Posts Tagged 'mobility impairment'

SD Training: “Bad Days” Provide Evaluation Opportunities

There’s a quote I like very much in Sue Ailsby’s books, Training Levels: Steps to Success*. It’s by Steve White:

“Failure” is just information. Thank your dog for revealing a gap in your training plan and get to work plugging it.

Taking this attitude makes me a better trainer, a happier and mellower person, and a more pleasant person for my dog and other humans to be around. Learning to actually adopt this philosophy has taken me many years. (Not that I am always able to have this perspective even now — sometimes I do get frustrated — but certainly I can see things this way much more often than I did in the past.)

This quote is in the explanation of testing. The Levels are a set of behaviors, divided into Steps, and each builds on the other. (Sort of like math, but much, much more fun.) So, before you can go to the next Step or Level, you test the one you’ve trained to make sure that you and dog are moving on with a firm foundation.

I have not been able to proceed quickly and efficiently through the Levels because I’ve been too sick, so we have done very little formal testing of Levels behavior. Instead, I have decided to focus on training these behaviors:

  • The behaviors I most need from Barnum on a day-to-day basis (service skills), and
  • The behaviors I can train most easily from bed or the toilet (or wherever I might be during the course of a day).

I’ll write more about how and why I’ve decided to focus on training like this in my upcoming post for the July Assistance Dog Blog Carnival which is being hosted by Brooke at ruled by paws. (And she will be giving a prize to one of the bloggers who submits an entry, which is another reason to go read the call for entries and write a post!)

Meanwhile, I thought I’d catch you up on how and what Barnum and I are doing by telling you about last Saturday (a week from yesterday). Saturday was a lousy day in some ways and a terrific day in others.

The lousy part was that I was in a very bad way, physically. It was probably one of the worst pain days I’ve had in a long time. It was the kind of day where I had to take several prescription painkillers in order to be able to sit up or move my limbs at all. Without pain medication I would have been reduced to lying in bed, crying, and unable to move all day. I couldn’t speak. I couldn’t brush my teeth. I needed help to eat.

It was terrific in that it was a chance to “test” where Barnum and I are in his ability (and interest) in assisting me. Here’s what I learned.

  • Barnum was very eager to work. Every time I called (using my “kissy noise,” which is how I call him when I can’t speak), he rushed over in eager anticipation of working (and thus, earning treats). Even though it was 90 degrees out, and he has a thick, black coat and hates the heat.
  • He retrieved my slippers for me about a dozen times because I take them off when I get in bed and then want them on each time I get out (even just to transfer to my chair to go to the bathroom).
  • I also learned that he seems to have learned my hand signal for “Take,” which surprised me because cues are Barnum’s weak point, and this hand signal is one I only introduced recently.
  • He opened and shut my bedroom door many times. He responds with the same level of reliability to the hand signal as to the spoken cue. With opening the door, he knows both and is eager and efficient regardless of where I am or what else is going on. With shutting the door, either he absolutely knows what I want and runs and slams the door (always if I’m out of bed and sometimes if I’m in bed). If I’m in bed, sometimes he is confident and runs to slam the door, while other times he’s unsure and requires shaping to go around the chair, get behind the door, and shut it. We are continuing to practice this one so that he becomes more certain of this behavior and cue. I still haven’t figured out the variable that makes the difference to him.
  • He picked up several things I dropped — pens, an empty saline flush syringe (no needle), dog treat bags — satisfactorily, including sometimes needing to go around my chair to get it, and then jump on my bed with it in his mouth to hand it to me.
  • He turned on and off the bathroom lights for me several times. He is very solid on turning on the light when we enter the bathroom. Exiting the bathroom, he still sometimes turns off the light and then immediately turns it back on again. So, “off” needs work.
  • He can hear me blow the dog whistle in my room when he is in the kitchen even with the water running and the vent hood on, but he doesn’t yet know the whistle means “come.” Sometimes he does, sometimes he doesn’t. We need to continue to practice the whistle as part of the “Come Game,” reteaching it from Level One Come.
  • He is completely solid on stand-stay/brace; he assisted with transfers from chair to toilet many times and with toilet to chair and bed to chair a few times.
  • He carried messages to, and went to get, two PCAs at different times. He is solid on the cue to get them, opening the door, and finding them. With one of them, he is solid on the whole behavior of open door, find person, nudge them, sit, wait to be sent back to me. With the other, he needed to be cued to nudge her on the first find. I am discovering that not all my PCAs are consistent in their responses to him — sometimes forgetting to ask for the sit or to ask “Where’s Sharon?” at the end, so I have now written up a step-by-step “how to” that they can refer to for “cold” retrieves (when we are not in an official training situation and neither Barnum nor they are primed to expect it). During a training situation, everyone already knows their jobs, but randomly using or testing this skill when neither dog nor person were prepared has given me important information on tweaking behavior for both people and dog. (You can see a video of this skill in this earlier post.)
  • He removed my socks a couple of times while I was in bed, which is a different behavior chain than removing my socks when I’m in my chair. It requires several positioning cues that are different — a lot more communication is required than for sock-removal while I’m sitting.
  • He opened and shut the refrigerator and shut cabinets and drawers. This all went very smoothly. Both cues and behaviors are well established. It tells me it’s time to start hanging pull-cords on some of the cabinets and drawers I might want him to open so we can start working on that behavior, too.
  • I realized that while he has learned most of the behavior for pulling down my big, heavy comforters, we have never worked on him pulling down my lightweight summer blankets or sheets. It would also help a lot if he could learn to help me pull off long pants. These are new items on the “to do” list.

There are probably a few other things I’m forgetting because by now it’s been a week, and I can usually only retain this type of information for a few hours. But, my overall point is that now, on a day when I really need him, he is actually helping me. We really are a team now. There are some skills he doesn’t know yet, or some situations in which he is still inconsistent, and those are more obvious to me on my “bad days,” too.

Not only do I now want to thank my dog for the information when he “fails,” but I can also thank my body on the days it “fails.” Sometimes it feels like there are three of us doing this training process: Barnum, me, and my body. The challenge is to coordinate the needs and abilities of all at once.

– Sharon, the muse of Gadget, and Barnum, home-style SD/public SDiT

*Should you want to buy the books, which I highly recommend, you can purchase the paper version here or the electronic version here.

QuickPress: Workig Dog

Today is one of those days when I woke up and couldn’t move much or speak. Here are some of the ways Barnum has helped me today.

  • Helped me take off turtleneck shirt. (New task that still needs a lot of work.)
  • Brought my PCA to me — perfectly. (Opened door, ran to her, nudged her, and led her back to me.)
  • Pulled off my socks.
  • Helped with bathroom transfers.
  • Shut bathroom door.
  • Took three messages to Betsy.
  • Pulled covers down. (Not all the way, but enough to be helpful.)
  • Opened and shut the fridge.
  • Shut bedroom door.

I think I’m forgetting some things, but the main point is that he is actually helping me now on days I need it. It’s good to be able to practice things and see what is really working and where the holes are that need further training.

Woot! Do I Have a Working Dog?

Barnum and I just had a very exciting walk!

I haven’t even been able to attempt a walk recently because I haven’t felt up to it. But I slept on and off till 4:00 PM today, so I started gathering our walk things as soon as I woke up.

I really wanted to try to go farther than we have been, despite that my outdoor chair is still in the shop, so I found my elevated leg rests for my indoor chair.  I’m hoping the walks will whomp me less the next day if I have more physical support and stability.

And . . . we’re off!

First, I took him to his toileting area, and I asked him to pee, and he did! Click!

Before we left the yard, I clipped the leash to his collar, and didn’t put on the Easy Walk Harness because I thought he’d probably generalized loose-leash walking (LLW), and we wouldn’t need it. I was right! He showed no more inclination to pull on his collar than on the harness. Click!

He was also very interested in taking cheese for clicks, which he earned for

  • being in the right position, or
  • making eye contact, or
  • being about to go too far ahead and then remembering to keep the leash loose and returning to position!

Click!

We wandered along at a sedate pace (because that’s what he’s used to; going at faster speeds makes him excited, and then he forgets what he’s supposed to be doing) with a nice loose leash. Then, when passing my neighbor’s front yard, we saw they had a very bright, dark pink, plastic thing propped up next to the road. I think it might be a toddler’s sled?

Anyway, Barnum looked at it with deep distrust. He’d never seen one of these before, and who knew what it was capable of?

So I backed us away from it until he seemed comfortable, and we watched it for a bit. I c/t for looking at it relaxedly. Then I started playing the “Look at That” game (from Control Unleashed).

I’d say, “What’s that?” and point to it, he’d look, I’d click, and he’d turn to me to take the treat. We did that a bunch, moving slowly forward.

Eventually we got close enough that he just wanted to give the whole thing a good sniff and not take any cheese, so I just clicked for sniffing. BUT, he was keeping track, because after a round of sniffing, he came back to demand cheese! I obliged of course; the click is a contract.

Since he was already sniffing it, I thought we might as well add nose targeting, so I pointed to different parts of it, saying, “Touch!” and he’d get a c/t for each.

Then we did some sits and hand targets and eye contact cues, right in front of the pink thing, and he was very happy to get c/t for all of that. I decided that the pink thing was no longer a source of anxiety, and we moved on.

We continued out LLW, including the opportunity for me to cue a poop. I have learned now that when he reaches for a treat and then wrinkles his nose and turns away, it means he has to poop. Very useful information. I can then take him to my preferred spot and cue just as he starts to circle.

Unfortunately, the bugs were terrible, attacking us both relentlessly, so I decided to speed up to try to lose them. This triggered the desire to run for Barnum, which resulted in some leash pulling, so I turned us toward home.

This was a tricky place to turn, because we had gone partway up an extremely steep hill, which also was very loose (dirt roads here, keep in mind) with gulleys and gravel from the snow and rain, so I had to go down it very slowly, with my back-rest reclined as far as possible, otherwise I could easily have tipped over. (This chair is too lightweight to safely maneuver a hill like that.)

I would not have felt safe to do that at all with the Barnum of two months ago, because I would never know when he’d pull and I’d do a face-plant into the rocky road. But he walked very slowly and deliberately next to me, while I crept along on “turtle.” Good dog!

On the way home we passed the pink thing, which was no longer an object of interest. What was an object of interest was my neighbor using his riding mower, which is the kind of fascinating sound and movement that usually plays havoc with Barnum’s focus. So, first I let him just observe for a couple of moments, and then he made eye contact. C/T!

Then we did more uncued eye contact, and I segued into cueing sits, downs(!), stand, touch, eye contact, and “chin” — the first time we’ve done chin away from home. He was game for all!

Then I decided to see if I could get him in working walk position with my two cues I use at home, “come by,” which means, “swing around on my left rear,” followed by “side,” which means, “stand next to me on my left, parallel to my chair, with your face next to my knees.” Often, at home, I can just say, “Side,” without “come by,” but I wanted to make things easy for him.

Not only did he do it — which we, again, had never done away from home before — but when I asked him for Side the second time, he actually did a BOUNCE into position, which is incredibly cute. (He leaps into the air and lands in the right spot. He bounces from a down into a stand sometimes, too, and gets serious air.) He bounces into position when he is feeling confident and happy to be training.

I really have to get these working bounces on film some time. They’re wonderful.

All this, in front of the mower driver!

Then we moved on, and a formidable opponent presented itself to us: birds! Not just one bird, but two or three small birds, scrabbling in the dust in the road and on the roadside, looking for seeds or insects. Bouncing, scratching, hopping birds!

I stopped when we were a good distance away to think about how to handle it. I backed us up, hoping to get him under threshold, which — with birds — has generally not been possible in the past. But, when we were about seven car-lengths back (that’s how I measure distance — I imagine how many cars would fit in that space, because I have no concept of feet or yards or meters, etc.), I just sat and waited for him to notice me. He looked at me, c/t.

Then I did “What’s that?” with him to get him looking back and forth between me and the birds. Two of the birds (too far away for me to identify, maybe wrens?) helped us out by flying away, so there was just a single robin left.

After we had grooved on the Look at That game, I cued eye contact and got it, and we slowly proceeded forward, with me c/t very frequently for keeping LL and for eye contact. Then, when he seemed he wanted to chase, I said, “Leave it,” which is our Zen cue, and — while he did not actually back off or look at me, which is the response I train for — he did STOP in his tracks.

The robin hopped right into the middle of the road, taunting us, the cheeky little twit, and I said, “Leave it,” again. Then, [cue clouds parting, sunbeam shining down on us, choir of angels singing] Barnum SWUNG HIS HEAD TOWARD ME AND LOOKED AT ME, INSTEAD OF THE HOPPING BIRD!!!!

I clicked and gave him about half-a-pound of cheese and squealed with delight, and other dignified dog-trainerish-type things. I told him how proud I was of him, and he waggled around a lot. It was a very nice moment. We proceeded forward, and I got to practice my zen cue with the robin a couple more times, each of which went great — because now we were on a roll, see?

Then we went into our driveway, which put us even closer — despite a few intervening trees — to my neighbor riding his mower. So, I went right up to our border so Barnum could watch, and then we did more zen, sit, touch, etc., despite the mower distraction. Very satisfying!

Inside the gate, I took off his orange safety vest and his leash, and we romped a bit, but he really was not so into it because he wanted to get inside, away from the bugs. He was way ahead of me when I saw him pick something up from the ramp and chew it. I thought it was a flower at first, but then it started crunching. I asked him to drop it, which he was not inclined to do until I reached for the cheese (still need to work on that), and when he did, I saw it was a piece of plastic flower-pot. Not edible!

He took his cheese and turned back to slurp up the shard of flower-pot. His nose was on it when I said, “Leave it,” and he backed right off of it! We really ended on a high note!

Sharon, the muse of Gadget, and Barnum, SDiT?!?!??!

P.S. Several of you have commented on recent posts, and I haven’t yet had the chance to reply. Your comments are really important to me, in some cases quite touching. I just wanted you to know that I definitely plan to respond to them.

life w/lyme, mcs, cfids: a different kind of typical atypical

for an MCS, Lymie, CFIDSer blogger training her own service dog.

i’ve been trying to post every day, partly bec i have so much to say and partly bec my stats go way up when i do, and that’s just so reinforcing!

but when u have lyme and cfids and u overdo by blogging, tweeting, posting on FB, etc., and/or train your dog, then u crash.

this is the other side of the typical atypical day coin. a typical day when i’m super super sick, which is not my typical day anymore.

today is not quite a stuck day but it’s damn close. it’s the kind of day that often follows a good day, like the ones i wrote about yesterday and the day before.

can’t get out of bed (move legs) on my own/transfer/go to bathroom, feed myself, brush teeth, etc.  also can’t speak.

this used to be my typical day, when my lyme was bad. now it’s what happens if i overdo or have chem exposures or don’t get enough sleep, and i have done some of all of that in the past week. then i way overdid it and shaved barnum down last nite w/betsy. i knew i was ovverdoing, as the pain and jelly legs and vertigo set in during and after, but the ticks have  been so bad, it needed doing and this was the only time, so i just hoped i could bounce back.

so i was long overdue for a slapdown. and here i am blogging, which i shdn’t be.

but i have a lightweight cordless keyboard in my lap, my elbows bolstered, and reclining. i can’t lift a  fork of watermelon into my mouth, but i can type.

i can’t say, “blog,” but i can type.

i’m blogging because it’s hard to be stuck in ur brain, unable to speak, surrounded by people who don’t know asl, in pain, etc. i’m blogging because i want you to know what it’s like to have these illnesses, which you never will as long as i blog because that gives a fall sense of how functional i am. the act of blogging belies that i’m too sick to blog.

but i want you to  see wha hppens on the days i don’t blog,or i do but i shdn’t. in fact, when i was writing this i kept abbrev and making typos and fixing it but i have decided now as i finish this up (have  done several sessions w/rest between,jumping around) to leave them bec its so much harder for me if i have to move my fingers off asdf  jkl;

i have already fixed so many typos, so many wrong word choices because my brain doesn’t always connect to what my fingers are typing (e.g., if i think “taller” and right “father”). it’s so hard fo rme to leave the errors — i keep fixing them! – but i want u to see the reality.

my pca fed me watermelon and my protein drink, which we did in shifts, over sevaral hours — it is exhausting bec of chewin g and swallowing, bec if she doesn’t put it right directly into my mouth w/out pausing or waiting for me to make minute stretches forward, it’s even more exhausting. and i can’t tell how to do it diff bec i can’t  talk and it’s too exhausting to try to explain bec nobody who has ever fed me has understood these nuances anyway.

and typing or swallowing or chewing gives me palpitations, makes me dizzy, makes me pant. and breathing becomes more of an effort — the diaphragm moving, the rsise and fall of chest, those are all muscles working.

this is lyme and mcs awareness, too (and  cfids, even if it’s not cfids awaereness month)  — the days when u can’t do most things at all and what u do is a huge struggle. this is so much better than what used to be a typical day, where i wdn’t be able to write this blog at all. when i couldn’t  move my hands sometimes. today i can flop them around a bit, i can click, and i can type , as long as my arms are supported.

being a lyme survivor who is also an assistance dog trainer means overdoing it to try to protect barnum and myself from ticks, from further infection, which means making myself sick, doing too much.

these reminders are good for me because last night in the glow of my overfunctioning adrenaline rush, i thought, ” i really don’t need to be teaching barnum to shut and open cupboards or the fridge or all sorts of other skills i’m planning because i’m doing so well now. but it’s better if he’s overtrained just in case.”

then, today, i needed to pee, and my pca was shopping, and i wished so much that barnum knew how to help me with transfers. and he needed to pee, and i couldn’t let him out, and i wished he knew already how to open and shut doors on cue. but not yet. so we waited 45 mins for my pca to get back.

and i ran out of toilet paper after my pca left, and i knew it was in the cupboard five feet away, but barnum doesn’t yet know how to open and retrieve things from cupboards, and there it is — skills i want to teach for the days i need them, all while hoping i never need them, some part of me believing i will never need them and some part of me remembering all the things i needed gadget to do, some of which i’d trained him for and some of which i hadn’t, when i got lyme. reminding me that i can never trust that i will never  have a day liek that (liek this) again.

he did something interesting today. my pca came in and asked him if he wanted to go for a walk, and instead of bouncing around all happy and heading right fo rthe door like usual, he just looked over at me, which was odd. and i thought, does he know i’m sick, and he’s weighing how much he wants this walk against worrying about me?

i don’t know. i could be projecting. but i’ve never seen that before. sure as heck gadget would  never have done that! but barnum is a very sensitive guy, so i’m not sure.

unfortunately, the nurse had to come today to change my dressing. we were supposed to do a blood draw, but i guess even my blood is too exhausted to move because we couldn’t get blood return.

having CFIDS means i’m too exhausted to have facial expression, so i look like i’m angry or don’t care, when really my facial muscles are too tired and weak.

having lyme means i’m in so much pain that i can’t move 90% of my body because the pain and weakness just takes away my ability to move. it’s hard to get this across:

the nurse (photos below) said, “ur in a lot of pain, huh?” and i nodded, and she said, “u haven’t taken your pain meds today?” and i moved my mask so she could read my lips and said/mouthed, “no i did take them, that’s how come i’m able to be out here” (not in bed), but i don’t know if she understood me bec sometimes when people don’t understand they just nod and act like they do bec they don’t want to make u repeat.

but i always desperately want to be heard and understood, so i signed, “understand?” but of course she doesn’t know asl, but she nodded, so i have no idea if she understood my question.

Barnum lies on a black yoga mat next to Sharon, who is in her powerchair with the back reclined all the way and her feet slid off the footplate. She's wearing a large white mask covering all of her face but from her eyes up. One arm is hanging over the side of the armrest, the other is outstretched on the table where a nurse in a medical mask and gloves is changing Sharon's PICC line dressing.

Nurse visit

i sepnt most of the appt w/my eyees shut and reclining as much as i could, but of course i also wanted to use it as training oppty so i clicked and dropped cheese onto barnum’s mat, but then that was too exhausting so my pca stood in front of mat and dopped cheese after i clicked. i have a box clicker with a light touch.

having MCS makes nurse visits a really big deal. u might notice i’m wearing a mask and a black air  filter on a cord around my neck. that’s because even tho my nurse tries to be fragrance free, she lives with people who use fragrance, so it gets on her. and she sees other patients in their fragranced homes. after she leaves, the whole house reeks, and we keep all the doors shut we can so it doesn’t get into the bathrooms or my bedroom. she sits on a wood chair, never on the sofa or putting her stuff on the sofa, because it would absorb the smells. and i can’t let her into my room bec she would contaminate it, and i need a place i can rest and breathe.

now my pca has brought me “lunch” even tho it’s evening bec i forgot to talk to her abt food until the end of her shift, bec i’m so out of it, and now she’s gone and i’m doing better but not well enough to really be able to food myself, so i try to prop the plate on my chest and overbed table and eat with my fingers a few pieces then put plate on bed and rest.

barnum was on my bed, which he’s not supposed to be when i’m eating. the rule is he gets ignored while i’m eating unless i ask him to do something or he alerts to something, but i have no way to tell him to get off, so i just let him be there. besides, it feels comforting. but this is another reason why i am not the consistent trainer i  wld want to be: sometimes i’m not able to be consistent. i know what i’m doing wrong and there’s nothing i can do about it.

i just realized something. i want u to know this bec it’s  important.

i don’t want u to feel sorry for me. i hate pity, honestly. I want to be KNOWN.

because actually,in this moment  i’m happy. maybe that sounds  hard to believe, but really, despite being so sick today, it’s not a bad day. i’m enjoying watching and listening to the birds ouside my window (have a blog post i’ve been working on about birdwatching and lots of photos.)

i feel content. the pain is not as bad now. i have had help mos to fthe time i needed it today and my night pca will be here later.  barnum has been adorable and actually did a few desirable behaviors. i’mnothaving bad payback (reaction) from the nurse visit exposures, partly bec i have all the windows open bec it’s warm today.  a barred owl has started its strange call (they are active during the day – strange birds).

i feel satisfied and glad i was able to do this blog.

i got to listen to a  phone call  (it’s a class — NVC — and i couldn’t say much but i was included, nonetheless; theyh’re my community, everyone else is chronically ill, and i can just listen and be part of it and know i have companionship). i got to tell a friend i love her.

and iknow this will pass. this is my body wisely saying, “sharon! chill the fuck out! stop doing so much! lie around and do nothing! stop thinking! stop training! stop  blogging! stop tweeting! rest and sleep as much as u can. dammit.” after i post this, that’s what i’ll do. because lyme and mcs (and cfids) awareness means people knowing that those of us who enter thepublic sphere in any form, including internet, are making a CHOICE to do that and not do other things, or to suffer physically as a result.

and it means trusting u all, which i do, ur wonderful, to still be there when i get back when i am not posting everyday and trying to be someone i’m not, someone who doesn’t have cfids, lyme, and mcs. and trusting u to know that i love ur comments, but it’s an effort to reply to them, bec that takes work so if i’m slow or don’t reply, that is why. because i have cfids and lyme and mcs. i treasure them. i smile with almost every one.  my heart is full, thanks to ur support and sue eh’s support and barnum and others.

the migraine is setting in now; my body is pissed that i’m not heeding its call. do me a favor, will u? pls post and fwd this link to everyone you think could stand to know about lyme, cfids, and/or mcs. because i’m not up to it, and i know you get it now, because you’ve  seen me at both ends of my spectrum. thank you.

this is me. radio silence.

love,

sharon, the muse of gadget, and barnum, quietly concerned sdit

Left, Left, Left! The Bittersweet Tweak of the SD Working Walk

I’ve been writing about Barnum and me practicing our service-dog walk, or as I call it, “working walk” (WW). (For example, here and here and here, among others.)

I have decided to try to focus on fixing our left turns. With Gadget and Jersey, they were most likely to maintain correct position in left turns, and going forward, and particularly right turns, needed the most work.

I’m not sure why the difference. I think in Jersey’s case, it was pretty straightforward: she did not grow up around chairs, and I had to introduce her to my four-wheeled mobility scooter very slowly. I only used it when I went out of the house. I didn’t need it indoors.

A scooter has a much longer base than a powerchair, so the dog has a natural barrier to line up with already. Then, with Gadget, he learned WW both with me walking and with me using the scooter, and then I switched to a powerchair, after he’d already learned the scooter. So, he had the advantage of that long base to learn on, too.

Barnum, however, has grown up around me using my pchair full-time, and he has had to learn how to stay out of its way to keep safe. Therefore, his natural tendency with a left-hand turn is that when I start turning into him (he’s on my left), he usually walks forward, out of my way, so that we are then facing each other, and then he “catches up” and gets back in line after I’ve turned.

If we are in a tight space, he will back up, instead.

So, he problem-solved this, himself, while he was growing up, and now I am trying to figure out how to tell him, “While what you’re doing was a good strategy for not getting your toes rolled over, if you want to get clicks and treats, you have to trust me that I am paying attention to your toes, and keep following next to me.”

I decided the reason I haven’t been getting this message across is that it’s very hard to do a high rate of reinforcement while also steering, moving, keeping track of his head and his feet, treating, and clicking!

Really, I need to be able to shape this by clicking every time a front or rear paw moves  with my chair when I am starting to turn, in the middle of the turn, and at the end of the turn. It’s impossible to click that often and turn, at the same time!

I’ve tried using my verbal marker (“Yes!”), but that’s not precise or fast enough, and it’s pretty exhausting, too.

I tried going super slow, but even super slow is too fast to be coordinated enough.

Tonight, I asked Betsy to click Barnum’s position, while I steered us verrrrrry slooooooowly around the living room, dispensing cheese, like a big, cheese-dispensing part-human, part-vehicle. My hands were very sticky, and I was dropping cheese on my footrest, my lap, the floor, and even into the dog’s mouth!

He started just trying to lick and chew all the cheese out of my hand as we moved, so I had to pull it back a bit.

Nonetheless, after fifteen minutes of this — which is quite long for such an intensive session — Betsy and I decided to see if I stayed put, if he would get himself back into position. A little free-shaping, in other words.

I sat there, and Barnum looked at me, waiting for me to move. I acted boring.

He sat. No click. He downed. No click. He stood up. At that point, I would have clicked, but Betsy was doing the clicking. I said I would have clicked that, and next time, she did.

Which was soon, because he did another sit, down, stand. Click!

I waited to see if he’d line up again. Eventually he did start to do that, but, Betsy pointed out, “He seems to think he should stare at you and sit, down, and stand when you stop.”

I agree. Here again, I have unwittingly taught an undesirable behavior chain! Barnum is such a master at learning the unintentional cue and the unintentional chain!

I take back what I ever said about him not being that smart. He’s smart, but in a different way than Gadget. Gadget and I had mind-meld. Barnum is a body-reader.  (Jersey, alas, was not all that smart, but she was very eager!)

Anyway, we made some progress, and now I’ll keep tweaking it. And, oh yeah, I’ll untrain that behavior chain. Argh.

The friend who made me the service-dog leash I wrote about yesterday has offered to make me new gear. I hadn’t thought of that, because that leash is actually in excellent shape. Part of the reason for that is that I have only now started using it with Barnum. It was kept safe from him during puppyhood and teenagerhood.

Here’s what happened to the leashes I used while Barnum was growing up. . . .

This is an organic hemp leash, dyed with nontoxic dyes, that I bought especially for widdle baby Barnum, to match his widdle organic hemp collar.  (Next time I’ll know better.)

Red hemp leash torn in two

Notice the teeth marks all along the leash (even where it's not completely severed).

[Image description: A dirt-stained, six-foot, brick-red soft leash, one inch wide, of a thin cotton-appearing material (which is actually hemp), with a heavy brass clasp at one end, arranged on a waffle-pattern beige blanket. One foot from the clasp, the leash is torn apart, frayed, with a couple of longer strands trailing from the torn part. There are small holes and rips in the rest of the leash as well, giving the impression other parts of the leash may not last long, either.]

Below is the service-dog leash I bought for Gadget, near the beginning of my partnership with him. I also had another, forest green, that I originally bought for Jersey, that I also used sometimes with Gadget, and then with Barnum. Both the green and the pink leashes survived all those years of use, and now they each look like this:

Broken clasp on pink service-dog leash

This is one of two service-dog leashes that used to have clasps at both ends, and now have functioning clasps at only one end.

[Image description: Two ends of a hot-pink nylon webbing leash each with a silver snap at the end, lying on a white background. The clasp on the right looks fine, the clasp on the left is broken, with only the stem and a half-crescent of the outside of what was formerly the clasp still attached.]

By the way, all three of these leashes met their doom in the same manner: Barnum was out for a walk. He lunged after something exciting (in all cases, I think, it was another dog he just had to play with, right that very instant!), and the leash went “Ping!” (in the cases where the clasps snapped in half) or “Pffft!” (in the case where the leash ripped in two), and away Barnum ran, to play.

So, yes, I could use some new leashes, especially for attaching to my outdoor powerchair. I got all excited at the possibilities, then confused by a mixture of feelings.

I feel quite bitter-sweet about Barnum starting to fill Gadget’s footsteps in a literal way. There he is, by my side, as we practice what it will be like when we are in crowded, close corners in grocery stores or doctor’s offices.

Sometimes, now, he’s even wearing Gadget’s old harness or pack or leash. It’s very exciting, and it also causes what was initially an unnameable twinge. When I paid attention to the twinge, it blossomed into recognizable heartache.

Maybe it’s good that it’s taking us so dang long to become a SD team. It gives me time to adjust to Barnum doing the job differently than Gadget.

I think I might want a different colored leash for Barnum, just to help me emotionally transition from Gadget. Whatever their color, they need to be very, very strong.

-Sharon, the muse of Gadget (and you thought I was strong!), and Barnum, SDiT and Reformed Leash Destroyer

One Step Closer: The Service Dog Leash

A lot of exciting activity yesterday. As I posted yesterday, for a few days, Barnum was not getting his usual amount of attention because I had [gasp!] other things I needed to deal with. So I tried to keep him entertained with his Kong Stuff-a-Ball.

Periodically, during my writing flurry, I’d call Barnum, just to work on his recall and remind him that good things happen when he comes to me. (Good things in this case are food, some lovin’ up (but only if he’s in the mood), and a release to go back and play with his toy.) But he did miss training. He got quite cranky about no training, actually.

Thus, I knew he had focus and motivation, so yesterday, for the first time, we used my service dog (SD) leash. While using a different leash might not seem like a big deal, it was to me, because:

  1. It attaches to my waist, so pulling would be a real problem.
  2. It is much shorter (unless I let it out for going behind me) than our practice working leash (it has two lengths of about 32 inches each, so normally it’s 32 inches from my waist to his collar, except if I adjust it to make it longer)
  3. I want him to associate that leash, along with his other working gear, with him being totally focused on me, so I waited to use it until I was sure I was at nearly SD working-walk competency before we used it in training.

In other words, symbolically, it was of much greater importance to me than to him. I had to know we were both really up to the task before I started using it. Yesterday, I felt confident that we were, and we lived up to expectations! Gooooo, Team Barnum!

We practiced “working walk” (WW) around the house and on the ramp, and he was really excellent. WW is something between loose-leash walking (LLW) and “heel” (as it’s used in competition). For WW, I require not just a loose leash, but eye contact at least every three seconds (preferably more), attention focused on me and my movements at all times, no elimination or marking or sniffing the ground, no eating anything he comes across unless it’s a treat he’s been clicked for that’s fallen, and I tell him “go ahead,” and he has to maintain parallel position with my chair on my left side (unless I ask for something else).

We were about 80 percent to a perfect WW (in very familiar surroundings — I’m under no delusions we can achieve this in the wide world). The only parts that were off (the 20 percent that was unsatisfactory) were the following:

  • He took left turns much too wide, still haven’t come up with a fix for that — I didn’t have this problem with Gadget or Jersey;
  • His butt swings out a bit too far sometimes, especially when making eye contact (i.e., he’s not as parallel as I want);
  • He hasn’t totally figured out the correct way to get back into position when we’re in a really tight spot, like a close corner;
  • He does not 100 percent know his cues for sit and down with one verbal cue only while on the move, in positions than facing me, etc.

That probably seems like a lot that’s “off”, but please compare it to all the stuff he was doing right!

  • Great eye contact;
  • Overall consistency in staying in position;
  • Maintaining default stand-stay when we come to a stop;
  • Knows the cues for getting back into position if he’s facing me and I want him to get back in heel position (“come around,” and “side”), and often did them default (without cueing);
  • Loose leash all the way
  • Performed other skills I tossed in (shut cupboard, shut drawer, touch, watch me, leave it, sit-stay, stand-stay, down-stay when chair moves)
  • His “back-up” is a thing of beauty — I’ve never had a dog who backed up next to my chair so well — and he does it as a default whenever I back up (without cueing), and he does it almost equally beautifully if I cue him to back up while I stay still

I was very excited!

We also had some interesting little bonuses during our session. At one point, while we were doing WW indoors, he rested his chin on my thigh and looked up into my eyes, and I laughed, because it was so cute, and without thinking, clicked it.

Then I thought that chin-on-knee/thigh in public might actually be a useful skill, for instance, if I need him to check in with me because the environment is distracting/overwhelming for either of us, or to signal that yes, he’s working and paying attention, or if I want him to take my agitation-calming behavior “on the road.”

So, while he was in that mode, I cued and clicked “Chin” a few more times. Then we made our way to the driveway, to practice in a more distracting environment, because he is used to the driveway leading to the road (excitement!), which leads to a walk (unbelievable excitement!).

As I’ve learned from Sue Ailsby, whose Training Levels I’m following, whenever anything changes in a behavior, especially something that’s such a big deal as a more distracting environment, you make everything easier. Therefore, from the gate onward, I loosened criteria for everything except these behaviors, which I still required:

  • Loose leash
  • Relatively correct position (on my left side, but he didn’t have to be parallel or really close, etc.)
  • Eye contact/noticing me (it didn’t have to be really good eye contact, but he had to at least flick his eyes up to my face on a pretty consistent basis)
  • Taking treats (because if he can’t take treats, he’s too distracted to think and pay attention to me, so there’s no point in continuing until things get boring enough that he can think again).

If he was paying attention to me, taking treats, etc., we went forward, out onto the driveway and toward the road. Anytime he started sniffing the air or staring off into the distance or otherwise not paying attention to my being on the other end of the leash, I’d back up.

It took him a while, but he caught on. We didn’t make it to the street, but that was fine with me — it hadn’t been my goal. (Although I’m sure, given the chance to think about it, it would have been his goal.) He also made no attempts to sniff the ground or to mark!

Then we did a working walk back into the yard, he did a sit-stay while I closed the gate and took off our very special leash and I gave him a release, and we played chase and fetch.

I enjoyed another bonus surprise behavior during our play. He was bringing me back the ball!

He used to have a very nice play fetch as a puppy (which I know is common for puppies, but not so much for bouviers, so that was something the breeder and I actually looked for), then it lost steam in adolescence (again, pretty typical to lose that type of behavior in adolescence), and I had started training a strong play retrieve, but then winter and snow made that impossible. (The tennis ball needs hard ground to bounce and roll on, and the bigger balls that can be used in the snow got buried. I also couldn’t get around in the yard because of the several feet of snow to keep training fetch.)

Therefore, this was our first time playing ball in many months, and without my even asking, he was bringing me the ball! To earn treats!

Such a good day!

Then I let him have some free time in the yard to dig in the mud. Hey, he earned it!

By the way, to anyone training their dog who feels guilty if you miss a day (or a week) of training, I say, consider it a strategy. We went the previous few days with the bare minimum of training. A couple of times, I did a little with him because he was just begging me for it, and I felt he needed it for his mental health, but it was very brief. Otherwise, because I was on a deadline, I was either writing or resting or sleeping. Even though he was getting physical exercise, he would cover over and be like, “Train me, dammit!”

So, that was actually good for us. I think it is good to take a break sometimes and get the dog really demanding training.

Peace,

Sharon, the muse of Gadget (I will never divulge the secret of the crisp left turn!), and Barnum SDiT (and looking dapper in the gear)

A Grand Day Out: Barnum and Sharon Hit the Road (and Find Training Partners!)

A Speedy Pee, a Walk, a New Training Partner, and Improved LLW and Recall, all in one go!

What an unexpectedly wonderful series of events Barnum and I had on our walk today!

It started terrifically, when I took Barnum out to pee.

We have been in rather a battle of wills, I’m afraid, over peeing on leash. Barnum has incredible bladder control. I’m convinced he has the bladder of a dog three times his size, because he can — and will — hold it for 16 or 18 hours, even when given numerous opportunities to pee.

You see, now that the weather is better, I have been very dedicated to not letting him out to relieve himself off-leash. Ever. If I’m not able to take him out, I have one of my helpers do it.

Longtime readers know I’ve been obsessed with having a service dog who will eliminate on cue, on leash, on every surface, since before Barnum arrived. Although, as a puppy, he was always taken out on leash to eliminate, and did learn to eliminate on leash, on cue, he seems to have forgotten all of that over the winter, when I got sloppy and too sick to stay on top of it.

Thus, we began again. . . .

For the first few weeks, I’d take him out in the morning, knowing he had to pee, but I think because he gets so distracted by being outside (exciting!), and because he prefers to relieve off-leash, he would not “go.” I’d take him in after a couple of minutes, and an hour or two (or five) later, I’d take him out again.

Often, he would ring the bell, indicating he needed to go out, but when I took him out, he wouldn’t go. So, back in we’d go.

Finally, sometimes not until evening, he’d pee, I’d give my cue word as he squatted (“Hurry up!”), click when he was done, give high-value treats, and then let him off leash to run around. I “ran around” too, if I was able, zipping up and down the ramp, pretending I was chasing him, or encouraging him to chase me, and he loved it.

All that running around naturally led to him needing to poop. Eventually I need to have all elimination functions on cue, on leash, but I decided that the reinforcer of being able to run and play off leash after peeing was more important than a Cold War of waiting for him to poop all day, every day.

When I started this process, a few weeks ago, I had to take him out several times a day, all day, before he would pee. Within the last few days, he has more often been “going” on the first or second attempt.

Today, I took him out, and  he peed within one minute! Then, in addition to the click, praise, and treats, I could offer the best reinforcer of all: “Do you wanna go for a walk?!?!”

Puppy Barnum races Sharon in the superpowerchair

He's a lot bigger now, but this is how we ROLL.

[Image description: Five-month-old puppy Barnum races next to Sharon across the lawn. He is running full-out, with his ears flying straight behind him, his red tongue hanging out and to the side, his legs fully stretched out. Sharon, in her big power chair, watches Barnum as she zooms alongside. They run through the grass, with a metal fence in the background. Sharon wears a straw hat and shorts, suggesting a sunny day.]

Indeed, the fact that we were able to go for a walk was a joy in itself.

Mostly, lately, we have been just practicing loose-leash walking (LLW) up and down our driveway, or — if I have someone to load the chair and drive me — an off-leash run at the pond. (I have video of one of our driveway walk sessions, which I hope to edit and post eventually. It shows quite a dramatic change from our LLW training videos from the fall.)

I’ve been doing driveway “walks” for two reasons:

  1. It’s easier to practice LLW and “leave it” (Zen) in this less distracting environment.
  2. My chair has not yet really been fixed, so I wanted to wait until someone was home, on the other two-way radio, when I went out.
Pchair with headlights

This is how my bad-ass chair looked when it was under construction, and running!

So, even though it was a short walk, this was our first real walk in a long time.

We started out on a good paw, with Barnum doing quite well in his LLW and even managing to take treats and stay in position. Then, the smells got too interesting, and he didn’t take treats anymore, but he still kept pretty good track of his pace and the leash.

Although it is mud season, and thus the roads have not been graded yet and are full of gulleys, the chair managed well. We were going up an extremely steep hill, with only occasional reverses from me if Barnum got ahead when one of his dog friends, a sweet and lively Vizsla rescue, came pelting onto the road.

She was off-leash (as most dogs are in my area), and she kept “dive-bombing” us to try to play with Barnum. Of course, Barnum completely lost his head and tried to pelt after her. Repeatedly. (Thank goodness for migraine meds.) It was very difficult to keep him from pulling with such a temptress coming and going in all directions.

Nonetheless, we eventually made it up the hill to the Vizsla’s driveway, where her person appeared. My neighbor held her pup so Barnum could have a chance to settle, sit, make eye contact, stay in a sit, make eye contact again after I’d unclipped his leash, and then give him the release. (I have patient neighbors.)

Barnum had a wonderful time playing with his friend, as well as running around and marking every place he could.

I was very pleased that his play was overall appropriate and friendly. He has really only played with one dog for the past four months, a rough-and-tumble dude who can be a bit dominant and resource-guarding around Barnum (the resources being me, his owner, snow, and any food his owner or I might have on us).

(Just for fun, here is a ten-second video of Barnum playing with aforementioned buddy a couple of months ago.)

I had been concerned that Barnum’s play manners would have eroded as a result — that he wouldn’t play with the same variety and good doggy manners as he used to. But, no, with the exception of two aborted humping attempts, he was quite the gentleman.

It was also great to be out and to talk to another human being, away from my house! I really like my neighbor, and as we chatted, she mentioned that she needs to train her dog. Apparently, she is a cat person, her husband is a dog person, so they got a dog to be her husband’s. He trained her, but now my neighbor is at home with her most of the time (although she also works outside the home) and has no experience with training and dog handling in general. She has an infant, and seemed a bit daunted by the prospect of learning dog training with so little time, in this “baptism by fire” situation.

I couldn’t believe this amazing opportunity was presenting itself!

Regular readers of this blog know that I am following Sue Ailsby’s Training Levels. Some of the Levels skills require working with other people and/or dogs. I have tried to find a training partner, to no avail. While Betsy and my PCAs pitch in when possible — a tremendous help — usually they are too busy with other necessities, and also, none of them have a dog!

I asked my neighbor if she’d like to be my training partner, and she said yes!

Since we had just gone through her trying to get her dog to drop a dead rodent she’d unearthed, I decided to teach her about doggy Zen.

She was very easy to work with because she is wild about whatever training treats I have with me, whenever I visit. (Whereas Barnum usually could not care less.) This girl is very food motivated! And she’s plenty smart and caught on quickly.

She tends to jump up on me a lot to try to get treats, so I went back and forth between four-on-the-floor and Zen. (By this time, her person had her hands full with her baby, so she said she preferred to just watch me train her dog.) While I was training, I explained what I was doing and why, how to use the clicker and treats, and how to practice zen on her own.

“Where can I get a clicker?” She asked.

This question surprised me so much I almost laughed; because my house is full of clickers, it never occurs to me that someone might not know where to get one. (I told Betsy that our neighbor asked this, and she said, “Come to our home and look under the sofa cushions. They’re everywhere, like loose change.”) Right now, just rotating my head in bed, I have counted six clickers visible — four different kinds — three of them within a few inches of my hand!

“I’ll give you one!” I immediately told my neighbor. Unfortunately, I couldn’t give her one right that moment, because — for the first time ever? — I only had one with me!

But, we decided to keep in touch, and we would try to set up a time to do some training together.

Another wonderful bonus of our conversation was that Barnum eventually saw that I was not paying attention to him, but to another dog, and that I was clicking and treating this dog, and — most importantly — the other dog was not paying any attention to him!

So, he came over.

This gave me the opportunity to click and praise extravagantly and shove some cheese in his mouth before he could question my motives. Then, I gave him his ultimate reinforcer: “Release! Go play!”

Away he went. After that, he started checking in with me more often, and even coming when called for some cheese and a release back to play. I was thrilled. This is the best he’s ever done in a new environment, with another dog around, to boot.

Eventually, my neighbor took her baby and dog inside, and I did several more recalls and releases in their yard before putting Gadget on the leash to go home.

Now he was truly tuckered out, and he walked so nicely by my side, I had to keep telling him how proud I was of him, and what a good dog he was. He was even interested in clicks and treats for proper position for about half the time, then he was too full.

We even did a couple stops (with automatic stand-stay) and a few sits.

He’s spent a good portion of the evening snoring, having received lots of sensory stimulation and exercise of his body and mind. Ah, tranquility.

I had a session with my empathy buddy for my telephone nonviolent communication (NVC) class, and as she helped me figure out my emotions, I realized I was proud, not just of Barnum, but of myself!

It seems ridiculously obvious that the point of training is that improvement occurs, goals are reached, and, well, the dog gets trained. However, when I’m in the midst of it, it’s often hard to see that training is, indeed, taking place.

After four months trapped in the house, only able to train indoors, I had no idea if our indoor LLW practice would bear fruit outside. Now I know — it has!

Sometimes I feel so overwhelmed by all we still have to work on, I lose sight of how far we have come. Today was a gorgeous reminder of our progress, along with some unexpected gifts bestowed by my neighbor and her sweet dog. Barnum received lots of reinforcement: food rewards, play time with another dog, play time with me, and the multitudinous joys of a walk.

I received the reinforcement of seeing my hard work pay off. But I wouldn’t mind some more. If you’re in the mood to cheer on Team Barnum, please comment and click me!

– Sharon, the muse of Gadget (I lost my head around other dogs, too), and Barnum (Mr. Full-of-Surprises SDiT)

The Dance Begins Again

Barnum is one year old now, and I am constantly pleased and impressed with his progress, and mind-boggled and discouraged by discovering new (and seemingly bizarre) problems. (Yesterday, Barnum refused to walk through mud, which he has walked through many times before in his life. So. . . . Huh?)

I love Barnum for who he is. (He is exceptionally lovable.) I probably won’t know for a very long time, however, if he will ever approach service-dog readiness, let alone Gadget-ability.

So, what worked so well with Gadget? What made him my yardstick?

He was a training machine, for one thing, and then we worked together so well as a service-dog team. We really had “the dance” down-pat. Not that we were perfect. We had our rough edges: Skills I trained at the end of his career, as new needs arose, were not 100 percent. I never shed my “clicker dependency” of not trusting that if I didn’t have it in a novel situation, I wouldn’t get what I needed from him. Gadget hated my van, etcetera.

Now I have introduced a different dance — Sue Ailsby’s “Leading the Dance” protocol — with Barnum; because I foresee trouble if I don’t change our routine. In a nutshell, he’s in that bratty, teenager stage where he will try to get what he wants, when he wants it, how he wants it. Which is a typical teen thing, and a typical dog thing, and a typical, um, living organism thing, too. So, who can blame him?

Unfortunately for him, that lifestyle doesn’t fit in with my plans.

Part of the problem is that he is bored and under-exercised. I’m working on that. It will really, really help a lot when I get my bad-ass powerchair working, too, so we can go on long, winter walks.

Pchair with headlights

Since my chair is made of used, recycled parts, it hasn’t been clear how to proceed with replacement parts.

You’d have thought I’d have had it fixed by now, but there always seems to be some new minor crisis to contend with that prevents me from wrapping my head around the chair repair issue.

What does “The Dance” Barnum and I are doing now entail? Keeping him leashed to me throughout my waking hours (“the umbilical cord”), singing him a silly song (really!), practicing eye contact, obedience, and downs (all stuff we were already doing) and various other odds and ends. One key factor is to make my PCAs less exciting to him, and to make me the center of his universe — more than I already am.

That’s the nuts and bolts. The feel of it, though, is actually quite a bit like trying to drag an awkward teenage boy onto the dance floor: He doesn’t want to dance, it’s stupid. Why can’t he just hang out with his friends? Oh, well, actually, maybe this is fun. Maybe I’m an interesting dance partner. But no. “This is so weird, do I hafta? Oh, now that I’m focusing on the steps, actually, this is pretty cool. I’m awesome.”

Gadget was more like one of those young ‘uns who runs out onto the dance floor and has no idea that he is a hot mess. He yanks you here and there and flings you about, having a great time, with no idea that you’re not. But, he’s also got the rhythm in him, he just needs some tutoring, and he’s willing, very willing, if there’s something in it for him. He discovers he likes to move and that his partner is actually quite cool.

Over the years, “dancing” together every day, Gadget and I were like an old, married couple. We anticipated each other’s moves and moods. Was the relationship perfect? Of course not, but it worked.

To see how Gadget and I worked together — the smoothness of our dance as well as our stumbles — video is the best. I’m incredibly grateful that Betsy and I were able to make a video of Gadget and me showing off many (but not all) of his skills. My friend and former PCA, Ryan, put the video on youtube for me, divided into two parts.

In this captioned video, Part 1, Gadget retrieves the phone, brings water from the fridge, helps with falls, and more.

Here is the transcript of the video.

Now, for the exciting conclusion: Part 2! In which Gadget alerts me to the oven timer, turns off lights, opens and shuts doors, delivers messages, and more.

Here is the captioned version.

Here is the transcript of the video.

Will there come a day when Barnum and I can waltz as well, or better, than Gadget and I did? It’s possible. I’m listening for the music. . . .

-Sharon, the muse of Gadget, and Barnum

How I Sleep (Or Don’t): Powerless/In the Dark

Today’s post is for the December edition of the Disability Blog Carnival. This month’s host is Dave Hingsburger at Rolling Around in My Head.

The carnival is scheduled to go up on December 21 (the longest night of the year, for those of us in the Northern Hemisphere). The Disability Blog Carnival always makes for interesting reading, so do check it out.

Dave’s topic, and attached metaphors, are beautiful and inspiring. Here is a tidbit:

The theme is ‘dark nights of the soul and what gets you through them’ … I’d like stories and posts about how you’ve survived those times when it was ‘darkest before the dawn’.

A couple of weeks ago, I posted the first part of this series,[1] about how I was sleeping a year ago, when Gadget was sick, then dying, then gone. Most of it was written, but not published, in February, when it was all still very fresh. The time it describes is definitely one of the “long, dark nights of the soul.”

I have sleep disturbances and insomnia from multiple illnesses; sleep issues have been part of my life since 1995. However, there are definite “up” periods and “down” periods. Insomnia-wise, some times are worse than others. The last two years have been a long stretch of “worse.”

Until I started writing today’s blog, I didn’t realize why my sleep has been particularly bad the last couple of years, and especially very recently.

Maybe people who aren’t as forgetful and confused about dates and times as I am would have figured it out — even seen it coming — but the cause seems to have been the “slumbering giant” in my consciousness.

Two years ago today, December 12,[2] 2008, The Northeast Ice Storm hit. The weight of the iced trees snapped power- and phone-lines like dental floss. Even cell-phone towers came down.

powerline_ice

I never saw the damage, I just lived its effects.

Due to my disabilities,[3] I was stranded in my house (in my bed, actually), unable to evacuate, for a week.

A week without power: no lights, no phone, no water, no internet, no plumbing, no heat.

A friend with the same disabilities as I have, was even more severely affected by the storm, ending up in the hospital — an experience from which she has yet to recover.

After it was all over, my friend described the beautiful and surreal landscape she saw through the ambulance windows. She also emailed me a picture of herself holding up a newspaper from her hospital bed. The huge headline reads, “Powerless in the Hilltowns.” That pretty much summed it up.

Ice storm trees - photo by Judy Stalus

An example of the dazzling landscape many described. Even now, though I see the beauty, I'm disconnected from the magic of such images; they evoke anxiety, not enjoyment.

[Photograph by Judy Stalus. Used with permission.]

Those were longer, darker nights than I’d ever known. I wrote out my will by flashlight in case I didn’t survive.

What got me through, in addition to my PCAs, my partner, Betsy, and my (now former) best friend with whom Betsy stayed, was “capital-G”-Gadget — my service dog and love of my life — and a lot of “lower-case-G” gadgets:

  • My book on tape machine
  • My iPod
  • My flashlights
  • My TTY[4]

Wearing my warmest clothes, covered in all of the blankets in the house, I kept them all within reach.

Little things became hugely important, such as batteries.

I turned a flashlight on as soon as it got dark. I left it on until it was light, regardless of whether I was awake or asleep. In addition to the flashlight that was on, I kept a second one, with fresh batteries, at hand. When the first one grew dim, I’d turn on the second, then replace the spent batteries of the first.

When my talking-book machine’s or TTY’s batteries lost their charge, I panicked. I’d lie there, obsessing over when Betsy would be able to come and take it away to recharge it, and if I’d get it back before dark fell again.

During the day, I limited how much “juice” I used with anything that ran on batteries. I was very careful never to expend the charge on more than one device at a time. At night, I doled out the time with my book machine or iPod, forcing myself to take breaks to make them last longer.

Although, due to sound sensitivity from Lyme disease, I have not usually been able to tolerate music in the last few years, there was one song I relied on during those too-quiet nights.

I’ve never admitted this to anyone before, except Betsy: the Beatles’ song “Let It Be,” helped me get through. I listened to it at increasing volume, the ear buds vibrating, over and over. When the iPod died, sometimes I’d just hum it and cry.

Why does relying on “Let It Be” feel like such a dirty little secret? Partly because I’m Jewish, and the song, if you don’t know much about Paul McCartney, seems to have a very Christian tone.[5] Partly because finding sustenance in a song, especially a pop song — especially a Beatles song — seemed such a cliché. (But — “Whatever gets you through the night, it’s alright” — isn’t it?)

Honestly, in the middle of that seemingly endless night, being Jewish, having no connection to “Mother Mary” — none of that mattered. It’s pretty much a Buddhist concept, letting it be, though it seems like all religions have some form of “turning it over.” When you’re powerless, there’s really nothing else you can do but turn it over, let it be.

Unfortunately, life didn’t get better after the emergency ended. It got worse, severely and quickly.

Norman_Picture

My dear friend, mentor, and colleague, activist Norman Meldrum (with Beatrix Underfoote). Norm died January 6, 2009.

Within three weeks of the storm, as I struggled with the PTSD it had caused, one of my best friends died, my best (and only nondisabled) friend ended our friendship in a nasty way, and my therapist terminated with me (largely because she refused to get a TTY).

A few months later, Gadget, my service dog, was diagnosed with cancer. Then I lost more friends — some to death, some to abandonment — then Gadget, until it felt like I was pared down to a numb nothingness.

I think the piling up of too much loss and trauma in a short period explains why my sleep has been particularly bad for two years.

It’s not just the chemical injury, chronic fatigue syndrome, and tick-borne infections interfering with my body and brain’s sleep cycles — though that certainly is enough. At a deeper level, it’s also that part of me is afraid to go to sleep because the literal and figurative darkness and stillness of night and sleep are too reminiscent of the outage.

Indeed, I can’t tolerate total darkness, or true quiet, now. At night, the sound of the air filters blowing and freezer humming, the shine of the LED lights of my clock, and the glow of my sleeping laptop give me comfort.

If there’s an outage, even during daylight — even during the summer — I panic. I never know how long it will last. I now keep lots of batteries, along with glow-in-the-dark flashlights, mylar blankets, and hand- and foot-warmers, next to my bed. For a long time after the storm, I kept a flashlight in my bed.

Lately, my sleep debt accrues with every day.

It started in November, with the anniversary of Gadget’s death. Grief hit me hard, kept me awake, dragged me to sleep during groggy afternoons, then broke me open again when I should have been sleeping.

However, even as the grief recedes, I continue not to sleep. In fact, as much as I long for sleep, I keep fighting to stay awake. It took me a long time to become aware that I was doing this. After all, if I’m desperate for sleep, why would I want to stay awake until dawn?

Norm, Gadg, and me

A happier time: Gadget and I meet Norm in Maine for the reading of my work he organized.

I now realize that it’s because some part of me recognizes these short days as the same natural patterns that occurred during the power outage. That wisp of panic urges, “Keep the lights on. Don’t stop working at the computer. Write; make sure people know you once existed. Live through the night.”

When gray light starts seeping through the curtains, I feel my body relax and begin to give way to sleep.

Of course it’s not a good coping mechanism. Sleep deprivation drives up my pain in a very predictable manner, which interferes with all other forms of functioning: speech, movement, thought.

Lack of sleep weakens my immune system, which is under the massive burden of fighting multiple infections, in addition to being upregulated for two decades, overreacting to foods and chemicals. Not sleeping also brings a host of little irritations: grouchiness, (worse-than-usual) cognitive problems, emotional brittleness, a continual buzzing in my head, and dry, itchy eyes, and on and on.

Nevertheless, there are times when I make peace with the insomnia, when I can look into the teeth of a long night of wakefulness with equanimity, even eagerness.

  • When I’m feeling antisocial or my moods are being affected by “the bugs,” and I think it’s best for all involved if our interaction is kept to a minimum. (This works even better if I can manage to sleep when others are awake, too.)
  • When I’ve gotten sleep during the day, and I know I won’t be able to fall asleep anyway, so why bother trying?
  • When I can write, which has been such a rarity for so long that I will give up almost anything to have that part of me back. (Especially since some of my best or most successful pieces were written between 2:00 and 5:00 AM.)
  • When I know I’ll have to wake up early anyway, so there doesn’t seem much point after a while in catching those one or two hours of shut-eye.
  • When Barnum has both an appetite and an attention span, so I opt to train instead of sleep.
  • When I’m hungry, which keeps me awake, so I distract myself until someone can make me a meal.
  • When I have to pee, which keeps me awake, so I distract myself until I can get to the bathroom.
  • When I’m in too much pain, which keeps me awake, so I just lie still and wait for the painkillers to work.
  • When I’m writing a blog that helps me make sense of it all.

Peace.

-Sharon, the muse of Gadget, and Barnum (snoring away)

Footnotes:
[1.] Originally I planned to write two posts about sleep, but working on this post took me in an unexpected direction, creating a third piece. Since I seem to have a lot to say about what underlies sleep — or lack of sleep — in my life I’ve decided to turn “How I Sleep (or Don’t)” into an ongoing series. Look for other new series, as well. (I’ll also pick up the thread on some I’ve dropped, such as Barnum’s training logs — lots of developments!). Back to post.

[2.] I started writing this post a few days ago. I actually do know today is not the twelfth. Back to post.

[3.] CFIDS and Lyme made me too sick to be moved, but the real barrier was MCS, which meant that no shelters — neither the homes of friends nor disaster shelters, such as fire stations, were accessible to me. In fact, partway through the crisis, I located a friend who lived nearby who also has MCS and CFIDS, who was hypothermic and desperate, alone in her home. She stayed in my bedroom with me until her power was restored. Back to post.

[4.] Even though there was no phone service for most of that time, I used the TTY to communicate when it was too dim for Betsy or my PCAs to see my lips, gestures, communication board, or signs. Back to post.

[5.] During the time of the outage, I didn’t know that the “Mother Mary” in the song refers to McCartney’s mother, Mary, who died when he was a boy. Back to post.

My Lyme Disease Is Not the IDSA Lyme Disease – Sharon Wachsler

This past Wednesday, December 8, 2010, the Chicago Tribune published a lengthy article called “Chronic Lyme Disease: A Dubious Diagnosis.” This article is so biased and filled with misinformation, I need to respond. (As  you’ll see at the bottom of this post, I’m not the only one.)

The article’s central claim supports the stance of the Infectious Disease Society of America (IDSA) that chronic Lyme doesn’t exist.

[The IDSA concluded that there is] “no convincing biologic evidence” for a Lyme infection that persists and continues to sicken despite the recommended treatment, usually a few weeks of antibiotics.

My experience, and the medical evidence that is part of my experience, contradict this dangerous and preposterous notion. Here is my own Lyme disease story (which will act as Part II of the Lyme Awareness Month post from May 2010, when I promised to describe how Lyme has affected me, and what you should know about it).

Summer of 2007

My case is a little different from the typical “How I Became Disabled/Ill” narrative because I was already disabled by chronic illness before I got Lyme disease. I usually try to avoid comparisons among disabilities, but I have to speak the truth: What I have gone through with Lyme disease has been much, much worse than what I experienced in my previous decade of chronic illness. I would gladly have my other illnesses double- or triple-fold more severe if it would rid me of Lyme. I’ve lost parts of my life and myself to Lyme I didn’t know it was possible for me to lose.

Here’s how it started. One day, I was sitting on the couch watching TV, absent-mindedly running my hands through my hair when I felt something sticking out of the nape of my neck. After living in the severely tick-infested area of rural Western Massachusetts with two dogs, I immediately knew this was a tick, although it felt rounder and much smaller than I was used to. Nevertheless, I wanted it off me; I didn’t want to wait to mess around with mirrors and tweezers, so I handled it as I did the dogs’ ticks — I grasped it at the base and pulled.

I heard the “pop!” that occurs when a tick is removed that’s been embedded, and as I had pulled at an awkward angle — my hand behind my head — I dropped it. Into the sofa. The falling-apart, loose-foam, shredded-upholstery black-hole-of-a-sofa. I tried to find it, but I never did.

I was pretty sure it had been a tick, but I wanted to see. I was hoping I had just pulled off some random, weird thing that was not a blood-sucking insect. However, when I checked in the mirror (two, actually, since it was on the back of my head so I couldn’t see it without a second reflection), there was a large, dark-pink raised area with a bloody center — just like how it looks if I pull an embedded tick off my dog. I cleaned it and hoped for the best.

I checked it again over the next couple of days. The area was flattening out, the scab was healing. My (mis)understanding at the time was that if one contracted Lyme disease, a bull’s-eye rash would appear immediately at the site. I saw no rash, so I forgot about the bite.

About a month later, I developed joint pain in my fingers. Out of all the symptoms I’ve had with all my health issues, I’ve never had my joints bother me. The pain was bothersome, but not severe. However, I was a writer, and I relied on my hands for work as well as to make up for functional limitations in other areas caused by my disabilities. I was very protective of my hands. I just didn’t want anything to get worse. Fortunately, I happened to have a doctor’s appointment coming up.

At my biannual appointment with my primary care physician, I mentioned the joint pain. She thought it was probably a worsening of my other conditions, but suggested a couple of tests, including one for Lyme. That set off a bell in my head. I remembered that thing that I had pulled off the back of my head. When I got home, I grabbed my hand mirror and went to look in the mirror over the bathroom sink. I parted my hair and looked at the area where the bite had been. It was flat now — no more bump — but it was definitely discolored. It was red.

I looked up Lyme disease online and discovered that the array of symptoms I’d been experiencing in the last couple of weeks were classic of Lyme — not just the joint pain and the rash, but the new kinds of headache and vertigo, the drowsy fatigue, the constant ache in my neck and shoulders, and more. Crying, I got out my dog-grooming clippers and shaved off the hair in that area so I could be certain of what I was looking at. I compared it to the pictures of erythema migrans (Lyme rashes) I’d seen online. Bull’s-eye.

Well, metaphorically, at least. Some EMs look like bull’s-eyes, but they are just as likely to be roundish, red rashes. I knew this was serious.

Large reddish-pink splotchy rash on the back of Shaved headLyme Rash

My Lyme rash (EM). The clear spot in the middle is where the actual tick was attached.

I called my PCP and told her about the tick bite and symptoms. Because I’m allergic to tetracycline, a relative of doxycycline, the frontline drug for Lyme, the doctor prescribed the second-best antibiotic for early Lyme, amoxicillin. I read all the comforting information by the Centers for Disease Control (CDC) and the IDSA that Lyme, when treated promptly, responds quickly and completely to appropriate antibiotics. I had heard of chronic Lyme, but my impression was that this was a disease that only occurred if one went years without treatment after infection. I also thought of it as a mild disease, more of a nuisance — some joint pain, maybe a little fatigue, but not a big deal.

“Something Curable and Non-Controversial”

I focused on the information on site after site that said prompt diagnosis and treatment would cure me. I even told my friends and family, who were upset and scared to hear I’d contracted Lyme, “At least I have something curable this time!”

I meant it. Yes, I was scared. I didn’t like having a frightening disease given to me by a disgusting tick, but I felt almost giddy with relief that now I would be on the road to recovery. This was just a bacterial infection. Antibiotics kill bacteria. Within a couple of months, I’d be back to normal.

It was also a nice change of pace to have a disease that seemed to be without controversy. Lyme was caused by a known microbe; nobody disputed that. Unlike my other diseases, whose etiology was still being pieced together, this time I would not have to hunt for a physician who knew how to diagnose and treat me.

I stayed on the amoxicillin. Initially, I got much sicker (which I now know is a Herxheimer, or die-off reaction), and then most of my symptoms started to improve. But not all of them. My PCP kept me on amoxicillin. Weeks turned into months, and some of my symptoms, including my rash, persisted. Different antitibiotics just made me worse. I became much sicker.

Thank God I had that rash.

Doesn’t that seem like a strange thing to say? That’s because in the hellish time to come, the rash would be the one piece of incontrovertable truth that the tick bite had occurred and done damage. It was proof of infection, proof that something wrong was left behind, something visible on the skin.

In November, I became suddenly and drastically worse. The light- and sound-sensitivity and headaches became all-consuming. The musculoskeletal pain was unendurable. I developed neurologic symptoms, including intermittent vocal-cord apraxia (inability to speak) and functional paralysis in my arms — and more often — my legs, severely compromised cognition, and behavioral and mood changes.

I was so weak that I couldn’t leave my bed and had to use my powerchair to get to the bathroom. I needed help to brush my teeth, eat or drink, get in or out of bed. I had trouble breathing and eating; I lost thirty pounds.

I started searching for a doctor who could help. None seemed able to intervene because none of them were convinced, entirely, that my illness was caused by Lyme. Why? Because all of my Lyme tests were negative. I soon learned that this was meaningless; Lyme tests are notoriously inaccurate for producing false negatives. I was tested over and over for multiple tick-borne diseases by multiple doctors as I started seeking more answers. All bloodwork returned “inconclusive” or negative.

However, the CDC officially states that blood tests are not to be used as primary diagnostic tools for Lyme. The IDSA and CDC both say that the presence of an EM rash is 100-percent proof of Lyme infection, and that treatment of patients with EMs should begin immediately; blood tests in such cases are optional.

That’s what they say. Officially. However, none of the doctors seemed to know this. . . .

“Lyme Can’t Cause This.”

I was desperately ill and scared. My friends and family were afraid that I was dying. Yet nobody could come up with a diagnosis. Physical exams and blood tests showed abnormalities, but nothing gave a conclusive answer as to the why.

The only thing we knew that had been added to the mix was Lyme disease, and that was now being dismissed because (1) all my blood tests for Lyme were interpreted as negative (despite that all my lab results say right on them that the test is not conclusive and that clinical evidence must be taken into account), and (2) my doctors were as uninformed about Lyme disease as I’d been.

“Lyme can’t do THIS,” I heard again and again, as each doctor rushed me out of his or her office. Most knew something physical was truly wrong, yet I still heard suggestions for psychiatrists. Doctors who had known me for years treated me like a scary stranger. I was told to find out what was wrong and then come back. Some refused to see me altogether.

Yes, I had had Lyme, the doctors agreed, that was not in dispute, but since I’d been treated for it (actually, according to IDSA standards, I’d been overtreated for it), it could not possibly be the cause of my myriad symptoms. My Lyme was cured. So, all of this suffering and blatant physical dysfunction that occurred immediately following infection was just a coincidence. Besides, everyone knew Lyme just caused some joint pain, headaches, Bell’s palsy, etc. It didn’t make you unable to speak or lift your foot. It didn’t create such agonizing pain that it literally immobilized you. It didn’t destroy your life, like whatever this was.

Thus, in February 2008, my Lyme doctor stopped treating me. She knew I was sick, but without a positive test result, she said she couldn’t “justify” continuing to prescribe antibiotics. I didn’t know at the time that doctors who treated patients with Lyme beyond the IDSA’s “guidelines” were in danger of losing their licenses, losing insurance coverage, and even criminal prosecution. I just knew I was being abandoned.

I spent nine months without treatment, unable to talk, stand, feed, toilet, or bathe myself. I was in excruciating pain, nauseous, dizzy, and couldn’t tolerate any sound, movement, touch, or light. I had migraines around the clock. I had psychological symptoms I’d never had before, altering my personality, and causing me to lose most of my friends.

During this time, not knowing what else to think, I eventually began to believe the doctors. They said this wasn’t Lyme, therefore it must not be Lyme. I didn’t know what it was. I just was holding on for dear life.

I had one friend who had gotten Lyme around the same time as I had. Luckily, her test results had been positive, though she did not remember a tick bite. She was absolutely convinced that my symptoms were caused by Lyme and coinfections. She sent me printouts of Internet Lyme forum posts from other people who’d lost their voices, who couldn’t stand or walk or had tremors, and on and on. She begged me to get retested.

“Positive”

Physically and emotionally, it took everything I had to get retested. In October, 2008, I was again tested for antibodies to the spirochete that causes Lyme, as well as for three other tick-borne diseases. I couldn’t bear the thought of the results coming back stamped, “Negative, negative, negative.” It would be the end of hope. But, I needed someone who was in a position to help me heal to finally know the truth, and this seemed the only way. I had to risk it.

I remember sitting in front of the fax machine, slumped over with exhaustion in my power wheelchair, as page after page came through from the lab.

  • “Western Blot, Borrelia burgdorferi” (the microbe that causes Lyme), “Positive.”
  • “Lyme disease — Confirmed by Southern Dot Blot, Positive.”
  • “Babesia microti” (another tick-borne disease), FISH (a test that shows the presence of the parasites’ RNA in my blood), “Positive.”

As the positive results came through, I cried and cried. Finally, answers. Finally, “evidence” that I wasn’t “crazy.” Over a year-and-a-half after infection, the combination of antibiotics goosing my immune system into producing enough antibodies, and the time that allowed the organism to multiply in my blood and tissues had led to proof: positive blood tests for Lyme and babesia.

Based on these results, my doctor started treating me again. She said she was “thrilled that now she could finally help me.” I can only assume that she had been afraid to risk it before, to risk her practice, because of the politics.

With these two diagnoses came a third — Bartonella. I had almost all of the symptoms, and it is even harder to get an accurate test for this infection than for Lyme. In light of the proof of existing tick-borne disease, my doctor now made a clinical (symptom-based) diagnosis of this third infection. Bartonella seemed particularly likely to be at the root of the psychological symptoms that had cost me my sense of self and most of my support system.

Thus began a grueling treatment regimen, with herx reactions so strong that they usually lasted for several months. Now I am slowly — very slowly — getting better. I’m still not back to how my life was. But I can do more, I suffer less physically, and my personality has been returned to me. I have hope.

“Dubious?” How about “Definitions”?

The IDSA says there is no evidence for chronic Lyme infection that persists after their recommended treatment of 28 days of antibiotics.

My body — my story — provides the evidence that the IDSA is wrong.

Let’s break it down, definition by definition:

  • Evidence: It should be enough for any practitioner to have seen me to know that I was physically ill (and, indeed, that’s what they saw and various blood tests and exams showed), but since clinical common sense was not enough, let’s look at the evidence that takes the human factor out of the equation. We have my EM, at the site of a tick bite. That’s evidence that the CDC and IDSA don’t even dispute. We have the multiple blood-test results that show that one-and-a-half years after infection, the microbes and antibodies were still in my blood. Evidence? Check.
  • Chronic: Chronic disease refers to a persistent and lasting medical condition. In some cases, I’ve seen cut-offs of months or years used to define chronic. Six months is sometimes used, or a year. I had positive test results of infection twenty months after exposure. Three-and-a-half years later, I’m still sick. Chronic? Check.
  • Infection: Here’s a good definition of infection. “The pathological state resulting from the invasion of the body by pathogenic microorganisms.” Borrelia burgdorferi, “the Lyme bug,” is a bacterium in the spirochete family, similar to the microorganism that causes syphilis. Babesia microti is a parasite that causes babesiosis, similar to the parasite that causes malaria. Infection? Check.
  • Persistence of illness after IDSA’s protocol has been performed: I was on amoxicillin from July 2007 through October 2007 and cefuroxime from October 2007 through February 2008. That’s a lot more than 28 days. Yet, as is clear from the evidence of chronic infection above, I was still sick. Persistence? Check.

So much for my easily curable, noncontroversial illness. That’s the IDSA Lyme disease, not my Lyme disease.

I sure wish the gap between the two wasn’t so wide. I sure wish my illness had been quickly and easily curable.

If the IDSA’s picture of Lyme matched the reality of it, that tick bite would have faded, along with my rash, to a distant memory.

If that had been the case, not only wouldn’t I have had to suffer the physical damages of this illness, I wouldn’t have to write a blog to counteract misinformation claiming that my experience doesn’t count, and that my disease doesn’t exist.

Thank you for reading.

-Sharon, the muse of Gadget (who also had Lyme, and who also required treatment much longer than he was “supposed to” have), the spirit of Jersey (who seems to have escaped the plague), and Barnum, who gets tick-checked every night from March through November and has had over 60 deer ticks found on him in his first year alone in rural Massachusetts

P.S. Please support this effort. Comments are very welcome. I also encourage you to visit the following other bloggers who say “My Lyme Disease Is Not the IDSA Lyme Disease.”

I believe Ashley spearheaded this effort; she is a fierce and eloquent advocate for Lymies. Some of the other bloggers also have MCS, like me. Candice is one with severe MCS and food allergies, and a moving story. Heather’s tale is one of the most compelling I’ve ever read, on any topic; please read it.


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