A Purple Bedroom

Tuffy moved into her new bedroom last night. It isn't new exactly, because it's mostly in the same place it was before, but it was shuffled around, losing space to one closet and taking some from two others.

And painted purple, and a color I would have to describe as dark toothpaste. But she likes it, and she has promised to paint it again before she moves out. She's almost 20; how much longer will she be living at home, do you think?

When we get home tonight, I expect they will have ripped into what used to be the master bedroom. The last step in this interminable remodel will be replacing one window with two, and turning a small-ish bedroom into a very small but accessible office.

So, after 10 months, we've got:

• A carport we can get into with the van, even when the power chair is loaded. Before, the van would bottom out at the break between the steep driveway and the level carport. If I wanted to go anywhere, Scarecrow would move the van to the bottom of the driveway, I'd go down the driveway in the chair, and we'd load the chair in the van at the bottom of the hill. Rain -- this is Seattle, remember -- or shine. Coming home we'd do the reverse. I do not miss this procedure even a little bit.
  
• A ramp to the front door, instead of two concrete steps.
• A front door with a minimal threshold, that opens to the center of the room. I used to have to negotiate a very lumpy threshold and immediately make a 90° turn (usually with the assistance of two dogs who were very happy to have us home) to avoid running directly into a wall.
• An on-demand hot water heater. With an adolescent daughter, never running out of hot water is not necessarily a good thing. It was a trade-off. We needed the space.
• A generously wide pocket door between the hall and the new master bedroom. I can even go through at a slight angle.
  
• An accessible bathroom, about which I have gone on at great length before. The novelty has not even begun to wear off.
  

The last step will be turning the space that's left into a very small office, since there's not enough to even pretend to be a bedroom. That's where we're at. So close...

A Chat With The Red Queen

"Well, in our country," said Alice, still panting a little, "you'd generally get to somewhere else - if you run very fast for a long time, as we've been doing."

"A slow sort of country!" said the Queen. "Now, here, you see, it takes all the running you can do, to keep in the same place."

Lewis Carroll
Through the Looking-Glass

I love adaptive technology. I really do. I love all the gadgets and machines and doodads and software. I don't like needing them, understand, but I love messing with them. And when I do need them, I'm lucky they exist and that I have access to them. I know that. But I still feel a lot like the Red Queen. In using adaptive technology to try to keep up with a progressive disability, I'm running as fast as I can just to stay in the same place.

As I found it harder and harder to haul my sorry butt from one place to another, I went from using a hiking stick as a hiking stick, to using a hiking stick as a cane, to using forearm crutches, to a manual wheelchair, to a power scooter, to a massive shiny black power wheelchair the size of a small subdivision that can, if required, drive up a tree. Not that I have much call to do that, but you get my drift.

A few months ago I was having trouble using the joystick to control my chair without leaving devastation and personal injury lawsuits in my wake. So, fine. Assistive technology to the rescue. The original control module has a garden-variety joystick and seven buttons, four of which actually work, two of which I actually use. I try out a couple of alternative joystick-like devices, find one that seems like it will work a little better for me, and add a couple of micro-switches so I can turn my chair on and change modes by just bonking them with the side of my fist. $1500 later, the people and property in my immediate vicinity are considerably safer.

Now, a couple of months later, my chair is starting to go unpredictable places again. Time, already, for another run with the Red Queen.

Every time I find that my previous assistive technology is no longer doing the job, I wonder how long I will be able to use the next ridiculously expensive device. I feel very selfish to be spending all this money on myself. With a kid in college and the adjustment to disability income, we could easily find other uses for it.

That's just the race for a mobility solution. For me, there's a whole 'nother race for a way to use the computer, and another to do pretty much anything else you normally do with your hands or arms or legs. Other people are running different races; maybe trying to keep up with deteriorating vision, or a bladder that behaves badly, or an unreliable short-term memory.

Every time I come up with a new problem, I fantasize that someone has already invented a magic solution. After all, I can't be the first person to have this problem. Thus far, there usually has been a solution available. There might even be a dozen of them. That's not to say there's one that will work for me the way I hope it will.

What I can do, and what I need to do, is different from anybody else, so a solution that will work really well for me (and Scarecrow) is different too. Sometimes the best solutions, for us, are ones we stumble across ourselves. For example, the finger-impaired among us can buy a gadget that straps to your hand to poke the keys on the computer keyboard. Since we probably also have trouble turning the pages of a book, there are several devices on the market of different design (and price tag) that will do that.

I use the eraser end of an unsharpened pencil, myself. I prefer an octagon shaped cedar wood casing, for aesthetic reasons, but there is room for personal expression here. You can even, in a pinch, use a pencil that someone has thoughtlessly sharpened, but be careful about using it to scratch your nose. It's really the eraser end that's the functional bit. An eraser that's been sitting around long enough to be oxidized and hard works best for poking keys on a keyboard, because it doesn't fall apart and leave crumbs. A new eraser that's soft and kind of grippy works best for turning pages.

There you go. My favorite home-grown assistive device. Scarecrow bought six 12-packs several years ago from Costco (I have no idea why) for less than eight bucks. We still have at least 5 3/4 12-packs left. In my race with the Red Queen, an unsharpened wood pencil still works for me where several more elaborate, and far more expensive, devices have been left in the dust. Gotta like it.

So, the eraser end of a wood pencil is my favorite home-grown assistive device. What's yours?

This Is Not a Rant

I'm not going to rant today. Well, maybe I am. A little bit.

I finally opened the envelope from the long-term disability company. It did indeed have a many-page form asking me to explain why I think I'm disabled, and why I don't think I'll be getting better anytime soon. It's like déjà vu all over again. Didn't I already submit all this information for the short-term disability claim? It's the same company, fer Pete's sake. Don't these people have a photocopier?

They say my neurologist didn't fill out the form they faxed to her, either, and they want me to bug her about it. Hello? It's exactly the same form she filled out, for the same company, about the same person with the same condition, a month ago. No wonder physicians feel like they're inundated with paperwork.

But I'm not going to rant. It's Friday. If it's a gloomy, wet weekend, which it looks like it will be, Scarecrow can build a fire, we'll have a single malt scotch, and listen to The Swing Years And Beyond on NPR. If you had told me, when I was 18, that I would consider this a hot Saturday night date, I'd have asked to be euthanized on the spot. Now it sounds kind of nice.

A Magic Number

Today I finally got around to going to the Social Security web site and using the magic number they sent me at the end of last month to create a new magic number which I will use for access to the web site. Really. They set me an eight digit number, which I used to create a seven digit password. One that will be easy for me to remember, but not my Social Security number, or my address, or my phone number, or the address or phone number of anybody I know, or my birthday, or the birthday of anyone in my family, or anything stupid like 1234567 or 3333333, or any of the 8 million numbers I've had to memorize in a functional member of American society. And don't write it down on a Post-it note and stick it to your monitor!

It was the highlight of my day. Hey, it's a Wednesday. The bar isn't set   very high.

I have an envelope at home from the long-term disability company. I talked to the LTD lady on the phone a couple of weeks ago, and she warned me it was coming. It's another many-page form explaining why I think I'm disabled, and why I don't think I'll be getting better anytime soon. I haven't opened it. I'm having trouble getting excited about going through all this one more time.

OK, she says (pulling up socks). One more time...

Don't Get Around Much Anymore

Scarecrow and I went to the UW volleyball game last Friday night. They beat UCLA, 3-1. We didn't go to the game on Saturday, but they beat USC (yessssss!) 3-2. They had a little more trouble with USC than generally expected, but I guess if the team that was supposed to win always won, they wouldn't have to play the game, would they?

It was nice to get out, for a change. I don't remember how long it's been since I went someplace besides the place Scarecrow works, or a doctor's office. I usually mean to go along when Scarecrow runs errands on the weekend, just for a change of scenery, but when the time rolls around I've either run out of energy, or I'm apprehensive about being able to negotiate heavy traffic in my chair without inflicting fatalities. Or I start thinking about how, if you're sitting down in a crowd, all you see are butts, and most of them aren't really all that attractive.

So it was nice to get out. Kind of overwhelming, in a way. Lots of noise (although I could have chosen something less crazy than a Pac-10 volleyball game), lots of color, lots of stuff to look at. Lots of fun.

There's a home game against Stanford in a couple of weeks. I'm in! I may even get crazy, and go to the grocery store this weekend. Or the library. Or Costco... No. Wait. Scratch that....

MS Story -- Years 17 - whenever

Picking up where I left off:

In spring 2004 my hands were numb, but even two years after the exacerbation that took them out they still seemed to be improving at a rate so gradual I wondered if it wasn't just wishful thinking. So, maybe still getting better. At least, not getting worse.

As we began to get the occasional "sun break" (a weather phenomenon apparently unique to the Pacific Northwest), a friend from work and I started going for a walk at lunch. One otherwise unremarkable day, we were coming back from an otherwise unremarkable walk when my right knee began hyperextending every time I put weight on it. Made for a very awkward gait. I glumphed back to my office. After sitting for a bit, I was OK again.

That was the top of the ski jump. Walking gradually, steadily got harder and harder. At first the problem only cropped up when I tried to walk a significant distance. I started carrying a very cool hiking stick, one with which I had hiked many pre-impairment miles, in case I had trouble getting back where I started. On one memorably humiliating occasion I was crossing a busy intersection near the office with a couple of coworkers when I lost my balance and fell. It took both of them to get my sorry butt out of the street. Can't like it.

At some point along in here, I started having real problems with fatigue. Any physical activity was just such hard work. The harder I tried, the stiffer I got. Life as isometrics.

I tried Betaseron. After every shot, I felt pretty much like crap up to about four hours before it was time for the next shot. And it wasn't making any difference. The neurologist suggested, in the nicest possible way, that it might have been more effective and had fewer side effects if I had started it earlier. Maybe so. At this point, saying I may have brought this on myself may -- or may not -- be true, but it's not particularly helpful.

I tried Novantrone. The side effects weren't too bad, the bright blue urine was kind of cool, but you've got to wonder about a drug the nurse has to wear a hazmat suit in order to administer. And it wasn't making any difference.

I tried Tysabri. No help there, either.

After a while, even standing up became an adventure. I'd be standing there, minding my own business, not doing anything in particular, and suddenly realize "Oh shit. I'm falling again." Scarecrow and Tuffy learned that a sudden loud crash no longer meant the dogs were doing something inadvisable. Now it was at least equally likely they'd need to haul me up off the floor. And repair whatever I broke on my way down.

I went from hiking stick, to forearm crutches, to a manual wheelchair with a power scooter for longer distances.

That worked as long as I could still move my hands and arms. My hands were numb, but I could still use them. Kind of. I was already so clumsy that I really don't remember when the sensory problem also became a mobility problem. Whenever it started, progression was gradual but steady. Two years ago I finally gave in to the physical therapist, who had been trying for years to get me into a power chair. Which is another whole story in itself -- one for another time.

And that's where I'm at. I can't stand or walk, I have very limited use of my arms, not much use of my hands. Fatigue is a problem. I think my cognitive processes are about the same as they ever were, which may not be saying a great deal.

So, OK. That's my MS story. Can I go back to something fun now?

Although I'm not much of a fan of spectator sports, I like Pac-10 volleyball. We might go to the UW game tonight. They're playing UCLA. It should be a good game. I'm a UCLA alum and Tuffy goes to UW, so I don't really care who wins. Or maybe we'll go tomorrow night, when they play USC. I always like to see somebody beat USC. And I'm looking forward to spending some quality time this weekend with a stack of library books. I'm part way through Narrow Dog to Carcassonne by Terry Darlington. Jim the whippet -- the narrow dog in the title -- is clearly Bareit's alter ego.

MS Story -- Years 15 - 16

Picking up where I left off, by the spring of 2002 I had had MS for at least 14 years without anything much in the way of exacerbations and no real ongoing symptoms. I had the occasional transitory sensory weirdness -- part of my tongue would seem a little bit numb, or a patch on my right forearm would feel sunburnt (in winter? in Seattle?). When I described the tongue thing to my dentist, he looked at me like I'd grown two heads. After that, I referred to these little things as my "stupid symptom of the week", and tended to keep them to myself.

Then, over the course of a couple-three weeks, I went numb from about the waist up. I could move my arms and hands just fine, I just couldn't feel anything. I couldn't tell if my fist was open or closed unless I was looking at it. Let me tell you, washing your hair is a very strange experience if you can't feel either your hands or the back of your head. Picking things up was awkward, writing with a pen or pencil was a joke, and using a keyboard was totally in the can.

I did a three day hit of steroids, which tasted yucky and turned my face red, but had no other noticeable effect.

The numbness partially remitted at a steady but glacial rate over the next two years, with no new exacerbations. I talked to the neurologist about starting one of the disease-modifying drugs, but decided not to at that point. (Not a decision made lightly, but a topic for another time.) I could use a pencil, kind of; I could use the keyboard, kind of; I could play music as well as I ever did, which is not saying a great deal. I found it hard to memorize new music, but I always did. I could still understand the bizarre things the programmers told me their software was doing. I'm not sure what that says about my cognitive processes, but it kept food on the table.

So I'm 16 years into this thing, and my hands are kind of numb. It's more disabling than you'd think, but still, not too bad, considering.

MS Story -- Years 0 - 14

Since the first thing I do when I stumble across a new MS blog is go looking for their MS back story, it only seems fair that I reciprocate by putting up my own. Here it is.

In fall of 1988, I noticed that my vision in one eye was kind of not-right, like I was looking through a piece of unevenly smoked glass. Not bad, just curious. Since I hadn't had my eyes checked in forever I went to see an opthalmologist. Dr. Mordis. No shit. Med school must've been hell for this guy. Anyway, I got the usual routine, and something I've since learned is a visual field test. He says I've got optic neuritis, which means "something wrong with the optic nerve." They don't know what causes it, he says, but it usually goes away on its own. Good enough for me. It did, so I didn't give it another thought.

For seven years.

In 1995 we arrived in Seattle after driving from Lansing, Michigan. I walked the dogs, grabbed a book, and headed for the hotel hot tub, but after a few minutes I was having trouble seeing the print. Weird. It was just like that time I had optic neuritis. After I got out and cooled off it went away, so I didn't give it another thought. (Yeah, I know. I know now. I didn't know then.)

In fall of 1996, I went to an oral surgeon to have some wisdom teeth removed. The pre-op questionnaire asked about history of neurological weirdness, so I checked optic neuritis. The surgeon asked when it had last occurred. I told him I had it right then. Since it was barely noticeable and would go away on its own, I hadn't thought to do anything about it. He suggested I have it checked out. In the hope that a neurologist would provide me with an excuse not to yank my wisdom teeth, I made an appointment.

I also, finally, googled "optic neuritis." Imagine my amazement, confusion, and dismay to find it generally buried in a discussion of multiple sclerosis. WTF?

I remember going home and working on Tuffy's halloween costume. Aladdin was big that year, and she dressed up as Jasmine. It was grab-the-insulin cute.

What with appointments with a neurologist, an ophthalmologist, scheduling an MRI, and back to the neurologist again, it was spring of 1997 before I finally got a diagnosis. The neurologist said it was "a textbook case of MS", whatever that is. And he saw no reason not to have the wisdom teeth out.

And that was pretty much it, up to the spring of 2002. Two incidents that I hesitate to call exacerbations, because they were barely noticeable. No disease-modifying drugs -- I don't think they were even in clinical trials at the beginning of the story. The first 14 years were a piece of cake. If the first 10 years is predictive of the course your MS will take, I'm lookin' good.

The Person I Used to Be

When I'm perusing all the amazing MS-related blogs out there, I find I always want to start with the posts that tell me who this person is, and how they came to be the way they are.

Well, fair enough.

But before I go through the whole MS thing, let's start with where I was before. Not who I was, so much, because I think I'm still pretty much the same person. But what I used to do, when I could do stuff.

The thing I had to give up most recently was work. I did that in June. Even though I enjoyed my day job and was good at it, giving it up didn't leave me wondering who I was the way I did when I stopped being a zoologist and left academia 25 years ago. I worked as a tech writer, but that didn't define who I was.

I used to breed and show English and Gordon setters.

Giving that up was hard, but keeping long-coated dogs meant spending several hours every weekend grooming, and I got to where I couldn't stand up long enough to get it done. An ungroomed setter starts out looking something like an unmade bed, and they go downhill from there.

Too bad. Maggie was a great editor.

Rachel was my canine alter-ego.

















I used to dance -- contra, southern squares, Morris, clogging. It's how I met Scarecrow, and I miss not being able to do it anymore.

I used to play music. I'm not a musician by any means. To borrow a phrase from a character in a book I just read, "If I can do it, it's not art." Music was more of a social activity; a bunch of people would get together and play old-timey music. It's something Scarecrow and I used to do together, he being the far more ept musician than I, and I miss it.

I used to sew, and quilt.

I used to do calligraphy. Not art (see above), but fun.

Those are all things I used to do. They're part of the person I used to be, in a way that my day job never was. In addition to being a way to spend my time, each of those activities came with a circle of friends who did the same thing. They are friends that I've drifted away from, and I miss them more than anything.

The Taste of Plaster Dust

Insulation... sheetrock... mud... plaster dust everywhere. Progress is being made, albeit at a glacial rate, on our remodeling project.

We leave in the morning before the crew shows up, and they're usually gone by the time we get home in the afternoon. We wander through the house, looking for signs of activity by the construction fairies. Kind of like an Easter egg hunt only, you know, not. To be fair, it probably would've gone a lot faster if we had moved out of the house during construction. If we had known of accessible, dog-friendly housing we might have done that, but the prospect of finding such a thing was daunting, and living someplace else for however long it took would've been expensive. The contractor was willing to work around us, so if it takes a little longer, we're good with that.

So far, she says, knocking firmly on wooden skull, we got lucky with the paint colors we picked. My previous attempts involving anything other than boring off-white have been unmitigated disasters, so I was uneasy about venturing further out on the color palette. And greens are tricky. I was looking for that soft, sagey green, somewhere between, and perilously close to, toothpaste and pond slime. The wrong brown can be similarly unfortunate, but even the burlap-brown in the bathroom looks good. This is where it gets scary. I'm starting to think we could put something other than off-white in the living room, and not live to regret it. And in theory, it seems like you should be able to choose the color of your own bedroom. In practice, I wonder if it makes any difference that Tuffy's favorite color is purple.

More Pet Therapy

It doesn't seem fair to introduce one of our live-in pet therapy specialists without introducing the other.

Ernie is an 11 1/2-year-old retired racing greyhound. His registered name is MBJ's Profit, and in his youth he raced (briefly) in Colorado and Arizona. As near as I can tell he never finished better than a distant third, so perhaps "MBJ's Not For Profit" would have been a better fit.

We got Ernie when he was about three, from Greyhound Pets, Inc. We adopted our first Greyhound from this group in 1999 and have volunteered with them ever since. We've had four other greyhounds, and one long-term foster. Why yes, greyhounds do indeed make great pets, thanks for asking. GAS (Greyhound Accumulation Syndrome) can be a real problem when you're working with retired racers.

I'm trying to think of something to say about Ernie. Just saying he's perfect doesn't make him sound very interesting. He's just such an easy-going, ho-dee-do guy. He even puts up with Bareit, and that's asking a lot. (Really, aside from Bareit's fondness for sharing a dog bed, they're pretty good buddies. We call them the dog unit.)

He does have one characteristic I suppose you could consider a shortcoming. As smart as he is (and he is very smart indeed), he doesn't seem to have the neurological wiring to learn not to eat food that's left within his reach when nobody is looking. You can always tell. A greyhound that has just consumed an entire loaf of bread looks something like an anaconda that has just swallowed a goat. He can't help it. He's a fat dog stuck in a skinny dog's body.

I can relate.

Why Am I Doing This?

After I set up this blog, it took me three years to come up with something I thought would be worth writing about.

I didn't want to collect educational information about MS. It's been done very well, by people who put a lot more effort and energy into it than I ever would.

I didn't want to scare people. Most people with MS are relapsing-remitting. They have to deal with a whole mess of scary stuff, but between relapses don't have significant residual disability. Three years ago I was already secondary progressive, with a somewhat different set of issues. Not everyone with MS will wind up where I am.

I don't have any enlightening insights into life with MS, or a particularly literate way of putting my experience into words, even if I were convinced it was worth putting into words, which I'm not.

Besides, after 20-some years of writing to pay the bills, I'm dogged by the Samuel Johnson quote, "No man but a blockhead ever wrote, except for money." Writing is work, kids, not something one does for fun. I gotta have a reason.

So, OK. I finally retire from my day job. I'm about to do whatever it takes to make the transition from being employed to being retired on disability. From everything I've read, applying for Social Security Disability benefits can be quite the adventure, and approval usually takes a long time. Friends who work for Social Security might be able to explain what's going on. If nothing else, documenting the process will help me keep track of what I did, and when I did it. Maybe by the time my claim is approved, I'll find a different reason to keep doing this.

So I apply for SSDI. Three weeks later, Social Security has approved my claim for benefits. Now, tell me again, why am I doing this? All the reasons I had for not blogging are still valid, and the reason to blog is gone.

Wait...that might be a good enough reason to keep writing, right there. Sheer perversity has always been a powerful motivator for me, and has probably been the force behind most of the pivotal decisions in my life.

Apparently, it still works.

Another Letter From Social Security

Yesterday afternoon as Scarecrow was going through the mail, between the T-Mobile bill and a Netflix DVD, he mumbled something about "... disability claim approved, blah blah blah..." I assumed he was talking about my claim for short-term disability insurance, since they seem to need reassurance on a weekly basis that I'm still disabled. But no. This is from the Social Security Administration. They approved my claim for disability benefits.

The letter I got a couple of days ago about creating a password for the Social Security web site makes sense now. Unbeknownst to me, the letter  approving my claim, which I didn't expect for several more months, was already in the mail. OK. I get that part.

But wait. Could they really be talking about the claim I filed three weeks ago? Don't expect to hear for several months, they said. Your initial claim is likely to be denied, they said. I know people who have spent years in SSDI hell, trying to get legitimate claims approved. This can't possibly be right. WTF?

If it's true, I guess I'm relieved. If it's true, the long drawn out hassle for which I was braced has become the anticlimax of the millennium. But I find myself waiting for the other shoe to drop. It's never this easy. Is it?

Pet Therapy

Ever since I stumbled across MS blogdom I've been crawling around MS blogs, totally gobsmacked at the number of knowledgeable, insightful, eloquent, witty people are out there writing about life with MS. But really, it can get to be a bit much after a while, don't you think? I need to write about something else. So.

Introducing one of our live-in therapy dogs: Summit Grin and Bare It (Bareit, to his friends). Bareit is a 2 1/2-year-old whippet. We adopted him in February from his breeder, through a referral from Whippet Rescue and Placement. Lucky for us, he didn't much like dog shows.

He settled seamlessly into our pack (packs have seams? Who knew?), and doesn't seem to mind, or even notice, the pea underneath all those dog beds.

He hasn't (yet) convinced Ernie, our 11 1/2-year-old retired racing greyhound,  that sharing a bed is a good thing -- not for lack of trying.

Tuffy only had a second to snap this picture before Ernie stomped off in a huff, looking for a bed that wasn't infested with whippets. It's not a problem at night, of course, because Bareit is at the foot of our bed, under the covers. Aside from their profound difference of opinion over the bed thing, he and Ernie are really pretty good buddies.

Bareit is Scarecrow's little red and white shadow. He likes to chase a ball, adding many superfluous, high-speed laps of the yard to each retrieve. His favorite game is 'chase me', which he somehow always wins. It's been a while since he destroyed a pair of shoes or a set of ear buds, but I think we're just getting better at keeping them out of his way.

When we get bored, bad things happen.

A Gordon setter breeder I know once described her attachment to her one special heart dog by saying, "He makes me laugh." It's a magical thing. Bareit makes us laugh.