i

I feel like a real grown up. Today was my first doctor’s visit done solo. Up until now my Nurse Case Manager, and often Lisa too, accompanied me to every appointment. We had such good communication with Linda and she knew the case so well that if I ever hesitated in answering a doctor's question, Linda would jump right in – always on top of it. It seems to me I used to get asked a lot back then if I had a head injury. Today’s appointment was uneventful otherwise. The doctor asked the same routine questions, took a lot of notes and tested my reflexes. It’s one of the two big medical clichés (the other being the stethoscope exam) but, really, one of the few things he did was tap my knees to test my reflexes. Apparently I have a condition called Hyperreflexia which causes people in extreme cases to become place kickers in the National Football League. My case, fortunately, is not so severe.

Robb and I went back out to Coyote Hills Regional Park today. We checked on a few of my letterboxes, and learned the interesting lesson that the rare earth magnets are stronger than contact cement. I've got one letterbox missing, and I haven't decided if I'll replace it or not. I'm feeling uninspired about carving. The last time we were at this park was in April. At that time, the drive to the park was the longest we had done, and this was the first time we took the old wheelchair out for some recreational activity. Robb really wasn't able to propel his old heavy chair, so I did most of the work. The old chair also didn't have any sort of suspension or shocks, so Robb's back was sore after a rather short time on the trail. This time out, Robb was able to push his chair over most of the terrain. He still needs a little help going up steep hills, and over really bumpy areas. In some places, the easiest thing to do was to have Robbb get out and walk wh

As Robb mentioned earlier, he met with a vocational rehabilitation counselor on Friday. Although the "reforms" of the California Workers' Compensation system no longer allow for job re-training, our insurance company is providing this service, anyway. Prior to the accident, Robb worked as an actor, and in between acting jobs, he worked designing, building and painting theatrical scenery. Clearly, this kind of physical work is not what Robb will be doing anytime in the future. You need a lot of strength, stamina and endurance for this sort of work. Robb took a battery of tests, to assess all manner of skills. I have always known Robb to be something of a savant when it comes to proof reading (although we differ on writing style), and now this ability is officially documented. In addition, the counselor told Robb that in the twenty five years of giving these tests, he has never seen anyone score as well as Robb did on the abstract reasoning test. So, now that Robb has

... On Saturday, we tossed the new wheelchair in the car and headed out to Lake Temescal , a local park that we had never visited before. The staff at the park advised us that the paved path only extended halfway around the lake, and that there were stairs. But we were feeling stubborn and unwilling to accept limitations, and besides, this new wheelchair was supposed to be enable Robb to travel on trails. We circumnavigate the entire lake. Of course the joggers probably got tired of passing us, but that's too bad for them! Although it was an overcast day, lots of people were out enjoying themselves. The ducks were chomping on duckweed. A Black Crowned Night Heron was showing off his lovely toes. (I adore these big birds. They look like grumpy footballs.) The autumn influx of gigantic spiders was underway. I think these are a variety of Orb Weaver or Cross Spiders. (See the cross on their backs?) They were apparently an introduced species from Europe. The bodies of these

The other day I had an appointment with a vocational rehabilitation counselor. It was a great opportunity to get more insight into aspects of the disability safety net. One of the big revelations was, oddly, about my application for Social Security Disability Insurance (SSDI). The counselor told me that most of the time the first application barely gets anyone's attention. Nearly every applicant is turned down. I was told that someone would probably look at my application, see I was relatively young and educated, and immediately reject the application. Apparently it's not until the second or third appeal that an application is seriously reviewed with a consideration to the medical condition of the applicant. A famous example of this occured in the 1980s when Barney Clark, the recipient of the first artificial heart, applied for SSDI. While he was lying in his hospital bed on a life support machine awaiting his history-making operation, his application for benefits was den

May I take a moment to say a few things in praise of our nurse case manager, Linda? Linda was assigned to Robb's case almost immediately following the accident, and she has been a godsend to us. She helped me choose Robb's rehab hospital, which was possibly the most difficult decision I have ever made in my life. She has accompanied us to all of Robb's doctors' appointments. Linda has been our guide and interpreter through the murkiest depths of medical beaurocracy. She is unfailingly kind, incredibly tenacious and quite a hellraiser. Linda has been our knight in shining armor, willing to ride into battle with even the most stubbornly incompetent hospital administrators. And, now, alas, she is leaving our case. Thank you, Linda. We could not have made it without you.

We're thinking of you today and everyday. Happy Anniversary Mom & Dad !

Every fashionable reader of antiquated etiquette books knows that with the passing of Labor Day, the white shoes and white handbags must be put into storage, and the ermines and sables brought out. With this in mind, we wish to make a few suggestions about what paraplegics will not be wearing this fall (as modeled by the maniac author of this blog.) Custom corsetry has its place, but the well dressed paraplegic no longer desires the firm embrace of his Thoraco-Lumbar Sacral Orthosis Device. Shirts may be worn tucked in, and the fashionable patient eschews the constant wearing of a long sleeved button down shirt to coordinate with his brace. Likewise, the Air Casts which once supported ankles are no longer wanted. White after Labor Day really is a faux pas! Rugged hickory canes offer a fresh alternative to last season's four pronged models. Unfetter yourself! Abdominal binding is now a thing of the past. Walkers are tossed aside in favor of this season's fresh, light and spar

Today we decided to try something that we had been talking about for a while, combining bike riding with using the new wheelchair. Although we were not out for long, it was a blast! We went back to Middle Harbor Shoreline Park in Oakland, where we had spent last Sunday with the letterboxers. Unlike last weekend, we actually patched the hole in my tire, instead of just pumping it up and hoping for the best. The park is really amazing, because it is a beautiful natural refuge, right next to the Port of Oakland. You can amaze yourself watching the loading of gigantic shipping containers, and then you can look at tiny migratory waterfowl, like this red-necked pharalope . Which is more impressive, the journey of all the consumer goods in these huge Chinese ships? Or the journey of this robin-sized bird, from the arctic circle to the coast of Chile? I vote for the birds. Also impressive in this park are the late summer wildflowers. Verbena Clarkia Buckwheat, which doesn't look like

These are words that we're paying more attention to since Robb's accident. And so, in no particular order, here are a few recent occurrences that relate to this theme. The medical supply company that we have been dealing with (thanks to the wonderful workers' compensation insurance company) came and picked up Robb's leased wheelchair. Robb didn't expect them the day they arrived, but we are glad to be rid of that unwieldy beast of a chair. Robb has arranged to use a car service to get to his new therapists. I'm pleased because driving him to these appointments would take a big bite out of my work day. The cab drivers must love this. They pick Robb up in Oakland, drive him to Walnut Creek, and then stay on the clock (and presumably go get lunch) for an hour and a half while Robb has his therapy sessions. Robb has learned that he has access to the therapists' gym any time during business hours, so he and his therapists have decided to schedule therapy appo