Posts Tagged 'CFIDS/chronic fatigue syndrome'

Tuesday’s Tip for Tired Trainers: #6 Verbal Markers

Preface: No One Right Way

With the last tip, about clickers, there were comments about what did and didn’t work for people. That is terrific! I definitely appreciate readers chiming in with suggestions and modifications. In fact, some of the suggestions were things I knew about and had forgotten to include, so that was really helpful.

However, I was concerned that I might also be giving the impression that if one of these tips doesn’t work for you, that you are training “wrong.” i.e., that there is one right way to train, or one right tool, etc.

I absolutely do not think that. I’m doing this series to try to expand the options for those of us with limitations (which is really everybody, to some degree, but some of us have more limitations than others) so that we feel less like we are doing it “wrong” when we can’t train a behavior the way it is traditionally taught. In fact, in today’s post, I describe the ideal verbal marker, and then explain why I use one that does not meet the ideal!

I thought I’d already posted the intro below on here or on Facebook, which explains my approach, but maybe I didn’t. So, here it is (again?). My essential message is, “Take what works, and ignore the rest. (Although if you have suggestions for what works for you, please comment, because they will likely help someone else.)”

Intro: Make Your Own “Family Recipe”

This is intended as a sort of dog training “cookbook” — but not just any cookbook. Imagine a cookbook for people with food allergies: The recipes all assume that the people using them have some food intolerances, but that these will vary widely. Some recipes will not work for some people, but that’s okay because there will be an entire book to choose from. Other recipes will include ingredients substitutions (if you can’t use milk, use soy milk. If you’re allergic to soy and dairy, use rice milk or hemp milk, etc.).

Like food allergies, chronic conditions and disabilities that cause fatigue affect people very differently. A terrific solution for one is totally unusable for another. Therefore, although I do my best to include a range of options in each tip, I know that some tips just won’t work for some people. For example, I know someone who is training her own service dog very successfully who tried a variety of clickers and found that it was more trouble than it was worth. She is doing all her training with verbal markers (today’s tip), instead of clicks, and it’s working great. I will also eventually post tips that don’t work for me, but that have worked for others I know. (This is where your comments are particularly useful!)

Thus, if one of these tips doesn’t work for you, just go on to the next one (the next week or the previous week). I also very much welcome suggestions of ways you modified my tips to work better for you.

Tip #6 — Verbal markers

While clickers offer the most precise and efficient way of communicating to your dog what behavior you’re paying for, there are other tools. One tool is a verbal marker.

Verbal markers have several advantages. If you have difficulty holding, manipulating, clicking, or otherwise using clickers, or if you have memory issues that make it difficult to keep track of where your clickers are, a verbal marker is a good alternate solution. As long as you can speak one word or make a repeatable sound with your mouth that your dog recognizes, you have your marker with you at all times.

I also use verbal markers when I can’t easily hold a clicker because my hands are both occupied with something else, or when I’m concentrating a great deal on what I’m doing with my hands. I use verbal markers almost exclusively for grooming tasks, such as tick-checking, hair clipping, brushing, toenail trimming, and tooth brushing. With hands on the dog, there’s just no easy place to put a clicker, and I also find that my spoken word creates less of a “bounce up in excitement” response than the clicker, which is desirable for grooming training, when the object of marking behavior is usually to teach the dog to relax and let you do what you need to do to his mouth, paws, ears, etc.

I also usually use verbal markers when going for a walk, because it is often difficult to drive my powerchair, watch Barnum, dispense treats, and click, all at once. Similar issues can arise when using other training props, such as target sticks, light switches, dumbbells, and the like. While the Clik-Stik provides a potential solution for target stick fumblings by placing a clicker in a target-stick handle, most homemade training tools don’t allow for this convenience.

Of course, having an assistant hold props for you while you concentrate on clicking and treating is ideal – assistants are often the easiest way to skirt fatigue issues in training – but we don’t all have this luxury. Or, even if you have people who can help sometimes, it’s useful to be able to work independently when your energy is best, regardless of whether a helper is available.

Introducing a verbal marker follows the same path as any other secondary reinforcer: Make your sound at the moment the dog is doing what you want to reinforce, and deliver your treat as quickly as possible after. After a few repetitions, your dog will get the idea.

There are a lot of opinions about what the best sound to use is. One universally agreed-upon criterion is that it be a short sound. For example, “Good dog” or “Good girl/boy” take much too long to say to mark the behavior with any precision.

Other than that, in the best case scenario, a verbal marker follows these guidelines:

  • It’s a word you and others don’t often use in other contexts, such as everyday conversation
  • It’s said in relatively the same tone, pitch, and volume each time;
  • It’s a quick, staccato sound, such as “Yip!” or “Yep!”;
  • It’s a word or sound that comes naturally to you and is easy to remember.

In my experience, the last criterion has been the most important. Since mental fatigue very often accompanies physical fatigue, and since a marker’s effectiveness is based on its timing (marking the behavior you’re reinforcing), if you have to search around in your memory banks for the word you’ve chosen, it’s not terribly useful. For example, I use the word, “Yes!” This does not meet two of the criteria above: “Yes” is used often in daily conversation and it is not a sharp, staccato sound. However, when I tried using “Yep!” I just couldn’t get it out in time or remember what I’d chosen. My natural instinct was to say, “Yes!” So I went with it.

For the same reason, some people use, “Good.” We say “good” to our dogs a lot anyway: Good dog, good girl, good puppy, who’s-a-good-boy? If you can shorten the “Gooboy!” to just “good,” it will be a better marker.

I am much more of a stickler about not using “everyday words” for other cues than I am about my secondary reinforcer (marker signal). I am particularly uptight about the release cue. A lot of people use, “OK,” but everyone I know, including me, says, “OK,” frequently, to and around your dog, because it’s just ubiquitous in any conversation.

If you have your dog in a stay as a safety measure – while you are approaching to put on a leash near a road, or if you are relying on him to stay while you use him to brace as you transfer – this is a very bad time for someone to say, “OK,” and have your dog bounce up. I’ve had dogs jump up in inappropriate circumstances upon hearing “OK,” even though it wasn’t the release word I’d taught them, because so many people around them had inadvertently taught them “OK” as a release — just out of instinct. I have had to train my dogs to ignore the word, “OK.” Nurses frequently start their interactions with, “OK, Sharon,” and I don’t want my dog to stop what he was doing because of that.

A verbal marker doesn’t carry the same price if it’s used accidentally. In my experience, the fact that “yes” is a commonplace word is not usually a problem, because the way I say it when training is not the way most people say it in conversation.

However, every once in a while, someone in my household (including me), will utter a jubilant, single-note, emphatic, “Yes!” Often, we only realize this has happened because Barnum whips his head around, looking for his treat (and acting surprised because he didn’t know he was doing something “click-worthy”). I always give him a primary reinforcer (food, toy, play) when this happens. A click (or a verbal marker — any secondary reinforcer) is a contract. If you break the rules, the dog won’t know if you can be trusted. So, you might have to offer a toy, treat, praise, or belly rub if your marker gets used unintentionally, thereby tragically forcing you to make your dog happy.

Another reason your verbal marker should be a word or sound you can remember and deliver quickly and easily is that verbal markers are particularly useful for unplanned training situations, also known as “capturing” behavior. For example, say you’ve been conducting training sessions to teach your dog to lie down on her bed when the doorbell rings, with a friend or family member ringing the doorbell for you at predetermined intervals. Then, one day, you get an unexpected package and the delivery person rings your doorbell. Much to your shock and delight, your dog heads to her bed. That’s when you say, “Yes!” (or whatever your marker is) and toss her whatever toy or treat is handy on your way to the door. If that’s not possible, quietly praise and then after the delivery person has left, you can shower your dog with affection.

As with clickers, verbal markers are not the perfect tool for every person or situation. There are times I can’t speak, and there are even more times it’s too tiring for me to speak a lot, which is required if I must repeat a word, over and over. (And making a clicking sound with my tongue over and over would be even more exhausting, as well as painful.)

Verbal markers also tend not to work well over distances; the sound of a click or a whistle carries much better. Sure, some people could  yell their marker, but I have found that most people with fatiguing illnesses aren’t up to a lot of shouting. You also lose a lot of your precision timing if you yell.

What to do if you can’t use a clicker or a verbal marker? That would be tip number 7: visual markers. If you have a deaf dog, you probably already use them!

– Sharon, the muse of Gadget (who was a bit hard of hearing), and Barnum, SDiT (“Yes!”)

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.


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.


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.


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

[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.

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