Posts Tagged ‘mobility’

For Global Voices: About wheelchairs and mobility

For everyone I met and spoke with at Global Voices Citizen Media Summit I would like to pass on some information about mobility, disability, and wheelchairs. I got a lot of questions about my wheelchair and a lot of compliments on how well I get around. Here is my FAQ with some answers that people might like to know.

My wheelchair is a type called an ultralight rigid frame. It weighs 17 pounds (8 kilos) and though I am not particularly strong, I can pick it up with one hand. The wheels come off just like a quick-release bike wheel. I can take off the wheels in about 10 seconds, fold the chair, and put it into a car or into the trunk of a taxi.

A standard hospital wheelchair can weight 40, 50, 60 pounds (18-28 kilos). They are often designed to be pushed by an able-bodied walking person. With a lighter weight wheelchair, more people can gain independence.

The major manufacturers of ultralights are :

Quickie (Mine is a Quickie Ti)

http://www.quickie-wheelchairs.com/

Ti-Lite

http://www.tilite.com/store/

Colours

http://www.colourswheelchair.com/

But, these wheelchairs can be extremely expensive.

Here are two international projects to spread the availability of light weight, durable, low cost wheelchairs:

is an open source project meant to help people across the world to set up entire factories or shops to produce low cost, very durable & rugged chairs.

http://www.whirlwindwheelchair.org/

Free Wheelchair Mission is a project to ship very, very cheap and maintainable wheelchair kits to every possible country.

http://www.freewheelchairmission.org/thewheelchair.html

Getting the right size of wheelchair is also important. But, given a choice between the wrong size in a light weight, and the right size that’s very heavy, I would take the lightweight chair.

Two good sources of information are Wheelchair Junkie forums, and Gimp Girl, a community for women with disabilities.

One more thing, to answer the other question that you all are asking me:

My hair is dyed with Special Effects Blue Velvet and Punky Color Plum. It’s been that color for about 10 years. About once a month I put a little bit more purple to keep it bright.

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DIY: Access Hacks project

For the second year in a row, I thought of the wheelchair modification and disability access projects that could and should be at Maker Faire. I’d like to make that happen next year.

At Maker Faire this year, I talked with Miguel Valenzuela, who was showing Lift Assist, a toilet lift device that can be built for $150 out of bits of PVC and junk from a hardware store, powered hydraulically from your own water system. That kind of thing costs thousands of dollars if you buy it as a medical device. If it were a DIY kit, and if it had open source plans and instructions up on the web, it could be useful to thousands of people all over the world.

So I got to thinking. Who would I even hook Miguel up with, to get his plans used? What other projects are spreading disability access devices, open source? Could things like this just be given over to an organization like Engineers Without Borders? How can they be open sourced or copylefted?

There are specific projects like Whirlwind Wheelchair International and its design for the Rough Rider chair, developed by Ralf Hotchkiss and students over many years and meant to be distributed to shops or factories or organizations in developing nations. In other words, partnership with actual manufacturers. There’s the Free Wheelchair Mission which has a kit to build wheelchairs for under $50. They seem to take donations and then ship a giant crate of wheelchair kits to somewhere in the world. Those both look great. But neither of them were for a disabled person who might want to build their own stuff.

Then I found some nifty sites like Marty’s Gearability blog, which has a DIY category for “Life with limitations and the gear that makes things work”. She has made dozens of posts on modifications she’s made for her dad, who uses a wheelchair. I especially enjoyed the how-to for a wheelchair cup holder.

I’m also somewhat familiar with Adafruit Industries and its projects like SpokePOV. What if assistive devices used something closer to this model? Rather than people patenting, and trying to sell their designs to a medical supply company, which marks it up a million times until disabled people in the U.S. can’t afford them unless they have insurance or can wait 5 years and fight a legal battle with Medicare.

I found organizations like Remap in the UK, that takes applications from individual disabled people, and hooks them up with an engineer who will build them a custom device. This I think exemplifies the well meaning but ill advised attempts to help disabled people through a “charity” model rather than through widespread empowerment. If an engineer is donating time and an invention, why not have them write up and donate the plans for whatever they are building, and post the DIY instructions for free? Then, thousands of people all over the world could build that invention for themselves.

OneSwitch, on the other hand, has the right idea. It’s a compendium of DIY electronics projects to build assistive devices. Perfect!

Meanwhile, I went looking for the latest news in open source hardware. What’s up with the Open Source Hardware License?

My own inventions for assistive devices have tended towards the creative yet slapdash use of duct tape. For example, my Duct Tape Crutch Pockets, an idea easily adaptable to small pouches for forearm crutches and canes, or to get more storage space onto your wheelchair.

My own canes and crutches that fold (with internal bungee cords) could use simple velcro closure straps to keep them folded up while they’re in my backpack or in the car. There are some ingenious ways, also, to attach canes or crutches to a wheelchair.

I have thought of, but not made, ways to extend storage space further. For example, I think that the lack of pockets in women’s clothing is a political issue. Women’s clothes are mostly designed without pockets, because of cultural pressure to look skinny, so women end up encumbered by bags and purses. If you think about how wheelchairs are made, it is interesting that they are assumed not to need storage space, cup holders, things like that. People hang little backpacks off their chairs. And there are a few custom made pouches for walkers, crutches, and wheelchairs, like this thin armrest pouch. You won’t find them in an actual wheelchair store – and rarely in a drugstore or medical supply house. Why not?

As wheelchair designs continue to evolve, I hope that manufacturers will create customizable backs and sides and seats. Nylon webbing with d-rings, sewn into the backs and under the seats of wheelchairs, would mean that custom pouches and packs could clip onto a chair. Then it would be easy to set up your chair with interchangeable bits. My laptop could go in a pouch under the seat, for example, so that it wouldn’t affect my center of gravity so drastically as it hangs off the seat back in a backpack.

I’d like to see more and more mods for chairs and canes and crutches that are just for fun. The little holes in adjustable-height, hollow metal walking canes — don’t they seem like the perfect size to stick an LED light in there?

Also, meanwhile, I had posted briefly the other day for Blogging Against Disablism Day 2008 with a list of ideas for Practical actions that will help, like smoothing out steps into a small business (ie just freaking pour some asphalt in there or build a wooden wedge even if it is not exactly to code; people do nothing, for fear of being sued, rather than spend thousands to do a to-code ramp, and I’d rather they just stuff in a slope and bolt a rail to the wall than do nothing!). After I made the list, I went looking for online instructions on how to do the things I was suggesting. What did I come up with ? Jack shit! Nothing! Nada!

So, here’s what I propose we do:

- Compile free and open source how-tos, plans, designs, etc. on Disapedia. I have made a page for DIY equipment.

- I will go and interview Hotchkiss and his class, and write up more detail on how their open source project works.

- A meeting to share access hacks and start to add to that wiki page on Disapedia.

- I’ll head up an effort to organize a really good disability/accessibility hacking booth for Maker Faire next year.

For the Access Hacks booth, I’d like to pull in:
- craft/sewing people for stuff like mobility device storage and mods with velcro and fabric
- metal working people
- electronics people (like the OneSwitch folks)
- Maybe invite Tech Shop and the Bay Area wheelchair stores to participate
- obviously, disabled crafty/makery people. I thought I could try to pull in GimpGirl and put the word out in other communities
- Flyers on how to open source your hack and make it free – license info, where to post, hook up with places like WikiHow.

This could make a super fantastic real life application for hardware/craft hacks. I would love to just hang out all weekend with a bunch of other people with disabilities and share whatever hacks we’ve already come up with. That in itself would be productive without even doing it at Maker Faire. I’d like an Access Hacks meeting around here and I wonder if people would host them elsewhere and then post tips on Disapedia. (I would like to use them rather than host a new wiki, but I’m willing to make an access hacks wiki if that’s what people would like.)

Please, leave feedback in the comments.

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Blog against Disablism: Practical actions that will help

It’s Blogging Against Disablism Day 2008!

I’ll try to say something on this later tonight, but here’s the placeholder with a link so you can go read all the great stuff people are writing now. I gotta do some work.

blogging against disablism day

***

Okay, it’s later and I’m way too tired to blog. What to say? How about some advice!

Don’t be assholes and make a million assumptions! Try to contain the details of your curiosity! Be polite! Think once in a while about how an experience might be if you had different abilities!

Be a little gentle with those of us who have varying ability. Sometimes I can walk better or worse than other times. Sometimes that’s my fault that I’m worse, sometimes it’s not; sometimes I’m better because I did something right, and other times it seems so random. So, keep your advice to yourself unless I’m asking.

Aside from thinking, and empathy, and politeness, ACT.

Is somewhere you go pointlessly inaccessible? Suggest to that business owner that they make a small improvement.

Here are some small things you could do to make a space more accessible to people with mobility issues.

* install a handrail next to steps (and ramps)
* handrail in bathroom
* smooth out that one little step at the door. don’t be telling me about building it to code. just get in there with some asphalt or cement or something and make it work.
* keep narrow hallways clear of junk and boxes (I am thinking of restaurant bathrooms)
* fix bathroom locks so people with limited dexterity or in wheelchairs can close the door
* my current pet peeve: stages. rrrrrgh. steps and a rail? portable metal ramp?
* provide seating, benches, for people who have trouble standing up in lines or waiting areas
* build accessible paths through gravelly areas
* Signs, high up, with indications of where the ramps, elevators, bathrooms, exits are.

I made a Flickr group called Inaccessible! meant for people to post photos of inaccessible places that bug them. Now, ideally, we could provide location details and contact info, and resolve to email or call around to try to get that space fixed. And for events, I think it might be helpful to document inaccessible ways of organizing space, and send the photos to the event organizers.

You don’t need to be disabled to join that group and post to the group. You don’t need to be disabled to mention a step, or a lack of handrail, to a business owner. Or even to put a rail or two in your own house or in the house of a relative who is having trouble.

Remember, you will get old someday, and you might be needing those ramps and rails and smooth paths. By the time you need them, you might have less energy to fight for them. So ask, and build, and fight, now rather than later.

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Facials! I don’t mean the dirty kind!

I think I’ve had a facial maybe 1 other time and it was one of those deals where you go “Oh, whatever” and abandon yourself and 60 bucks to the hands of fate. Salons and day spas are such a crapshoot. You know that some strangers are going to touch you for a while and some shit’s going to happen to you – but what? It is very like going to a whorehouse but for middle aged suburban ladies (as I’m sure many of you have noticed.)

So what happened to me in this huge fancy (yet cheap) new salon place in downtown Deadwood was that two women removed my socks and shoes and put me into a giant vibrating chair (see?) that also did percussion and kneading. They soaked my feet and hands. I thought the hand soaking bowls were nifty because they put smooth glass pebbles in them so your fingers don’t get bored. There was painting, and dabbing, and massaging with about 6 different kinds of scrubby stuff and lotions. They did all the dabbing and pincering of cuticles and filing early on. They pointed at the autoclaving disinfecting thing to reassure me about how modern they are & that flesh eating bacteria will not rot my fingers off my bones because of their cuticular invasions. There was hot stone massage. I noted they took the hot stones out of a crockpot. The hot stones might have been the best part, but I also liked the HOT LOTION. Dang! Then, a rather elaborate french manicure which is pale pink or clear nails with white tips. I don’t know how long thatall took. A long time.

I find that perhaps because language is a barrier, but perhaps also cultural difference of some kind, the Nail Salon ladies are alert to the slightest twitch and they overinterpret a bit. So, if you fidget, or scratch your nose, they assume no matter WHAT you say that you don’t like what they were doing and they should switch. Alas. An exaggeration of the Curse of the Just Right, where someone is massaging you, and you say “OMG, just right, don’t stop, keep doing exactly that” and they can’t HELP doing it different. Also true for sex. You might have noticed this in your own life.

For the facial part I was led back into the bowels of the building where there were candles and more mysterious Stations for things to Happen and then into a small room with more candles and all sorts of big dentists’ office looking machines. I was given a white cotton muumuu for purposes of neck and shoulder massage which made me feel nearly certain this would not be like my FIRST time I braved the “facial”. When THAT happened oh, it was awful. If you look at my skin, which I recommend you don’t, you will see I am acne-ridden, greasy, and dry-skinned all once. There are blackheads and whiteheads and sort of looming way underneath lurking incipient zits that cannot be stopped but are lined up on a zit conveyer belt waiting for their turn. So in the historic facial of days of yore, some lady whose language I did not speak *squeezed my zits* and sort of eviscerated them with a tiny post-hole digger. It was wildly painful. Afterwards my face was all raw. So anyway, THIS time was awesome. The dental machine turned out to be a high tech Vaporizer which gently puffed warm, perfect steamy air onto my face. A hot towel was wrapped around my head and then infinite strange hot faceclothings and more dabbing and scrubbing and face massage happened. IN between every stage I got hot towelled again. I lost count. First there was coarse grained scrubbing and then a towel. Then fine grained scrubbiness. Towel. Lotiony stuff. Towel. Tingly stuff. A sort of Mask thing which dried as I fell half asleep deliciously to some horrible new age flute music and a botched rendition on guitars of that one Satie piece that they always play in arty movies. Some shoulder and neck rubbing happened while I was lying there on my back with a warm fuzzy blanket over me. There was a point where there was tiny karate-chop percussive massaging all over my face, my sinuses, jaws, much better than you’d think.

So that was pretty awesome. My face does not feel or appear magically different — the point is more the hour of face massage. I don’t really care about the nail polish either (though it is rather splendid) since I will ruin it by tonight, but the good news on that front is whatever they use for polish does not asphyxiate me or them.

The bad part was they were flipping out the whole time about my crippledness (which they didn’t the first time I went there! dammit!) and just could not grasp that I could walk okay. Like, I walked in. With my backpack and crutches. And they saw me walk a little without the crutches. But, they would grab onto my arms while I was walking, or try to lift me up sort of from a chair — unbelieveable — and I had to explain 5 times that no one had dropped me off, Yes I could drive, no I did not have a special car for handicapped people — Yes I could work the pedals — no, no one was coming to get me — this from people who were looking at my feet and watching them move for an hour and a half and I repeat, who saw me walk in and walk around their salon. (My guess is that much like it was in China, Vietnam must not quite be there with popular awareness of ideas of independent living, despite some evidence to the contrary. I dealt with this as if quaaludes were my compass and anchor with a mild half-smile and eventually all the questions stopped as I dozed and sank into the awesome vibrating throne chair and let myself be buffed and squashed and oiled like a motherfucking empress of rome.

Rook drove to M4rin to pick up his mum from her spirituality Retreat & thence to the Assploratorium. They are on their way back. My plan is to feed them soup and hope to god my mom in law goes to bed early after her exhausting day. Armed with my 3 hours of hand, face, and foot massage and new age music I have another plan, which is, ANY time she brings up any crappy health thing or says anything that pisses me off I will Change the subject and ask her what her plan is for when she begins to lose mobility in her 4 story house that has stairs to get in the door, and also what she will do when she can’t drive safely any more, and what her blood pressure is, and I will also regale her with stories about my mom’s parents in their assisted living with expensive round the clock aides. That ought to fix her wagon. If that fails then I will remember some errands and leave for an hour or so.

I have worked on poety translator things, submitted 2 batches of poems to places, cooked, done laundry, on top of all that!

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I will turn into a wheely snowbird

The sun today baked me into more cheerfulness and mobility. I walked and sat up a lot more. I helped a little with cleaning the hot tub (which Zond-7′s nephew Monkey MindWind did very nicely!) and I did some excellent Discardia in the kitchen with Minnie.

It was awful yesterday to realize that I had not left the house or gotten up from bed really except to take Moomin to school and pick him up. Yesterday was a low point as I could barely walk at all. I was back in the wheelchair in the house. I had some emotions around that. I felt slow, creaky, painful, weepy, spaced-out, and got into a mindset where all I could think of to do was to escape as hard as I could into thinking, reading, writing, getting out of my body. I think it was stress, and exhaustion, but mostly it was the cold, rainy weather coming back this weekend and persisting all week. Hands, toes, knees, back, and my terribly painful leg-on-fire. I laid in bed trying not to cry, and finally took some Vicodin. I can’t cope with doing all the things Moomin expects, like sitting next to him while he has his bath. (Cold, wet, stiff, bending over, unable to pay attention). But, we have both been enjoying spending extra time instead, lying in bed reading and talking about all sorts of things.

Today it was warm again, and I expanded in the sun, uncoiling myself from bed, extending in all directions… Ungrumpified.

I feel intensely grateful that I have my marvellous chair, that it is so light and small and wonderful.

This might seem odd, but I cried when I saw this:

After thinking about it for a while, I realized what it was I was feeling. I thought of my early days of Usenet and of the philosophy that “on the Internet, no one knows you’re a dog.” People would say things (and in fact, I recall writing things) about how great it was that women could hide that they were women, so that they could get treated without prejudice; it “leveled the playing field”. Oh, joy, we can all just pretend to be men – what a great solution! (Not.) And I certainly have read people saying how great it is that on the internet you don’t have to show that you are disabled. Fine… if that is what you feel like doing. But, on both counts, what I feel is a strong current of wanting to Be Myself, perhaps also an odd thing for someone writing under a (tissue-thin) veil of pseudonymity. As I cried looking at the picture of the GimpGirl community women in Second Life, I realized what I felt was pride, the sort of pride I felt at Gay Pride Parades; I was proud and filled with love for the women with the wheely avatars and the ones with white-tip canes, and the way they presented, at their self-expression. I know that most able bodied people imagine that given half a chance to present as “normal” or able like them, we would all jump at it. And they would not understand that it is just part of our concept of self and part of our reality.

In any case, I had a nice day with people, and a nice time with S. last night, and Monkey MindWind is around, but I am still a little lonely and melancholy. It is nothing against my friends but I realize I only get to hang out with other disabled people online and that is a problem. I looked for support or social groups or something last year, but never found anything. Instead, reading other disabled bloggers has been something I lean on very hard.

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Magically better: not

When earlier this month I got undiagnosed there was a wave of shock and relief. And then my brain did something like a rewrite of my projected narrative, like “And then I will just work hard and get magically better so fast everyone’s head will spin.” It cheered me up!

That hasn’t happened, and I’m starting to hit a wall where I realize I’m still in pain, and I’m not getting magically better. Going off the baclofen and Lyrica did not free me up to suddenly dance in the streets. I’m walking more, especially around the house, and can do housework with more competence. I can wheel myself about as far as I could last fall. That’s it.

I missed my appointment with the neurologist in part because of scheduling problems but in part because I just Couldn’t Deal With It. It was a relief not to think about things too much in the last few weeks.

Now what? I’m not sure.

I’m so glad I didn’t get any more injections … I’m feeling very skeptical of the trigger point and botox injection routes. The botox thing especially might not be so benign and temporary as it has been presented to me. After the injections into my spine last May, which was very horrible and painful and with lasting painful aftereffects, skepticism is my friend.

By the way! I am enjoying New Mobility magazine. Here is one glossy magazine where I read all the ads — as avidly as I read the articles. And, how fucking important and heartening to see a magazine full of other disabled people, and with bits and pieces of their complicated individual stories, not reduced to a sound bite, not over simplified. But with all the complexities of daily life, of varying pain level and ability and need for help. I noticed Kids on Wheels magazine as well and am going to suggest it to the school district and the local library. It would be very good for able bodied kids to read it and see that things are complicated… and that being disabled does not make other people alien creatures.

My legs are still cramping up or spasming; doing that thing. I don’t know what to call it! And, my foot still drags and my leg goes numb and tingly. I’m doing my stationary-bike pedaling every day a couple of times a day, again. My left upper arm is still doing that thing that I think of as the Perturbing Thing that I Have Never Felt Before. (It’s just not as constant or as bad as it was on the baclofen). My hands are still a bit messed up. Cold is painful and intense for me. I’m starting to think that extreme heat is also not so good; hot baths (that help pain on one level, because they warm me up) and hot tubbing leaves me oddly limp and in a whole different kind of pain.

By evening I’m ready to cry from pain and exhaustion, which probably means I’m pushing myself too hard, living a little too fast, not pacing myself during the day.

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PLS research project at Northwestern; gadget gossip

I’ve been immersing myself in mailing lists and bulletin boards and papers off Medline on HSP and PLS and ALS and spasticity, and neurological problems in general.

The Neuromuscular Disorders Program at Northwestern is doing a familial study for Primary Lateral Sclerosis or PLS. So me, my sister, my parents, and Rook will send them blood. They send a kit to us all and we take it to a phlebotomist and then presumably fed ex it back super quick.

Meanwhile, with all the reading I am realizing that just like things are with my legs, it’s like that for a bunch of people with PLS and their swallowing/speech. If it is PLS and not spastic paraparesis, it’s not like I’ll suddenly be unable to eat or talk but probably more intermittent or partial. So people talk about having difficulties for years, but more like having to do some occupational therapy and think carefully about swallowing, with some episodes of choking on food or drink, not like an on/off switch. That sounds grim still, but it’s comforting to hear from other people talking about their daily experiences.

Yesterday I spent mostly in bed, getting up a little around the house, in the wheelchair, then driving to SF. I went briefly into Djim’s place to drop off Moomin and so that the kids could see his very amazing rabbits with their whole set-up that’s like a rabbit castle. They liked it, and I was appreciative of being able to go in and see people even for a few minutes. Today was lovely. I woke up late-ish, could walk pretty well, drove everyone to work and school (only a few blocks so no biggie) then was able to get myself out of the car and met G. for tacos and then coffee. I just kind of wheeled up and down 24th Street taking photos in the sun, because I could. I liked the amazing hardware store there, the Workingman’s Hardware with the two super old guys surrounded by a very beautiful jumble of tools and pipes and stuff. G. gave me the update on her work and love life and I explained the confusing diagnosis stuff, mostly.

I met a guy at Ritual Roasters who had amazing interesting wheels called e-motion. They’re motorized and give a mechanical assist in whatever direction you’re pushing. They go on a regular manual wheelchair and make it every easy to maneuver. I could imagine being happy with these wheels, if I get to the point where I lose a lot of arm strength. The wheels are quite heavy, 30 pounds each, and battery life means they go for 8 miles. But as they’re quick release, you can still put the wheelchair into your car or even fold it with the wheels still on if you have an x-frame chair. It seems so much more intuitive to control a chair this way than with a joystick or steering wheel. Anyway, if I need something like this, I also think it might be far off in the future, and the technology will keep improving.

Really, it made my day to see these! The dude was so super nice to answer all my questions and to geek out with me. I seriously long for some other wheely people to hang with.

I got my super-cheap forearm crutches today, and they’re okay, easier than using 2 canes. They aren’t red like I wanted, but are a sort of gross pinky-red. Oh well. I was thinking I’ll write all over them with black sharpie and that’ll have a nice effect!

The new glittery folding crutches *might* come by Thursday but more likely, Friday or Saturday. I soooo need them for the BlogHer holiday party! ohhhh!

And my new Quickie Ti will come Dec. 18, they’re promising. I still have some regrets about not getting to try a Ti-Lite.

I stayed in the city because it was so sunny and beautiful… though I had meant to go home and go back to bed. My legs were painful but not impossible — I think the baclofen is helping. I upped it to 5mg, still below the dose they said to start on. It’s tempting to take it in the morning too. Either it wears off by the end of the day, or I just get tired (whether I stay in bed or not) and my legs are more spastic. The cramps in my calves, shins, and feet seem stronger than I’ve been used to. I think back and try to remember if it was this bad. Sometimes, yes it was, and I took a lot of very hot baths. My right leg being like this is I think what used to make my knee hurt and collapse – the muscles or tendons right next to my knee were spasming and very tight, and my knee wouldn’t work right. On the right side it is all about the ankle right now. When I think of wearing an ankle brace it sound soothing and nice, like it might keep my foot from hurting and dragging.

I still hope it’s HSP but I don’t see how anyone’s going to tell. Half the people on the mailing lists and BBSes seem to think their diagnosis is PLS when their doctor thinks it’s SP, and vice versa. It’s interesting how on all these medical net sites people identify themselves with their diagnosis – dx and date of dx. My date of dx is this year, though I’ve been living with whatever this is since at least 1993. So, people ID themselves with that date, which has the effect of giving them a certain authority of long experience and the assumption they must know a fair bit about all the research and symptom treatment & adaptations in life. The further back dates are hopeful as well, for me, so it’s nice to see someone posting “DX-ed with PLS in 1988″ since 20 years later they’re still having a nice life and posting long thoughtful emails to listservs.

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Diagnosis takes forEVER

My mood is fluctuating a lot as I deal with pain and weirdly variable ability levels. Sometimes I get up from bed and go “Ooo, I can walk to the other room and can do the laundry and stuff!” and then I wonder if other times I have just mis-read everything, or made it all up, or am completely bonkers. But no, pretty rapidly my leg starts to hurt like fuck again and I have to lie down. I’m still at about a 6.0 – 7.0 on the Kurtzke Scale.

Both legs are giving me trouble but the right leg is so much worse that I mostly focus on that.

Realizing that a large part of the pain is spasticity continues to be very helpful. Warmth helps a lot. If I keep my feet and legs very warm – under electric blanket, or in 2 pairs of long underwear and in my furry mukluks, then a giant chain of painful spasms is less likely to happen.

furry mukluks

This also explains some things from Physical Therapies Past. When the therapist would do passive stretching and traction and it felt great, we both interpreted it as taking pressure off the spine. But the machine to do spine traction alone didn’t help and in fact drove me nuts because i had to lie still and sort of strapped down and my legs hurt. I have been getting people to do more passive stretching along with a little massage. That helps. I find that after a bit of stretching if I just lie there without moving my leg at all, it stays quiet. If I stay in bed especially on my left side, then I can get up and walk around and the spasms aren’t so bad. (Until they just are again, and I don’t know why.)

So my PT was mostly about trying to make my muscles stronger, but they are already hellishly strong and also they aren’t paralyzed. Instead they spasm so hard that they hurt, and then I have trouble moving because they’re stiff and spasming and they resist. And moving in one direction to stretch one set hurts the other side that’s contracting. Something like that, I guess. And the PT I need to be having would be about trying to reduce muscle tone – not to improve it.

In short my usual feeling that I could do ANYTHING is probably true. I could run from a bear… or kick your ass… but then I’d fall over afterwards and pay some hideous consequences.

I had another MRI today, this time of my thoracic spine. I think the point of this one is to double triple check that I don’t have some kind of giant spine problem or tumor in there. My neck had some problems at C4-5, C5-6, and C6-7 (herniated discs and other stuff, but relatively minor). Especially at C4-5 where there is a bulge and some degeneration and moderate foraminal stenosis. That is the sort of stuff they expected to see in my lumbar spine, but didn’t. So, that stuff could explain the problems in my arms and hands and neck, I guess. But again those problems are like nothing compared to my leg, obviously…

It is the difference between “ow, my neck is bothering me a little” and “holy fuck I can’t walk and want to cry and am sort of thrashing around constantly from pain”.

Anyway, just now I took 2.5 mg of baclofen. I am very happy the 10mg tablets come in bitable form, so I can try a very low dose.

I found a usefully metaphor-laden description of spasticity though it is mostly for CP patients, it seems quite useful and helps me understand a bit. I figure I’ll research nerves, muscles, and this GABA stuff and write up whatever I figure out in a little report so I can be sure that I understand it clearly.

What these dudes say about low dose oral baclofen sounds sensible and non-scary to me. So that’s what I’m going to try. I’ll start with 2.5mg of baclofen once a day in the evening. Well, today at 5:30 because I was a bit desperate. I’ll try it for as long as I can deal with it, and see if that has any effect.

Right now I just feel a tiny bit more cheery and relaxed. My leg does feel less tight. As I try to move around it feels odd. That’s all I can say. Maybe a bath will help…

Here’s another random link to a description of PLS.

The disorder usually begins in the legs but can begin in the upper body or bulbar (speech and swallowing) muscles. The age of onset is generally between 35 and 66 years of age, with a median age of 50.

The incidence rate for PLS is difficult to determine. One study puts it at 500 individuals in the United States. However, many researchers feel this is an underestimate and the actual incident rate is closer to 2,000. The issue is further complicated by the fact that a good portion of people initially diagnosed with PLS actually have HSP or ALS. Most researchers indicate waiting about five years to observe symptom development before being confident of the diagnosis.

Note that bit about the five years to really know what you’re talking about with the diagnosis. Grrrrrreat. I know I have to get used to being vaguely diagnosed. I ride with it okay sometimes, and then have moments where it’s very hard. I just want to know… WHAT IS IT!

This part kind of made me laugh. Emotional lability, much?

Other symptoms that commonly occur include hyperactive reflexes, muscle spasms, presence of Babinkski’s signs, muscles spasms and pain. Some individuals report having emotional lability.

Dammit, don’t tell me I’m a neurotic poet because of this weird neurological condition! I’m just a neurotic poet! And I just laugh all the time when I’m mad or frustrated because, uh…

Oh well.

Emotional incontinence! Really… it’s funny…

How handy for explaining why I’m cracking up at bad poetry readings or meetings at work. No, really, officer! It’s my rare neurological disorder!

It could just be spastic paraplegia of some kind, maybe the wonderfully-named “Apparently Sporadic Spastic Paraplegia”. I could be a mutant!

This part is also quite true for me:

Many people find the tightness in their muscles worsens when they are angry, stressed, or upset. This may make it more difficult to walk and speak. It is unknown exactly how emotions affect muscle tone, but it may involve adrenalin levels. Most people also report increased stiffness in cold weather.

And about the uncertainty of diagnosis, this bit sums it all up very well:

Muscle spasticity and weakness can also be caused by other conditions including (but not limited to) Primary Lateral Sclerosis, spinal cord injury or tumors, cerebral palsy, multiple sclerosis, amyotrophic lateral sclerosis, vitamin absorption, and thoracic spine herniated disks.

Thus the MRI of my thoracic spine, where you’d think that any of my doctors would have started. My neuromancer thinks MS is unlikely & same with ALS because I would probably have more muscle atrophy or wasting. But neither of those are for sure ruled out.

Since it’s the same thing (from the feel of it) as it was from approx. 92-99, it seems doubtful that it’s ALS… since I’m not dead of pneumonia:

Upper motor neuron degeneration causes muscle spasticity and weakness in the voluntary muscles. It is disabling, but not terminal. Lower motor neuron degeneration causes muscle wasting, which eventually affects the respiratory system and leads to death.

That’s a comfort.

Meanwhile, life is pretty sweet. I get frustrated, especially with pain and times when mobility is hard, as well as with my usual state of fury with myself that I’m not productive enough. I’m driving (we’ll see, on the baclofen) and am spending most of my time in Deadwood City, but about 1-2 nights a week in SF with Zond-7. I spend most of the day in bed, getting up for small forays about the house. On a good day I do some light housework. (I can assess how mobile I am based on laundry: am I doing laundry at all? from the wheelchair? can I stand up to get stuff out of the dryer or do I have to ask for help for that part?) Other people are often in bed with me with computers or books, which is cosy. (Rook just brought me potstickers with sauce and some cranberry-grape juice laced with pomegranate! thanks Rook!) Periodically I beg for stretching or massages or I burst into tears and begin whining, but I am just as likely to be giggling, flirting, all on fire with ideas or cussing at some feminist controversy on the net or writing like a maniac or devouring a fabulous science fiction novel. This last week I’ve been able to drive, and if i can park *right* outside of a place then I can crutch in, say, to a restaurant, though I have to be sure I don’t have to stand up waiting or ordering and also that I won’t be wandering around looking for the bathroom. So mostly I stick to the wheelchair. Wheeling in the house is easier, but I’m doing some walking on crutches, cane, or just plain legs on the theory that it might help and if I can, I should, even if it hurts.

I need support from somewhere other than all you fuckin’ walkies, nice as you are. So I’m going to go lurk on PLS-Friends and the PLS corner on ALS Forums.

Mostly I’m clinging to the thought that I’m a mutant and have mere spastic paraplegia (SP) or Apparent Sporadic Spasticity (ASS) (no, not really; they made it ASSP, but I’m not fooled by that lame acronym-fu). That would explain where I’m at now, while warding off the scary future-swallowing-speaking-and-arm involvement. Maybe I’ll just make up my mind to believe that I’ve got ASS.

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Diagnosis, sort of

I’d like to just give the short version for now and more diagnosing process will happen later.

I went to a neurologist. Dr. Capybara said I am obvious mid to high spinal cord injury, incomplete and high functioning. Whether it is the old car accident that did some bruising or compression, and it has been periodically aggravated, or whether it is some weird syndrome or degenerative thing, they will tell later, and also more precision about the level, but maybe c6 or upper thoracic, and it is also not necessarily pinpointable like that but is more complicated. So other doctors and ortho people were looking at my lumbar spine and sciatic nerve root and discs and not seeing anything and also noticing that my right leg has amazing muscle tone, and them figuring if i have a disc thing or muscle/ligament injury like a back sprain, I am not getting better fast enough which is somehow my fault. (And they’d do things like reflexes and poking me, and act like I was overreacting and faking pain.) But my leg has (legs have) amazing muscle tone and often so much pain, because they are spastic. As in spasticity. Like, not under my voluntary control. Also, the stuff with my arms that only acts up now and then, is not like RSI or some sort of separate neck thing that flares up, it is the same spinal cord injury. Or lesion. Or whatever it is. Maybe it is MS but maybe not. Whatever.

My assignment is to take these seizure meds at a low dose at night and then increase them slightly every week, and see if that helps the pain. Also I can have baclofen which (unlike regular muscle relaxants) might actually work.

How kind of the neurologist to gently take off my socks for me, completely understanding, and to then put them back on. And to believe in how bad my pain is.

Cold is so bad, mostly because of spasticity. But for years people kept just running blood tests on me and saying I don’t have arthritis so, the pain was… I dunno, just in my head? Or that I should exercise more.

This diagnosis, imprecise as it is, puts a different spin or frame on everything for me. Instead of being sort of a malingerer who doesn’t get better fast enough, I am something like a C6 incomplete para with very high functioning, who got better amazingly and slowly over time.

There is some backstory here:

2007: Day of things breaking This year’s flareup begins, stutteringly
2007: Sciatica pwned! more beginnings of this year, my hopeful feelings
2006: a little babbling while the drugs last In pain, I write a letter to my body, and photograph my uncooperative legs
2006: a little whining about my legs A bit of a flareup in 2006, pain and spasticity
2006: in which I pass the evils of capitalism across generations I describe a flareup in Feb. 2006 and remember the bad times
2006: Now with flames I muse upon my secret past as disabled person (expanded upon in comments)
2005: walkies One of those moments when I was feeling the pain and weakness and getting scared
2005: dyke march report – In which I march on legs, and reminisce about times past, and run into Joi who is also intermittently disabled
2004: giant pathetic rant from 1994 I transcribed a journal entry from a 1994 notebook, interesting
2004: Not at all meaning to be mysterious the story again including the car accident, concussion, original neck/shoulder/arm immobility (worst pain of my life, threw up and passed out), asthma, and degeneration sequence in 1989-1990.

(from 1989) I keep getting worse and worse shoulder and low back problems: same thing, I sneeze, or bend over to tie my shoe, and suddenly I’m sort of frozen in one position and can’t move and am gray and sweating with pain. The doctor gets more and more frowny. X-rays never say anything significant.

I remember these times, which haunt me,

I could no longer raise my arm above my head. Who knows… All sorts of badness then happened… My shoulder got better but my back and leg got worse and then the other leg started just collapsing under me. I would take a step and the leg would just buckle. No idea there. I lost my job.

After collapsing on the campus of DeAnza I ended up in Valley M3dical Center being kicked around from department to department having conversations like this: “I can’t walk, what am I supposed to do? My legs don’t work.” “They look normal on the MRI and the xray. Without a diagnosis, we can’t give you a wheelchair. You can’t get a diagnosis until you see neurology and they don’t have appointments and won’t talk with you until 9 months from now.” “But I CAN’T WALK.”

More detailed backstory, in a coherent narrative, with photos:

*Moody retrospective In which I start to tell the story of wheelchair, crutches, cane, walking and all those fluctuations. With photo of me rollerskating naked down Market Street in 92. I forget, often, that in 90-91 I often couldn’t walk, and doctors were telling me it was because of “referred pain” from pelvic inflammatory disease that mysteriously they could never find any evidence of, or because of internal adhesions and scarring. 1991 was the days of peeing in a bucket because I couldn’t get to the bathroom, and not knowing why, and welfare hospitals who treated me like I was a junkie seeking pain meds. 1990 was when I couldn’t ride my bike anymore, and couldn’t get to work, and many other disastrous things happened.
* Scrabble in the park How I saw mountains for the first time, and hobbled to Vernal Falls. Some horror stories of bad diagnosing from welfare hospital doctors. How bad the pain can get, trying to hold myself up with arms off the seat in the car, because of the vibrations. The feeling I have had for the years of non-disabilty, of effort and bravery and fear.
* Ms. Muscle How I stole a wheelchair.
* Between the post office and cafe Depths of the hard times, 1992 or 93, pain and disability level much worse than I am now. In which going to the cafe, or walking to the mailbox, was the highlight of my day. A lot of days on the porch wrapped in blankets, eating pot pies. I encounter people’s strange, rude, reactions to visible disability.
* All dressed up with someplace to go – babydyke badger with wheelchair, 93-94ish, going to parties and being a wild child no matter what
* Santa Cruz Mountains – 1994-ish. In which I treat my cane as a punk rock fashion accessory
* Growing out my hair – In which I could mostly walk, but sometimes wheelchair. Handrails and bathrooms explained.
* Cactus Club In which I get better slowly in 1996, onward, give away my wheelchair in 97, and limp for years. And then got pregnant 3 times and had Moomin. 2001 onwards, occasional winters on and off crutches.

I think of all the years that I had to explain things at work like why I needed to lie down under my desk, and just get horizontal; or why it was sometimes hard for me to walk across campus and sometimes not. I think of all the countless hours Rook massaged my legs, or that I had to lie down during our role playing games. All that time Rook always accepted me and without question helped me manage pain, ran me hot baths, sometimes would rub my feet for *hours* while gaming or while he watched TV. I worked hard on my own, but he got me through so much of it. All the times when for months I would manage a day, barely, but would come home from work and go to bed at 6pm, and he would deal with all the rest of our life and practical things. (Even when I was “not disabled” these last 7 or 8 years, this would happen.) All the times I was in university classes and would lie down on the floor to take notes and people acted like I was a freak. And I would just have to say, “Well, I have to.”

All the years when I couldn’t explain very well.

It is killing me a bit to think all that time, I was fighting a spinal cord injury, which if it were diagnosed, I would have had a lot of help, and real rehab.

As anyone knows who has not had a diagnosis and then gets one, it is a relief to have an explanation to give. No matter how scary the diagnosis.

I do (as always) feel proud of my years of struggle to get better, and I always respect the hard work that took. In job interviews where they ask what, outside of work, are you most proud of as an achievement, I always say “I was in a wheelchair and used a cane for most of the 90s, and got out of it.”

That sounds wrong in some ways because there is nothing wrong with using the wheelchair. But I am proud that I basically managed my own rehab, consistently, for years.

This post is longer than I meant it to be. I am having trouble processing all of this.

I trust that I will get back to where I was at the beginning of last week, and will be walking with almost normal gait for a block or two, and not constant pain. That is my goal. If I can get from Zond-7′s house to the cafe, and from my house to Hole Foods, then I will be very happy with that level of ability. And then from there I will set my goals further to walk more and more.

For now I would be happy to be able to *wheel* to the Hole Foods, but I can’t yet. I’m going to drive to work today, and ask for help, and lie down on the couch while working, to save my sitting-up time for the evening thing.

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The pure lotus in the urban wilderness

We got in a taxi, opened the laptop and pointed at an address in Chinese, with a photo of the restaurant, knowing only that it was somewhere out near the 3rd ring road to the north. The taxi driver was confused for a bit, then took off. It seemed very far away, and then further, and it was almost 10pm on Sunday night and the restaurant closed at 11, and we hadn’t called to make sure. Down a very industrial rubble-ish street right on the frontage road to the 3rd ring road the taxi driver went down a narrow alley, which dead ended. He asked another taxi driver for directions. We couldn’t understand! He pointed into the giant block of construction in progress, and let us off. At a little hotel nearby a guy came out and helped us, after much discussion in Chinese and pointing at the web page on the laptop, leading us back down the alley, through another alley full of ridges made of rebar and metal plates and enormous speed bumps to which I learned the word for “watch out!” as there were no streetlights or anything. (Zond-7 pushed my wheelchair, because my neck was hurting from idiotically playing too much nethack on the plane.) A complete maze, through concrete blocks and deserted-seeming apartments and the big walls blocking off construction and demolition. Finally we came to a corrugated iron wall cracked open slightly, held shut by a chain. Through the crack and down across a demolished building in the shadows we could see a cool pink glowing sign in a very fancy font “Pure Lotus”. For a minute I considered folding up my chair and squeezing through the crack in the wall. Our friend from the nearby hotel gestured and sighed and repeated something that must have been “Well, hell, there it is, but…!” He led us out again past the apartment block, past the defunct expensive furniture store, past the other demolitions and some parked cars behind more tiny apartment balconies with laundry hanging out, past a hole in the wall butcher shop and corner store and down the rebar-corrugated steep-sloped entrance to the alley, out to the side street, then out to the main street. He motioned for us to give it a good try from the other side of the block, around the corner, and we waved goodbye.

Zond-7 and I match very well in our love of randomness and getting lost, of being slightly unnerved but liking it that way and keeping good spirits up, and not minding if the goal does not happen or things don’t work out – we are good travel companions that way.

The sidewalk was multi-levelled and cracked, so we went in the street in the bike lane. At a break in the big construction-hiding walls (plastered with ads and Olympics posters) we dove into a dirt alley bordering on a partly demolished office tower. I wheeled over glinting mirror glass and gravel. Guys in hard hats and jumpsuits gawked at us – wondering what the hell was going on – it was after 10pm – where could we possibly be going and why – Finally, the other street. We had just cut a corner but had not really penetrated into the interior of the block. About halfway down the block there was an opening with cement trucks and what looked like an auto body shop and — once we ducked through it – A SIGN for the restaurant. A couple of twists and turns and more signs – we joked we would keep following them as they receded into the distance – we saw the empty field and the corrugated padlocked wall that we had seen from the other side of the block – and the street kept twisting and getting darker, dead-end-like. The dead end opened into a paradise of little water garden and wooden deck, carvings, an enormous door 15 feet high made of logs pivoting in the middle to swing open without a sound, and lotus holograms projected on the floor, blossoming, next to an enormous yet delicate wooden model of a buddhist temple. Interior decorator monks had waved their magic wands to create perfect spot lighting and draped fabric and rock niches with candles and brocaded seats like little thrones, more water gardens and flowers, all an impression of peaceful cool light and openness. Incredibly sexy waiters with matching monk uniforms – sort of thin slightly tattered open shirts and loose pants for the guys and elegant pale pink fluttery things for the women – Well, monks can have aesthetics too – And can be obviously young hipsters with awesome haircuts – as they gracefully hand over giant menus that are pieces of art themselves with strange-ass names like The Peace Settles and Purifies or Love Without Reason which turn out to be carrot-pineapple juice or soup with gingko nuts and lotus seed and wild yam and several kinds of odd and delicious fungus, with soup dumplings. A monk, or nun, or hipster in pink ruffled nun suit, laid out enormous leaves as placemats, with carved sticks and spoons made of giant cowrie, flower petal shaped plates, basically everything was leafy and made of wood or shell or sometimes tinfoil made to be artistically leafy. The straw to my carrot-pineapple juice was bent into a rather lovely pattern winding around yet another leaf slotted and stuck on the edge of the tall thin porcelain cup. I kept sort of jaw-dropping and becoming more and more hyperaware as I’d realize things like, the person laying out our plates was doing it carefully with one hand while doing a buddhist mudra with the other.

The soup with different kinds of gourd and squash and fungus was one of the most delicious thing I’ve ever eaten, and had a smokey flavor that sent me into a Proustian tailspin of trying to remember what smell or childhood taste it evoked. Nothing I could name, but it was a little like the smell of the ocean combined with wood smoke.

After we came in the enormous 15 foot high wooden door made of logs slowly pivoted shut. We were the last people into the restaurant.

Everything was so beautiful – I’m really not exaggerating – you are totally dead-souled if you eat here and don’t have a blinding epiphany. Mine was that, earlier in the day, I was having a strong feeling of impatience, railing against my problems with mobility and walking and pain, going so far as to say bitterly that I wished I could walk better and I was sick of it all, and it isn’t fair, and it used to be so easy; it was a place of strong self loathing and wanting to curl up and hide and cry. This doesn’t happen to me all that often, but it did happen yesterday; it was partly exhaustion and jet lag as well as hunger to be able to do and see more and have it all be less inconvenient, less conspicuous, less fussy and above all not painful. BUT in Pure Lotus I considered all that as I nibbled chewy vegetarian fish in spicy sauce and Zond-7 and I sappily gazed at each other as he gave me half of the last of his most perfect transparent dumplings stuffed with mushroom from his chopsticks, and of course, the obvious epiphany to have (and the one I usually try to live inside) is that everyone carries around problems and obstacles, and pain, and I’m lucky to know what mine is and to have so much awareness and enjoyment of life (and to have such an amazing nice life.) On top of that, if I can fly halfway around the world and go to a city where I don’t speak the language and can’t read anything or talk to anyone, and despite not walking very well and having a wheely exoskeleton, can still make it through broken glass and concrete rubble and smog and darkness to this odd delicious aesthetic loving nirvana which we will think of as nirvana although it is only for rich people who can afford a 50 dollar dinner, then, there is nothing to complain about in life and things are just fine.

Two of Pure Lotus’s staff got us a taxi and then came with us out the winding alley to help us in and to help us communicate with the taxi driver who was not quite sure where our hotel was. They helped stuff the wheelchair into the trunk and were so amazingly patient with our ignorance of language and everything. We so didn’t deserve such consideration. Also, I was grateful for the moments when taxi drivers, hotel staff, and our hipster monks and nuns giggled with us at the ludicrousness of the situations and language barrier and perhaps at our nerve for being in those situations.

I have a soft spot for very beautiful places carefully constructed and hidden in industrial settings (like my favorite cafe in my hometown).

Aside from that I am astonished that looking online for reviews of this place, it’s all just “best vegetarian food in Beijing” and nothing about the total amazingness of the experience.

We almost had heart attacks when after we thought we were finished (but we weren’t sure because we had no idea what the heck we ordered) they brought out what looked like an enormous hand-polished tree stump with smoke pouring out. MY GOD is it another course of food? No- it was dry ice bubbling from a tiny pool of water in the wooden bowl with a tiny stand made of the same wood inside, with tinfoil leaf (nature + artifice perfect combination) and real leaves (pandanus?) with small mandarin oranges, ripe and sweet. I was in awe.

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