All in My Head, Part Two

After another week using the head array control to steer my power chair, I think it's working pretty well, considering.

It's not as convenient or as easy to use as a joystick, if you can use a joystick. I can tell you from personal experience, though, that it's a whole lot better than trying to use a joystick if you can't use a joystick.

For the most part I've still been keeping to a speed that can be best described as 'glacial', although I prefer to think of it as 'stately.' Or perhaps 'dignified.' Getting down hallways and through doors at home and at the warehouse where I spend my days is enough of a navigational challenge for the time being.

Turns out one of the hardest things to do is go in a straight line. My chair (Permobile C300) doesn't track worth a darn anyway. With the lateral switches on the head array being either on or off, it's hard to straighten out just a little bit. Being front wheel drive, the chair has a tendency to fishtail when going downhill. I don't remember noticing it that much with a joystick, but it's really hard to control with the head array.

We've been dinking with the position of the headrest and the lateral switches. Really small adjustments can make a huge difference in how easy this thing is to use. If the side pads are in close, it's easier to turn the chair but harder to go straight. The best position for the head rest really depends on how you're sitting in the chair, which changes during the course of the day.

To respond to the comments on my last post (which I do appreciate very much even if I hardly ever respond to them directly because I'm a lazy slime weasel), using this thing does require a fair amount of head control, but not that much range of motion.

I don't need Scarecrow's help to change the speed profile. Although I can't press the buttons on the display, I've got a separate switch I can use as a kind of mode selector. That gets me to the settings menus, where I can select a different speed profile, or change the tilt, recline, etc. Navigating the settings menus and selecting options entails a series of taps on the side and back pads of the array, which is kind of awkward but not complicated. Sure beats having to ask somebody to do it for me.

Yes, I'm still learning (the hard way) that leaning my head against the head rest when the chair is on can send it crashing into walls or furniture. The dogs? Well, they're whippets. If they can't stay out of the way of a chair set to 'glacial', there's no hope for them.

I haven't taken it out in the real world much, yet. Excursions to the UW Medical Center and the optometrist went OK. I'm feeling like I'm safe enough to give it a try, but the weather has been crummy. This being Seattle, it should stop raining sometime next July.

OK, so. Mobility problems under control, for the moment. Thanks to TinMan, Cupholder v.3 is working great. My next quest is to find a hands-free way to control the cursor on my computer.

It'll be fun!

It's All in My Head

I've been using the head array control to drive my wheelchair for a couple of weeks now, and I know you're just dying to hear how it's working.

No?

OK. Most people will never need to know this. Even people with MS will probably never need to know this. I sure as heck didn't figure that I ever would. But in the unlikely event that you should go looking for information about using a head array -- what the equipment looks like, and how you use it to steer a power chair -- I can tell you from experience that there isn't much of anything out there. Besides, Herrad at Access Denied was curious about how it works and how it looks. So, here:

 

This is the head array control installed on my power chair. There is a switch installed in each of the three sections of the headrest. Touching the headrest lightly activates the switch in that section. All the rest is software.

The way my chair is currently set up, touching the center section of the headrest makes the chair go forward. Touching a side section makes the chair pivot that direction. Touching the center and a side section simultaneously makes the chair veer to that side. 

Unlike a joystick, where the distance and direction you move the stick controls where you go and how fast, each of these switches is either on or off. To change speed, reverse direction, or control other chair functions (tilt, recline, etc.), you select options from menus on a control unit.

If you could see this better, you could see that it displays battery status and whether the chair is moving or on standby (duh). It also shows which speed profile is selected, and whether the chair is going forward or backward. Each of the five speed profiles is preset to accelerate, travel, turn, and decelerate at a selected speed. To change speed, you go back to the menu and choose a different profile. The profiles are configurable, but the wheelchair tech is probably the only one who has the software to do it.

This is just one example of a head array control set up. There are head arrays with more switches, fewer switches, or different kinds of switches. Newer control units are a lot cooler, but my three-year-old chair is too old to be compatible with them. The software is pretty much totally customizable.

So what's it like to use?

It takes some getting used to. You'd expect that it takes practice to direct the chair where you want to go, and that's true. It does. And you might expect that your neck gets sore, because you're using it in unaccustomed ways. That's true too. You might even expect that you need to make sure the power is off before you rest your head on the head rest. Unfortunately, I keep forgetting to do this. And it's surprising how often you need to look at the display to see if you're going to go forward or backward. And it's surprising how often I forget to do this, too. It's not nearly as convenient or intuitive as a joystick. It seems like I'm always having to stop and dink around with a menu to change a setting.

Still, I have better control with the head array now than I have had for a long time using a joystick. Although it took forever and cost a lot, I've caught up with the Red Queen again. For a while.

Doc Ock

It might not be quite as cool as this, but it's pretty close.

TinMan (Scarecrow's senior sibling) was pretty sure he could design and build a better hands-free cupholder than the one I had. I needed something that would attach to my chair or a table, and hold a drink where I could get to it without needing to use my hands. To my surprise, there weren't a lot of commercially available devices that would do this. The closest thing I could find was a bright yellow plastic baby bottle holder that worked, kind of, but broke the first week I had it.

TinMan was all over this. Scarecrow sent him photos and measurements of my chair, and the two of them had lengthy discussions about various design and material options. He contacted the chair manufacturer (Permobile) for dimensions of possible attachment sites. He put his son, who was home from summer session for a one-week summer break, to work building it. (Sorry, Tin Jr. This was not my idea!)

It arrived Thursday, and I've got to say it's pretty cool. There are brackets to attach it to either side of my chair so it reaches around over my shoulder, and it's quick to install or remove. It can also attach to a plate that slides under the seat cushion. The gooseneck is flexible (duh), swings out of the way, and is attached to a telescoping rod for height adjustment. The cup holder part snaps onto the end of the gooseneck. Designed for use on a boat, it's self-leveling, so tilting my chair back doesn't dump the contents of the cup in my face. It's no uglier than the rest of my power chair, in fact, it kind of blends in. And it's sturdy. It may just be a cupholder, but this puts the durable in durable medical equipment.

Although in my past-tense day job I've been through lots of software development cycles, this is my first experience with hardware development so I don't know if you'd call this a prototype, or an alpha, or a beta, or what. Anyway, I expect software and hardware development are similar in that having the first example be perfect in every way would:

1. be a miracle, and
2. take all the fun out of it

So, yeah. I'm having to take back what I said about engineers being impervious to user feedback. TinMan and Scarecrow have already been modifying the attachment bracket, so installation and removal will be quicker. The gooseneck needs to be able to support more weight without sagging (hence the tasteful and stylish lightweight plastic cup in the photo, a relic of the days when Tuffy, who is now 20, could order from the kids' menu in a restaurant). The self-leveling cupholder is a brilliant idea, but it turns out, in practice, that you want more control over the position and angle of the cup than this allows. I expect this batch of fixes is only the first of many rounds of tweaks and adjustments.

But you know, for now, I can drink (from a lightweight cup) without pestering anybody for help. Scarecrow doesn't have to keep handing me my drink at meals. And the utilitarian design, far from detracting from its appeal, makes me feel like Doc Ock. How cool is that?

TinMan said he could build a better cupholder than the one I had. And he was right.

Enablers Needed

The wheelchair guy has figured out what bits I need to install a head array control on my power chair, and my insurance company has graciously granted the regal okey-dokey. My coinsurance is 20%, and they'll let me pay half now, and half at installation. So we're good, right?

So, yeah. There's that 20%, and 20% of the lift, and 20% of the lung vac... But here's the thing. 20% of a big number can still be a pretty big number. Especially if there are dollar signs attached.

And what is it going to get me? For now, I would be able to drive my monster robo-chair more-or-less safely, and adjust the seat without help. I would be able to get out of the house, without leaving a trail of devastation and chaos in my wake. At least, not all the time. That would be cool. But for how long? We would be throwing a significant chunk of change at a solution for a progressive disease. Another run with the Red Queen. If I knew I would be able to use it for a year, say, it would be easier to commit. For six months? Maybe. For only a month or two of enhanced mobility, it probably wouldn't be worth it. And, of course, there's no way to know.

it's not like I can't think of other things to do with that money besides pouring it down the MS rathole. Assuming that MS always has first priority when allocating family resources just seems wrong to me.

But it would be cool to walk through the park across the street with Scarecrow and the dogs. It would be very cool.

Gotta Want It

There have been times in my life when I knew that pursuing a particular course of action would invite ridicule, and test my capacity to endure public humiliation. Sometimes I did it anyway. If I wanted it bad enough.

An example that comes painfully to mind was competing in obedience trials with a Gordon setter. Although Gordons are lovely dogs, people looking for an obedience prospect don't typically choose one, for good reason. It's not that they're stupid. They've just been bred to have, how shall we say?, an independent turn of mind. In consequence, commands are likely to be perceived as suggestions. Instant and unquestioning obedience will never be at the top of their list of priorities. That's just the way they are. I knew that.

On top of this, the individual at the center of this story was a born clown. She was never happier than when she was the center of attention. She loved to make people laugh. You can imagine where this is going, and that's pretty much the way it went. Her interpretation of commands issued when she had the show ring all to herself were amazingly creative and, I admit, pretty darned funny, although it took me a while to appreciate the humor. She collected a devoted gallery of spectators who could be counted on to show up at ringside to see what she would come up with this time. She eventually earned an obedience title, even ranking among the top 10 Gordons in obedience in the nation that year, although it might only have been the top seven or eight, since I'm not sure there were 10 Gordons competing in obedience that year because most people know better than to try this. In the pursuit of this goal, I learned that my capacity for public humiliation is greater than I ever imagined. Gotta want it.

I don't remember when I last could pick up a cup and drink out of it like a normal person. It was that long ago. I'm almost getting used to drinking everything with a straw. Coffee, hot as well as iced. Wine. Beer. Scotch. But a straw only solves part of the problem. A drink with a straw is still no use to me unless it's sitting on a table where I can reach it by bending over (a maneuver of which I suspect Emily Post would never approve), or there's somebody to hold it for me. What I wanted was a way to drink wherever I happened to be, without having to pester anybody for help. Preferably without creating a spectacle, although I can do spectacle, if need be.

I didn't expect it to be that hard. I am not, after all, the first quadriplegic on the planet. I wasn't surprised that the bountiful array of cupholders available for walkers or wheelchairs generally assume the user can extract the cup from the holder and convey it to the user's mouth. Most people can, but that's not what I need. We could rig something with a mic stand and boom, but I was hoping to find something a little more portable. I eventually located only two commercially-available devices that would attach to my chair or a table and hold a drink where I could get to it. Only one looked like it might work for me.

This particular example of assistive technology was intended to clamp onto a stroller or crib and hold a baby bottle, hence the Fisher-Price color scheme. So much for being inconspicuous. There was no choice of color. The plastic clamp is about as sturdy as it appears in the picture, which is to say, not very. It can support maybe 12 ounces of liquid in a lightweight cup. My 16-oz double-wall stainless steel insulated coffee cup with a full load of coffee is definitely not happenin'. It's huge and bright yellow and looks like, well, like a baby bottle holder. But it works. Scarecrow can load it up and go about his business, and I can drink whenever I want. I had forgotten how cool that was. If it makes my ginormous black Robo-monster power chair look even more ridiculous than it did before, Ch. MacTyke's Heartbreaker CD showed me I can deal with worse than that. Way worse than that.

In Patrick's immortal words, "Freedom is always fashionable." You've just gotta want it.

A Chat with Your Mother

Well, I guess that went about as well as could be expected.

I talked to my mom and dad on the phone this morning. In addition to the usual status updates, I meant to have a chat about their transportation problems. After years of being able to go wherever they want whenever they want, mom can't drive, and dad shouldn't. Their public transportation options are very limited. They find this frustrating. Infuriating, even. I understand that, I really do. But they can't go taking it out on my brother and his kids, who are only trying to help. The plan was to talk about all that.

I wouldn't say the conversation was a total failure. I got an opening when my dad mentioned his visit to the ophthalmologist. Apparently his vision is not appreciably worse than it was at his previous visit, which is not saying a great deal. Apparently the ophthalmologist feels dad's vision is borderline for driving, although the DMV seems to think he can see just fine. Dad told me he only drives around home, he doesn't drive at night, he doesn't drive in the rain (not reassuring -- this is Southern California, it's a desert), he only goes "over the hill" to shop at Costco (a trip of 15 miles each way over a windy canyon road). If I was waiting for the opportune moment, this was it.

"Dad," I say, "I'm with my brother and the kids on this one. I really think you need to stop driving."

He didn't get mad. This is good, we're still talking. He didn't tell me I'm an idiot, which is usually what he tells my brother. We talked about how he hates to impose on family and neighbors for rides, but acknowledged that sometimes letting people help you is a good thing for both of you. We talked about his trip to the doctor yesterday, taking dial-a-ride on the way in and the bus on the way home. It was a nice day, the trip went mostly as planned, and cost $.35. We talked about using the power scooter he bought for my mother to get to and from the bus stop, and about taking the scooter on the bus. He hadn't thought of that, and sounded intrigued by the possibility. The upshot of the conversation was that he said, in the nicest possible way, something like "I know what you think. Thanks for your concern." All in all, I am not feeling like I accomplished a great deal.

My conversation with my mother was even less helpful. When I brought up her problems getting around, she said she'd let me talk to dad about that. When I said it sounded like it was a real problem for her, she said she'd let me talk to dad about it. OK fine. I know this whole situation really makes you mad. But Ma, you've got to stop taking it out on my brother and the kids. They're just trying to help.

"How is Tuffy doing in school this quarter?"

A Chat with Your Mother. I couldn't find a clip of Peter and Lou Berryman, or Cathy Fink and Marcie Marxer, but this rendition is interesting in its own way.






A Chat With Your Mother
(Lou & Peter Berryman)

There are pirates in their fetid galleons
Daggers in their skivvies
With infected tattooed fingers
On a blunderbuss or two
Signs of scurvy in their eyes
And only mermaids on their minds
It's from them I would expect to hear
The F-word, not from you

We sit down to have a chat
It's F-word this and F-word that
I can't control how you young people
Talk to one another
But I don't wanna hear you use
That F-word with your mother

And the lumberjacks from Kodiak
Vacationing in Anchorage
Enchanted with their pine tar soup
And Caribou shampoo
With seven weeks of back pay
In their aromatic woolens
It's from them I would expect to hear
The F-word, not from you

There's the militant survivalists
With Gucci bandoleros
Taking tacky khaki walkie talkies
To the rendezvous
Trading all the latest armor
Piercing ammo information
It's from them I would expect to hear
The F-word, not from you

There are jocks who think that God himself
Is drooling in the bleachers
In a cold November downpour
With a bellyful of brew
Whose entire grasp of heaven
Has a lot to do with football
It's from them I would expect to hear
The F-word, not from you

There's unsavory musicians
With their filthy pinko lyrics
Who destroy the social fabric
And enjoy it when they do
With their groupies and addictions
And poor broken-hearted parents
It's from them I would expect to hear
The F-word, not from you

Copyright Lou and Peter Berryman

Let This Be a Lesson

When my brother calls and leaves voicemail messages on two different phones, it makes me anxious. My parents are in their late 80s, with their share of health problems. My brother and his three adult kids live close enough to help out, and they do. If something bad happened to my parents, I would hear it from him first.

So when he called this morning and left messages on two phones, I figured either my dad is in the hospital again, or my mother is driving him crazy. This time, it's option two.

My mother is a very angry woman. I guess she always has been, although I didn't realize that when I was growing up. In her defense, she has had to deal with some crappy stuff the last few years. She underwent the colon cancer torture -- chemo, radiation, surgery, perhaps not in that order. Her vision has deteriorated to the point where she's virtually blind. My dad's GI problems landed him in intensive care for almost a month. Although his recovery has been remarkable, since no one expected him to live, it has been slow.

I don't know what they expected their life would be like at this age, but I'm sure this isn't it. They live in the house they bought in, I don't know, maybe 1953? At the time it was in the middle of nowhere, but now it's the 'burbs. They have always been fiercely independent, accustomed to jumping in the car and going where they want, when they want. Mom can't drive at all now, and dad shouldn't. They live right off PCH in Southern California. This is no place for an 89-year-old man with dodgy vision and reflexes to be driving, even if he has been driving it for the last 50-some years. There is not much public transportation where they live, and let's face it, even if there were, it's never as convenient as grabbing the keys and heading out the door. My brother, who has a day job by the way, has made it clear that he will happily drop everything and take them where they need to go, if they would only ask -- but they need to ask a day in advance. I don't know if transportation issues are really the most critical thing for them, or just the most obvious target, but that's what we usually hear about. Miscommunication about transportation to a doctor's appointment, when it's often not entirely clear who misunderstood whom. Some absolutely essential item forgotten on the previous day's trip to the grocery store, that can't possibly wait for my brother to bring it by after work. It's always something.

Suggestions that this is just the way it is, and it's never going to go back to the way it was before, just make them mad. That's OK. I don't see the sense in it, but if they want to be mad about things they can't change, it's OK. But they take it out on the people who are trying to help them. That's not OK.

Two things have come out of this. The first is that I'm about to have the "You Think You've Got It Bad" chat with my mother, and I'm going to win. I've never talked about my MS symptoms with my parents because, well, what would be the point? They can't fix them, it would just make them feel bad, and they have their own health problems to deal with. But Ma, if you think you are put upon because you can't grab the car keys and go get your nails done, imagine what it's like to sit at your desk with a piece of paper in front of you, and not be able to move it. My brother is doing the best he can to come up with solutions that will work for you. Don't beat him up because he can't turn back the clock.

The other thing is that I must remember not to take out my frustrations on the people who help me. I understand the temptation to do this, believe me I do. My mom is not a bad person, but she is setting me a very ugly example.

Home Alone

Scarecrow just left for the grocery store. He won't be gone long. It's only a mile away, and he's only going to pick up a couple of things. So I'm here by myself.

It's scary.

I haven't been a quadriplegic for very long, so I'm still getting used to it. Being entirely by myself, nobody within hollering distance, is probably a bad idea. Since I'm very good at imagining, I can imagine all kinds of things that might happen that would require opening doors, or pulling plugs, or turning knobs, or pushing buttons, or calling 911, or, oh, I don't know, anything. None of which I can do. None of these dire circumstances are very likely, I know, but still.

I don't like this. I always liked being by myself. I got testy and unpleasant if I had to be around other people all the time. I do not like being entirely dependent on another person, to an extent I never could have imagined.

Oh never mind. He's back. I know we need to make provision for times like this, I know I know I know. I know we need to get some respite time for Scarecrow. I know we do. Tomorrow for sure. I'll think about that tomorrow.