Posts Tagged 'cognitive disability'

Two Things Service Dogs Can Do that Assistive Technology Cannot (with a side note on brain injury)

I’m having that feeling again. That feeling of being in a partnership. Of having a service dog I can rely on. It’s been three years since I last had that feeling, and boy, am I happy it’s back.

Not that Barnum and I don’t still have plenty to work on. We do. But here’s some of what he’s done today, and I’ve only been up five hours (and he was out on a walk for one of those hours):

  • Helped me undress for my bath by removing two socks, two long-sleeved shirts, and — with coaching — a pair of sweatpants
  • Shut my bedroom and bathroom doors to keep the heat in (repeatedly because I and other people sometimes forget to shut them, see below for memory issues in humans)
  • Shut and opened both doors when I needed them opened
  • Went to get my PCA while I was in the bathroom (opening two doors to get to her)
  • Retrieved my walkie-talkie, a plastic lid, and a pen when I dropped them
  • Retrieved my slippers for me (a few times)

And other stuff which I’ll describe below.

The reason I’m writing this post is that several times today I was able to rely on him for things that I hadn’t planned on needing him for, and it reminded me of all the times people have suggested I use this or that piece of equipment — instead of a service dog (SD) — for a particular problem. And why those solutions sometimes fail me. That’s why I’ve categorized this post under “Waspish Wednesday,” even though it’s not Wednesday, and it’s mostly a celebratory post. It’s also because now that I am enjoying the partnership I have waited (and worked) so long for, I am remembering (with some bitterness) all the unhelpful suggestions of people who have told me that I didn’t need a SD for what I need a SD for.

Not that I don’t use or believe in assistive tech (AT). I do. I use a lot of AT, and I am a big believer in people having access to as much AT as they want to improve their quality of life. And I also believe that there are some situations for which AT is much better than a service dog.* And, they are not mutually exclusive. They are complementary — in my case.**

So, here are two things that service dogs can do that assistive technology (with very few exceptions) cannot:

  1. Think
  2. Move on their own

For example, one of the main things I use Barnum for is communication. I have written about this quite a bit, especially in recent posts. When Gadget died, I got a “doorbell” that became my main way of getting my PCAs, but it had a lot of drawbacks that made me miss Gadget all the more. A lot of people over the last three years have suggested a lot of equipment ideas to rely on instead of Barnum. They are a bell (already have it), walkie-talkies (already have them), and an intercom (have it but can’t use it). Even though I use the doorbell and walkie-talkies every day, I still need Barnum. Here’s why:

  1. My assistants and I are human.
  2. I have neurological damage that impairs my memory.
  3. I have MCS (multiple chemical sensitivity).

Let’s start with #3. The reason I can’t use the intercom is the same reason that for quite a while I couldn’t use the walkie-talkies or the doorbell — they are plastic, and they offgas plastic fumes when they are new. The doorbell took the least amount of time to offgas. I don’t remember now — I think it was just a few weeks, primarily because the only part I have to be near is tiny and the bigger, smellier part is away from me, in the kitchen. The walkie-talkies took a year to offgas. The intercom we have had for over two years and it still reeks to high heaven. I doubt I will ever be able to use it.

Problems #2 and #3 are just variations on a theme. I’m human and my assistants are humans, therefore we sometimes forget things. They have sometimes gone home with the walkie-talkie. They sometimes forget to bring it with them outside. They sometimes go to the bathroom or to get the mail and don’t take them with them. One of my assistants refuses to carry it because of the electromagnetic radiation it emits.

Plus (#3) I have a disability which specifically fucks up my memory, therefore I forget a crapload of things all the time. Every day, many times a day, I forget things, often the same things, repeatedly. All these ideas you might have for dealing with this? Writing things down? Carrying things with me? Velcroing them to me? Timers? Alarms? I’ve tried them all. I already use them all. And it’s still not enough. So don’t fucking suggest them. Please. (That was the waspish part. Could you tell?)

Anynoodle, what I have done in the years since Gadget’s death and Barnum becoming a reliable SD is use the doorbell, and more recently, the walkie-talkies. They certainly are much better than not having them, but there are issues. One is that sometimes I can’t speak, so when that happens, the walkie talkies are about as useful as the doorbell in that they can convey only one piece of information: “I am trying to get your attention.” This can be very limiting, whereas having Barnum bring a note is much better, as I explained in this post.

Another issue is the brain damage/memory thing. I lose these pieces of equipment. A lot. I used to lose the doorbell and the walkie talkies constantly. Frustratingly constantly. Because the problem was that when I taped the doorbell to my overbed table, I didn’t lose it, but I could only use it when I was in bed and not to call for help from the bathroom. Then I got the walkie-talkies, mostly for their portability, and I’d forget to take them with me to the bathroom. (Oh, and someone suggested — after I explained about my memory — that I keep another set of walkie talkies in the bathroom at all times, which tells me that this person doesn’t use walkie talkies because they have batteries that must be charged every night, like a powerchair. If I left them in there all the time, the batteries would be dead when I need them. It also assumes I’d be able to find and reach them in the bathroom which is used by other people. Or perhaps she thinks I should buy three or four sets of walkie talkies?)

Then, I got the brilliant idea of Velcro! I velcroed the doorbell and walkie-talkie to my overbed table where they are within reach and cannot escape. I also put Velcro on my powerchair so I could bring them with me. This has worked very well for the doorbell in that I just leave it velcroed to my overbed table all the time, so I never lose it. But for the walkie-talkie, sometimes I leave it stuck to my overbed table, and I can find it. Sometimes I lose it in my bed. Sometimes I attach it to my chair and then use it when I need it, but more often, I attach it to my chair and then can’t get to it because I’m in the tub or on the toilet and my chair is out of reach, or I have gotten back in bed and left the walkie-talkie attached to my chair, and I can’t reach it, etc. (The bathroom that has the tub is not wheelchair accessible.) Or I bring it to the bathroom with me and put it next to the tub/toilet and then forget to take it with me when I leave and then it’s in the bathroom and I’m not, and I can’t get to it. See how helpful that piece of AT is?

Ahem.

But NOW, I have a working SD. So, today when I wasn’t sure if I needed help getting dressed or not after my bath, but I really wanted my PCA to go make me lunch because our time is limited, I could send her off to the kitchen with the agreement that if I needed her, Barnum would come get her (because I had left the walkie-talkie on my powerchair and also forgotten I had it with me, whereas Barnum’s a lot harder to miss!). And when I stood up and realized yes I had used too many spoons and I needed to get to my chair FAST before I fell over, I could have Barnum open the door ahead of me and skeedaddle out of the bathroom so I could make it to my chair, as opposed to having to sit back down on the toilet, wait for my PCA to come back, help me up, and get to my chair, which would used more PCA time and even more of my spoons. And when I dropped the walkie-talkie (that I’d forgotten I’d brought and therefore didn’t think to use and therefore left it behind), Barnum picked it up and brought it to me. And when I forgot to put on my slippers and they were in the bathroom and I was already in my chair, I could send Barnum back into the bathroom to get them.

You cannot call your bell or walkie-talkie or slippers when you leave them somewhere. Well, you can, but they won’t come. They also won’t retrieve things. They also won’t open doors to get to the thing or person you want.

I love my powerchair. I would be in trouble without it. But sometimes if I am feeling well enough, I prefer to walk to the bathroom, for example. (I try to always use as much energy as I can without overdoing; it’s a very difficult balance.) Sometimes it is fine and good to walk to the bathroom. Sometimes it’s impossible and I don’t try. And sometimes my powerchair is charging or I think I’m doing better than I am, and I discover that I have used too many spoons (especially now that I’m on Clindamycin which means I’m spending a lot longer on the toilet than I’m used to!) to get back to my powerchair, my doorbell, my walkie-talkie, my bed, and I might need my service dog to help me get up and walk back, or to open the door, or to get a human assistant to bring me my chair.

Choices. Having a service dog offers me choices. Because I can choose what needs doing in the moment based on what and how I’m doing and what I need, and I can ask him to do that particular thing, and he can do it nearby or at a distance. He can get and bring the thing or person I need. Because he can think, and he can move all on his own, without a joystick. Though he does bring me a lot of joy.

– Sharon, the muse of Gadget, and Barnum, SD

*I believe that wheelchairs and other mobility aids are generally preferable to service dogs for ongoing mobility needs such as balance, walking, etc., because frequent use of dogs as mobility aids can be physical damaging and dangerous to the dog. If you are a full-time wheelchair user, I think it is better to use a powerchair than to have a SD pull a manual chair. If you need walking assistance frequently, a cane, walker, or chair is probably a better bet. However, sometimes you need both. For example, when I have had my powerchair break down, I have used a manual chair with a SD helping to pull it as an emergency backup measure.

**I realize that some people use human assistants or canine assistants or AT instead of one or the other or both of these, and I fully support everyone having the options to make these decisions because no two situations are the same. Everybody’s situation is unique. For example, I know a lot of guide dog partners who do not use a cane because their guide dog is a far superior navigational aid, and I also know people who use both when training a dog or when an issue arises and people who prefer a sighted aid (person) or a cane. And all of us who partner with assistance dogs have times when we cannot use our dogs — when they are sick or have died or have retired — and we have to make do with AT or people in the meantime. I know people with physical disabilities who use SDs so they don’t have to rely on PCAs or certain types of AT, and I support that, too. In my case, I rely on all three, and I am fine with that, too.

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

This post is for the June Disability Blog Carnival at never that easy. The topic is “Arbitrary” — anything on disability you want people to read. I chose to reprint a post that I wrote in May of 2011, with this new introduction. May is both Lyme Awareness Month and MCS Awareness month, and I was trying to blog a lot on both illnesses that month.

The reason I chose this post is that it’s not at all like my typical posts. As an editor and proofreader, I usually try to have “clean” posts — proper capitalization, punctuation, grammar, and spelling. In this post, not only did I not conform to standards, I actually stopped myself from backspacing to eliminate errors, something I normally do a great deal. I didn’t do this to be annoying. I did it for two reasons, and I’m reposting it for a third.

One reason is that when you’re severely in pain and exhausted, things like holding the “shift” key and another key at the same time to create a capital letter, or needing to take a hand off the keyboard to move the cursor and then get that hand back on the keyboard to correct an error, can be too darn hard. That effort often keeps me from writing. I really wanted to blog that day, and I didn’t want my pain and illness to stop me. This was me saying, “Fuck you,” to my limitations, and to the tyranny of internalized ableism.

The second reason is that I do a great job of “passing,” especially in written form, around my cognitive impairment. People who are not part of my day-to-day don’t understand — and often, really, don’t seem to believe — the amount of cognitive impairment I have. Being basically smart, well-educated, and articulate, I have more to fall back on than someone who didn’t have these benefits. Also, there are tools like spell-check and grammar-check, both of which I use. I usually reread a post, sometimes several times, to fix errors, and I do a lot of backspacing to fix errors I find in previous sentences.

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

The third comment is for all the writers and other language snobs out there, of whom I am one! I am a total “wordie” (as food is to foodies, words are to wordies — or logophile, if you prefer), a grammar geek, a punctuation nerd. I make no apologies for this. AND, there is a difference between enjoying and finding pleasure in well-written prose, in praising readability, and looking down on people who make errors or who don’t know a lot of the basic rules of grammar, punctuation, and spelling. As a writer, I have a lot of online friends who are writers, especially on Twitter. I can’t tell you how many times I read snotty comments about people who write in all lowercase or people who misspell or whatnot. I wanted to reprint the post below to say, “Hey! There are sometimes good reasons why a person might not use the shift key. There are physical and cognitive disabilities that might make following basic rules of grammar onerous or even impossible. Check your ableism at the door, please! We still may have something worthwhile to say.” I believe the post below does have something worthwhile to say, both because and in spite of the copious language errors.

– Sharon

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


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