Wednesday, September 17, 2014

Sjogren's and Dry Mouth/Dry Eyes: Products That Help

Sjogren's is a common disorder for patients with autoimmune and rheumatic issues, either as a primary condition or secondary to other health conditions--it's characterized by very dry mouth and dry eyes and can affect many organ systems. Stomach issues can result--because the stomach does not produce enough acid to digest your food--as can genitorurinary symptoms, skin problems, etc.

Patients without Sjogren's often likewise experience very dry mouth or eyes as a side effect of a medication or multiple medications--and the result can be uncomfortable, distressing, and even painful. So rheumatology patients are not alone--cancer patients, for example, often experience the same symptoms.

If you're wondering if you have Sjogren's, the Sjogren's Foundation offers information you can look at and discuss with your doctor:

Fortunately, there is help for Sjogren's. A number of suggestions and products are listed below, but feel free to include any you like in the comments--other people can definitely benefit. These suggestions aren't intended as medical advice; please consult your specialists to find out what products will work best for you, will work with other medications that you're taking, etc.

-Biotene mouthwash, mouth lozenges, gum, and artificial saliva (this is a sweet tasting gel, not as gross as it sounds). There are other brands!
-Dental spray. I don't currently use one, but Therapsray worked well for a while. (Now that I'm writing this, I should pick up some--it really helped reduce my cavities and gave great relief.)
-Clinpro-this is a prescription toothpaste with extra fluoride for patients who have experienced many cavities.
-There are other remineralizing toothpastes and other toothpastes with fluoride that dentists recommend--check to see what works best for your situation.
-Numoisyn gel mouthwash (prescription; coats the inside of your mouth)--this is very soothing!
-Numoisyn tablets (prescription; dissolve in your mouth and moisturize it)
-Salagen (prescription; generic is pilocarpine; pills for saliva production; this bothers my heart some--I check meds with my rheumatologist as well!)
-More frequent dental cleanings (3-4x a year)--you actually save money because of fewer cavities.
-Fluoride treatment at each dental cleaning, just like the little kids do! You can also have sealants put on your back teeth again.
It's good to be vigilant with dental health to avoid cavities from lower saliva production as much as you can.
-Gum with xylitol (cavity fighting); keep away from pets--very toxic to them!
-Watch mouthwashes--many have alcohol, which dries the mouth even more. Ask your dentist about products that are alcohol free or moisturizing.

-Restasis (prescription; cyclosporine). This provides the best relief, as it addresses the cause rather than just the effects; however, there are long-term side effects, so it's worth discussing using it periodically.
-Systane and Blink. Systane makes several kinds of drops, each of which work differently; some don't work with contact lenses (so I've been told). I like their Ultra best. Recently Blink works better for me. Not sure if the formulas changed or my eyes changed.
-Contact lenses that work better for dry eyes; sometimes these can help hold in moisture for a while (CibaVision AquaComfort and Proclear)
-Eyeglasses when you have to!
-Don't forget your sunglasses--steroid use can make us more prone to cataracts over time already.
-I'm told eye masks are good for sleeping (like many people with connective tissue issues, I sleep with my eyes partially open).

For me, Sjogren's is in and of itself painful, often in an entirely different way from arthritis. A flare of Sjogren's can follow a stressful event or major pain episode. My eyes will feel dessicated and I will wake up unable to blink or close my eyes. There's no way to describe how dry your mouth feels--it's unlike any amount of dehydration. Then there's subsequent fatigue and joint/muscle pain that feels characteristically different from what I feel with an arthritis flare (especially the fatigue); it really is qualitatively different from my usual arthritis symptoms, with a different kind of rigidity. I'm curious if others feel it's different from arthritis fatigue and pain.

I hope this post is helpful to others in getting symptom relief from flares. Again, feel free to add your own suggestions in comments!

Monday, September 8, 2014

How the Medical System Fails Sick Kids

Notes from my son's illness at this time 3 years ago (see symptom diary from September below). From this, his rheumatologist concluded he had pain amplification and was just imitating me, implied I wanted him to be sick and take medications, and dismissed him from care.

His illness was sudden onset, preceded by a virus.

The medical system fails people. I'll let my notes speak for themselves. Five months between appointments with no treatment is also inadequate.

Rheumatology Appointment: 10/4/11

Goals for appointment:  continue moving toward diagnosis; set treatment goals since his issues are now chronic; notes needed for IEP at school

Symptom updates:
He did not improve a lot over the summer, though he was able to get more rest and could thus do better on a daily basis than he does now during the school year. 

Sleep specialist said it’s taking him a long time to go to sleep but once he does his sleep quality is really good—no obstructive sleep apnea, no disruptions of his sleep.  He said there is one blood test to run if you run other bloodwork (Note: I don't remember what this was, but rheum did not run any more bloodwork).  He believes he probably does have a rheumatologic issue, and that’s what’s creating his need for more sleep.  Says his brain waves/sleep patterns are not characteristic of someone with fibromyalgia.

Psoriasis on inside of elbows (has widened out), heel pain, back pain periodically.  Other joint pain periodically. Extreme fatigue all the time.

Frequently asking for ice packs and heat packs for pain

We always get him up and dressed and ready for school whether or not he can go; he is ready well before school starts, though sometimes he goes back to sleep in his chair while waiting to leave or in the car on the way.  He is sleeping 10-12 hours a night, every night.

Excessive absences due to extreme fatigue à strongly considering homeschooling because his instructional time is so fragmented.

Could not go to pool party/swim park with school friends at end of school year.  He did not have enough energy to do a birthday party this year, though he really wanted to and I would have done anything he wanted for it.  Cannot go on fun outings like arboreteum, outdoor festivals, museums, zoos, shopping, bookstores—everything our family likes to do.

Could not do Scouts in evenings this summer despite not having school because of pain. He loves Scouts.

Continues having the back pain he’s had since 2008 and before, despite shoe inserts now recommended by pediatrician/podiatrist.

Swam at grandparents’ this summer and did some exercises at home; right now, he can barely make it through school day and homework and misses 1-2 days per week.  He is doing makeup work at home and his teachers say he is a dedicated, hardworking, sweet student.

Struggling with PE some days from joint pain, muscle pain, and fatigue.  Difficulty sitting on floor there every day.

Crying on one day from pain this summer.
Autism and the fatigue/pain are like the perfect storm in the mornings and he has difficulty getting into the school building sometimes.  ADD evaluation in September by school shows him to be very low on energy (rates 1 on almost everything, not fidgety at all, good concentration when he’s there)

Symptom diary for 2011-2012 school year:
Most days—has difficulty with pain that interferes with violin practice (wrist, back, or fatigue).  He will practice a few minutes, then stop for 2-3 minutes; extraordinarily difficult for him.  A few times he’s been able to practice an hour a day. He likes to play violin—was one of the top 2 students in his grade last year, received award for practice time.
8/18 – wrist pain severe enough to make him cry
8/22-severe hip pain in morning, limping from it (pointing to hip socket, not rear or SI joints)
8/24 –leg and foot pain—needs ice pack
8/27-crying from pain and fatigue at Abilities Expo, though just sitting in a camping chair; slept on 5 hour drive back that night
8/28-sleep study; missed school
9/5 – Labor Day—slept 12 hrs; we woke him so he could be able to go to bed that night, but he would have easily slept another 2 hours.  Very sluggish, half asleep on brief errands, eyes half-lidded.  Could not go to grandparents’ for family birthday party/swimming.
9/6-leg pain at night, refusing shower because of pain and fatigue—took bath instead
9/7-extremely fatigued that morning, tried to get back into car 3x—his dad and assistant principal had to help him into school, get into locker
9/8-better with school, severe leg pain
9/9-crying before school, refused to get out of car—I had to talk him into going into school on phone;
Kept saying “I need energy”
9/10-ate out; quick trip to Petsmart and to get sandwich food from Target—begging to home while at Target even though it was a very fast trip
9/11, 9/12-severe shoulder pain, can’t practice on violin
9/12-psoriasis patch of several inches on inside of one elbow
9/14-leg pain, heating pad
9/15-leg pain, heating pad; protests shower because of leg pain
9/16-comes back home after 2nd period, says fatigue is like he’s wearing lead weights; missed school the rest of the day
Weekend of 9/16—could not get him to go anywhere with us on the weekend until we made him get out with us for an hour to Petco/Party City/bookstore—he complained of fatigue, begged to go home until we did
9/19 – 9/20—better with energy, mornings more smooth
9/20 evening-difficulty showering because of physical fatigue / difficulty sleeping despite Tylenol
9/21 – difficulty waking, has to miss school; heel pain
Psoriasis on inside of 2 elbows; pain in foot.  Having difficulty sitting on ground in health/PE class from pain—has to use a chair
9/24, 9/26 and 9/27-missed school from fatigue; had respiratory infection the last 2 days but extraordinary fatigue with it; asking for hot packs for legs this week
9/26-left wrist pain
10/1 Back pain, could not do violin. 
10/2—More back pain.  I asked him where it was—thoracic, right in middle of vertebrae, not to sides of it.  Crying about having to eat dinner at grandparents’ house because of fatigue
10/3-mild sore throat, fatigue
10/5-sore throat, fatigue. Felt like going to fair; within 30 minutes, he was wishing we brought the manual wheelchair for him.  Complaining of heel pain within 10 minutes, back pain soon after.  We could only go to shows/look in a very limited area because of his back pain and fatigue.  Evening—crying from having to shower

Behavioral results from sleep issues/illness:
9/12-asked pediatrician about Ritalin to at least help him with concentration; she wants an ADD eval first (more appointments we can’t afford, expensive), despite ADD eval from school.  Symptoms since 1st grade, PDD/autism, but now more difficult to manage.  Brain fog?? (notes below)
Problems answering questions; “I don’t know” to everyone (regression to earlier autism behaviors)
Gets distracted mid-sentence when we’re asking him something from fatigue or inattention in mornings or after school; I will have to repeat question many times—can’t focus on what we’re saying.  Much better on weekends.
Have to repeat requests of him many times to get him to do something (forgetfulness, not willfulness; honest problems with short term memory)
Gets distracted mid-long-division or writing assignment

An A student who did homework easily on his own last year; still making As but struggling because of fatigue

Wednesday, October 30, 2013

Assistance Dog Blog Carnival: Lessons from Others

This post is written for the 13th Assistance Dog Blog Carnival, hosted by Brooke Sillaby at Ruled by Paws.  Please check back at her blog in the next few days for more posts on the topic "lessons." Archives of previous carnivals may be found at the Assistance Dog Blog Carnival webpage.

As a first-time service dog handler and first-time owner-trainer, I've struggled at times to determine how to break down complex tasks and how to teach tasks that seem impossible to teach. For adding new concepts to challenge my dog (and me!), I frequently turn to Youtube videos offered by a number of trainers and teams.

One Youtube poster whom I particularly love is Donna Hill, who subtitles and narrates the action in her videos beautifully. She is extraordinarily good at breaking down tasks creatively and giving positive reinforcement via clicker. Because what she does is fun and often challenges her dogs to solve a problem, they love to work. One of her recent videos shows that some common habits of dogs, like leash pulling, are reflexes from being pulled in the opposite direction, kind of like Newton's law. For every leash pull in one direction, it seems there is a an equal pull from the dog or owner in the other direction. Donna demonstrates some ways to work with the opposition reflex to shape the behavior you would like from the dog:

So that you don't miss any, be aware that Donna has several different categories of videos; one grouping is specific to assistance dogs. Don't forget to click "Load More" at the bottom of each page, as I initially did--she has a lot of videos. (Update: here's a helpful index to her blog:

Recently, noticing that my dog doesn't alert as often to my dysautonomia, I wondered what specifically he alerts to, and if he alerted to my scent rather than slight changes in my demeanor, as I'd assumed. I knew that diabetes alert dogs use scent boxes to train but was unable to find more information until I turned to Youtube and saw that all you do to begin is put a small morsel or target item in a tiny container. I use little bitty tupperwares similar to what's shown in the video below, MultiAnimalCrackers' "Fun Nose Work Ideas." You click the dog for finding the targeted item using the command "find it," "scent," or another command of your own designation. I use a placebo container as well--and my dog is 100% accurate at targeting the correct container. So now I've wiped a tissue across pulse points or areas that perspire (yuck, I know) when my blood pressure and heart rate are normal and placed that in a container for my dog to find. Next I need to capture my scent when my dysautonomia is extreme--targeting when my heart rate is on the cusp of tachycardia or low blood pressure will only confuse him. I'll encourage him to find that scent box rather than the one with my normal scent. This may work to increase his sensitivity, or it may not work at all. It's good to experiment.

In the video, the trainer first places treats around the room for her dogs to scent and find. She hides them in cups and under containers. She then uses the small containers with one scent inside just one of the containers for the dog to find. She also works with a teabag, asking the dog to target/nose it, and then hiding it under a cloth, clicking when the dog correctly targets the item. She then rubs her own scent on a cloth for finding, working up to having the dog out of the room while she hides the cloth.

Next in our training, I'll start challenging my dog with some of the techniques Donna Hill uses, such as diluting scent and setting up a scent wheel.  

It's also nice to observe teams who have very generously videoed themselves. One service team I've particularly enjoyed watching is Veronica Morris and her dog Olivander, a standard poodle who moves gracefully and ignores distractions so very well.

Olivander walks smoothly through the aisles, keeping close at Veronica's side as she walks through the aisles. Veronica gives Olivander commands to leave the Pyrex alone, and to sit and stay while she examines merchandise. The tester gives Veronica periodic instructions, such as to try walking alongside Olivander with a grocery cart. Veronica gives him lots of "good boys."

Olivander also does a "down stay" in front of the escalator.  The tester applies very light pressure to Olivander's tail with her foot and steps over him--challenges a service dog may encounter in public regularly. I didn't know some Targets have escalators, but Veronica's does, and she and Olivander descend it together.

Hope for Christy is another good resource, especially for people interested in dogs for mobility work and to assist with TBI needs. Kikopup, while not a service dog trainer per se, is a dog trainer with an extensive collection of videos demonstrating an astonishing variety of tasks.

I hope you enjoyed some of these trainers and teams. Please feel free to share others you like in comments.  If you have difficulty commenting, please email me your comment, and I will post it on the blog (more about recent blogger spam difficulties on my last blog post, "Maintaining Accessibility While Managing Spam").

Blog Comments--Maintaining Accessibility While Managing Spam

Today I noticed had 20 new comments on my last post. These were all spam that made it through even though my setting is for every comment to be manually approved by me, a setting that is still unchanged. I then saw there were about 50 more spam posts on old posts. Since a lot of spam is inappropriate, I'm alarmed that it was there for months without notification to me.

Not all spam is going through, however--185 were still in my spam folder, though I delete those regularly; daily there's a stack of them. It's enough to make me not want to look at my blog.

The only solution I can find to be fairest both to me and to as many people as possible is to go back to Open ID/manual approval of comments so that anonymous comments never go through. That excludes most spam, but it will prevent some commenters who don't have or want a google ID or OpenID from commenting. If you are one of those people, please email me your comment at fridawrites @ gmail, as I want to hear what you say.  I will be glad to copy it and post it for you and put your name on it.

I don't want to add word verification back in--that excludes people with visual and some mobility issues. The word verification text is often hard for me to read even without being limited in those ways.

My apologies for the inconvenience to anyone! I love hearing what people think and don't want to miss your ideas/feedback, so again, please email.

And now I go back to finishing my ADBC post.

Wednesday, May 8, 2013

Blog Carnival Drawing Winners!

Using the Random Number generator at, I assigned each entry a number in the order that they were posted.  The number generator came up with #2 and then #3; I am excluding myself since I already have both of these items.

So Carrie and khills, you are the winners of the contest!  Carrie gets first choice of the item she would like, and then khills.  There's the Partner Link leash or a treat bag from Cody's Creations or a collar with tag changer from Terri; see the original call for posts for the links.

Please let me know which item you select in comments here, and then when you get a chance to further decide, please email me at fridawrites at gmail com with your color/design and size for the collar, if applicable, as well as your address.

Congratulations, and thanks for participating!

Monday, May 6, 2013

Eleventh Assistance Dog Blog Carnival: Resources and Tools

Welcome, readers!  Please enjoy this tour of service dog blogs and explore some of the resources and ideas mentioned. Please give some feedback to the writers if your energies permit; you may wish to visit past ADBC collections if you haven't had the chance to do so.

Thank you to each writer for your blog post--they are all thoughtful, wonderful, and detailed. I for one will be using them; I know others will as well.    

I've categorized the posts by topic; this means some posts are listed in more than one place if they cover multiple topics. Sharon has graced us with two posts, so make sure you don't miss one of them.

I want to make sure I haven't missed anyone before I do the drawing--I plan to do that tomorrow evening!

Friendship and Community

In "If It Weren't for the Internet," Brooke of Ruled by Paws tells us how meeting other guide and service dog teams online has helped benefit her training of Cessna and Rogue.  Whether we self-train or reinforce an organization's work with our dog, the encouragement and tips provided by others help build our confidence and help us feel connected.  Indeed, community may be the most important building block for what we do.

Carrie, awaiting her first service dog, tells us in "Diane Sawyer Arranged for My Service Dog" how an ABC program helped her find Canine Partners for Life (CPL). CPL provides medical alert dogs among other kinds of service dogs. In the meantime, Carrie's family goldendoodle has begun alerting at home. Her story reminds us of the importance of public awareness of service dogs, so that someone who can benefit knows to apply; there's a link to the ABC video so you can watch.

Flo of A Mutt and His Pack has recently had the difficult experience of having to return Strider to his breeder since he was protective in public.  She shows that breeders who care about the needs of service dog owners are important both in selecting a good puppy candidate and for help and placement of the dog if the match doesn't work for public access.

We all know how what enthusiastic workers our dogs can be--sometimes we may feel like a human treat dispenser!  Dogs can start manipulating us for rewards, and we wonder who is training whom.  In "Yes, he can," Patti B of Plays with Puppies describes how another dog trainer helped her to reward at the right time, making public access much easier.   

Nothing is better than seeing our dogs romp and play.  Sometimes we may have the energy to join them, but at other times we need some toys to occupy them while we have more difficulty being active. In "A Spoonie's Guide to Dog Toys," Sharon shows us some food-based toys that will help engage our dogs and also writes about meaty bones and antlers, giving us safety tips. She also provides good information about kibble and what works well in the toys. 

Flo covers additional toys, such as bully sticks, Air Kongs, Chuck Its, and hunting bumpers (great idea!).

Those of us with atypical breed service dogs often experience some grooming challenges complicated by our physical disabilities. Our bloggers give some suggestions that cover basic grooming, doggy stress management, and more complex grooming such as dematting and getting paws trimmed closely.

Khills shares photographs of her beautiful creme golden retriever, Shai, in her impressive post "Grooming My Service Dog Without the Groomer: Using Choice Grooming."  Shai has long, wavy curls requiring attentiveness to keep her looking sharp for public access, especially as she likes to go mud-splashing.  Khills includes videos that show us how to keep your dog calm and stress-free during grooming. If you have someone else help with grooming, you will want to have him or her read this post as well--it's definitely one to revisit for instructions. Her photos are quite a treat!  

Sharon wrote "A Spoonie's Guide to Dog Grooming Tools and Tips," which describes shears, clippers, blades, and de-matters that you will want to know about if you have a heavy-coated or curly-coated dog. Her instructions for these tools are invaluable. She also has a not-to-be- missed video showing many of the tools and what they do, including the Andis Pro-Clipper and TDQ blade. And she gives more tips to help keep your dog relaxed and unstressed.   

In my post, "A Few of My Favorite Things," I've described the Andis Pro and the TDQ blade and how, thanks to Sharon's advice, they have saved us all many hours of misery, stress, and pain.  If you have a dog you need to clip, these are for you!  (You can use a different blade with the Andis if you want your dog's coat longer.)

Flo recommends the Furminator, as does Khills--apparently that is a must-have to look into!

Working Equipment
Karyn of Through a Guide's Eyes has a border collie rather than a golden retriever or a lab.  Border collies' smaller frames make finding equipment that really fits difficult, so she has altered some equipment and made her own. "Essential Creativity" gives us some favorite finds from various companies, including a clicker leash she modified (what a great idea!). Karyn lists a number of sellers whose supplies work well for multiple chemical sensitivity.  If you can dream it, you can make it, or get help making it.

Flo lists a lot of vests, backpacks, and harnesses--there are some cool ones that I've never seen before (I'd like that Combi if I go back to teaching).  Like Karyn, she has had to modify some of the equipment because of her dog's stature. She's also found handles that will work with other brands of backpacks.

In my blog post, I write about a number of leashes that are useful for different purposes.  I also found out about a new one just a few days ago, the Just Ducky leash.  It's a bungee-style leash that also absorbs energy and is water resistant. I didn't notice any strong off-gassing from it--and I am bothered a lot by stronger plastics. Wheelchair users will need a huge carabiner for the ergonomic handle.


These are definitely posts to revisit over time!  Thanks again to Sharon for the opportunity to host; ADBC has helped me start writing again after several years of being unable to.

Please let me know if I've accidentally left out your post or anyone else's or if you have one to include; any oversights are unintentional. Feel free to add other ideas/links to other blog posts in the comments section over time. There are more resources/tools we could cover over time--dog foods, trainers (books and web video), more ideas for challenging behaviors or unusual situations.

ADBC makes Mondays fun! I'm already looking forward to the next one, hosted by Karyn at Through a Guide's Eyes in July.

Tuesday, April 30, 2013

Blogging Against Disablism Day 2013: Noli Me Tangere

This blog post written for Blogging Against Disablism Day, May 1.  See Diary of a Goldfish for some great writing; more will be added throughout May 1.  You can also check out previous BADD entries in her archives.

"Noli me tangere": the words mean "don't touch me." While the phrase has a religious history to it, I wish here to discuss the disabled body and public space, the ways our bodies may enter a space and seemingly invite touching or conversely, intrude upon the sacredness of public space.  In the un-nuanced public eye, our bodies are both sacred and profane.  We are untouchables yet enlightened sages.  We experience others' fear of contamination or contagion; on occasion we are reviled or cursed at or forced to leave.  Our British friends, in the midst of contentious public disability reforms, are physically and verbally attacked in public thanks to news media depicting them as scroungers.  In the U. S., some are killed over whose space it is and who belongs in it--recently, Robert Saylor, by security guards; others are almost daily prevented from entering specific spaces because of their service dogs, even this week.  While some able-bodied people look to us to dispense wisdom or inspiration, in the midst of daily navigations and negotiations of public space, we may have none.  Rarely may we just blend in.

In March, our family was banned from an art museum, first because of our service dog, then because of my power wheelchair.  We were forced to leave the museum, and at one point, I thought one of the security guards was going to knock me out of my chair.  Another wheelchair user thought he was going to hit her.  She was also forced to leave.  We were both bullied, shouted at, and shamed in front of a large crowd of families.  While it would never surprise me to be banned because of my service dog, though the ADA and state law both protect me, it did surprise me to be banned because of my wheelchair.  I felt stunned.

Really, I had no idea what being excluded like that feels like.  I expected to feel perhaps inner outrage in that kind of situation along with a stubborn American "fix it" attitude.  I did not expect to feel humiliated or less than.  But I did, for weeks.  When I'm in public, I now feel acutely different from others--it's a feeling, not a decision, and I wish I could overcome it.  I feel vulnerable and afraid and anxious, that the people who should protect me and include me won't.  After all, I was in a museum that prides itself on its accessibility.  This was no mistake. It was a new policy, and it was emailed to the security firm.

Certainly, the other wheelchair user and I worked immediately to effect change--and a number of disability scholars and activists came to my aid.  So did the NEA and the museum's corporate sponsors, as well as friends.  But how many more were affected in the six weeks prior?  And since the demands come from a museum curator in Los Angeles, how many other people has she excluded at various museums?

There are class issues at stake as well.  The museum curator sees wheelchair users as the great unwashed--homeless, careless vagrants, probably dirty, who cannot value priceless art, art that matters more than they.  She would rather exclude an Alison Lapper or a Sue Austin or a Frida Kahlo than have her art broken into shards by careless, gleeful power wheelchair users.  Should Stephen Hawking, who does still travel, visit a museum while her exhibit is there? Not good enough.  After all, it is now hers, not the public's since the public includes disabled people.  Public spaces become narrowed to private spaces, to sacred space unsullied by our kind.  While there are a lot of homeless people and poor people with wheelchairs, especially near downtown, certainly they weren't going to be allowed in.

We need to realize how easily people slip into the Nuremberg defense when it comes to disability--"I was only obeying my superiors."  Security guards and police officers, medical professionals, administrators.  Just as with racial segregation, they can physically harm you or exclude you because they are told to do it.  And our bodies are particularly vulnerable to harm.  I had real reason to worry--the security guard pressed himself into my husband's body aggressively and simply could not get to me because of my service dog, my husband, and the glass stairwell next to me (which he was pushing me into).  It never occurred to him or the other three security guards to question what they were told, nor the administrators I talked to immediately after.  And they were willing to do this in front of children, my own and others'.

People touch us, our equipment, or our dogs just because they can, because, as with pregnant women, our bodies are seen as public property.  Those of us using wheelchairs often experience damage to them from others, unnecessarily.  Those with osteogenesis imperfecta whose bones break easily, those who have autism or a developmental disorder, those who have been harmed or raped before, those who have medical procedure after medical procedure, those who like more space than others, may not want to be touched.  Our bodies are our own.  The police saw it as so important to touch Robert Saylor, to prevent him from continuing to occupy a movie theater, that they killed him, even as his caregiver pleaded for a different way.

To that I say, noli me tangere.

Sexual Assault and Disability: Medical Settings

Trigger/flashback warning, sexual assault and medical abuse discussion.

This piece written as a guest piece for E. S. Henry's Disability and Sexual Assault series at Feminist Sonar and is cross-posted at:

People with disabilities and chronic illness are particularly vulnerable to assault in medical settings, where there is plenty of privacy but not a lot of internal security.  Hospitals have done little to address this, seeing instances as isolated incidents.  Patients assault other patients, strangers and visitors walk in from the streets into hospital rooms and assault patients, medical professionals and technologists assault patients. After-the-fact justice is no substitute for prevention, measures that could ensure no patient be harmed.

Part of the problem is a lack of watchfulness.  Once as I waited in the ER with my husband, I saw how a recent sexual assault took place in another nearby ER.  Patients in adjoining rooms were left alone for long stretches of time--stretches of time that must have seemed short to busy nurses.  If there were security cameras, probably no one ever looked at them.  Another patient or a visitor could easily have access to vulnerable patients--many were left alone or family had not arrived yet--and could have easily gotten away it.  No one came into the hallway we were in for 30 minutes at a time, and a sexual assault or groping only takes minutes or less.

Such assaults happen regularly--google many variations of search terms and watch the news stories over time.  These are the ones we know about.  Most we don't.  They don't make it to the news, or like most assaults, they're not reported.  The privacy, lack of security, sedation or nonverbal status, the embarrassment of patients, shock / trauma, cultural assumptions that victims wants attention or money, one person's word against another--it all creates the perfect opportunity and the victim knows she may not be believed or cannot bring herself to speak.

One of my doctors has said it's medicine's dark secret, much as with the Catholic Church and Boy Scouts and Penn State.  Once I was told I shouldn't report, that it would destroy a whole hospital and people's careers and tear up families.  That's never been the case before.  And what about me, our family?  And all the others?

If you work in medicine, ask questions, develop real security policies--ones meant to protect patients from harm, not organizations from accusations or accountability.  Many of your chronic patients and disabled patients (there is some overlap) have been at least groped, if not sexually assaulted, some more than once.  Up to 80% of the disabled population has been sexually assaulted; 50% MORE THAN 10 TIMES (  Even men with disabilities experience at least double the rate of sexual assault.  Disabled people are also assaulted by professional caregivers, spouses, friends and family who have access, and acquaintances who know their schedules and vulnerability.  Compassion and awareness are essential.

Ferret out your Sandusky's.  Expose them to the light of day.  Ask questions.  Don't look the other way.

Monday, April 29, 2013

Gathering Entries for ADBC through May 4--and Blogging Against Disablism Day

Hi, all, because of the close proximity to Blogging Against Disablism Day, for which many of us write, Sharon and I decided to move the deadline for the Assistance Dog Blog Carnival to May 4, with a goal of publishing all the entries together on May 6.

In the meantime, Blogging Against Disablism Day takes place this Wednesday, May 1.  Goldfish hosts this large event annually, and puts in a lot of time to raise awareness about disablism.  This is its eighth year.  There is a wonderful diversity of experiences and voices represented every time, and it's very worthwhile to spend time in the days after reading as many as you can.  You'll find experiences similar to your own as well as possible solutions, advocacy ideas, and encouragement.  Whether or not you are participating, please let others both in and outside the disability community know about it, both now so they can participate and later so they can learn about the forms disablism takes.  This blogging event is a wonderful way to network with other online disability activists and scholars.

For the Assistance Dog Blog Carnival, the topic is Resources and Tools.  Let others in the service dog community know of any of your discoveries--organizations, videos, supplies, or ideas--that help make life easier for working teams and potential teams.  Anyone who is interested is welcome to participate.  If you need any help with your blog post or want to bounce an idea off me, feel free to email (fridawrites @ gmail. com).  Catch us the next time if you need to because of your schedule or your health, but if you haven't had a chance to write, feel free to do so.

And again, please provide invitations to anyone else you think would like to join us!

Sunday, April 28, 2013

Blog Post for ADBC: A Few of My Favorite Things

For the Eleventh Assistance Dog Blog Carnival, which was started by Sharon Wachsler of After Gadget, I will share a few products that have been helpful to me in working with my service dog.  

Blog carnival banner with purple doggy

The Andis ProClip Ultraedge Shaver and Oster TDQ Blade

My dog has tight poodle curls that look like a fresh salon permanent when he's freshly washed.  I love that as a multigeneration Labradoodle with a hair coat that he's hypoallergenic for both me and others with severe allergies.  He also doesn't shed--his hair grows like human hair.  That helps clothing, carpets, and floors stay clean longer.  The tradeoff is that his coat mats very badly after a few months, and his coat periodically requires a lot of care.  If it reaches a certain length, it will tangle and not dry out after a bath.

Blue Andis UltraEdge Clipper

One of my favorite new tools is my Andis ProClip UltraEdge shaver, used with the Oster Take Down Quick/TDQ blade, an extra wide style that clips very close to the skin.  Sharon Wachsler introduced me to the clipper, and it has been a life saver over our old, supposedly good one--and a back saver as well!  It will also save us lots of money over the years on professional grooming, as we'd have been forced to go to that soon. The special blade cuts through the matting without having to detangle tiny painful snarls first, and because it's so wide and has two rows of teeth with different lengths, the blade also takes less time.
TDQ blade

It used to take us six hours of work over several days to shave down our poor doggy after dematting, valuable hours we needed for other tasks.  Now it takes us one hour for his whole body without dematting first.  We still give extra attention to his ears, tails, face, and paws on a different day. He can go much longer between cuts, and his fur doesn't get tangled.  Happy dog, happy people!

We send Sharon a huge thank you!  

First, a caveat/tip on leashes and elevators.  An elevator almost closed on my dog's leash while he'd exited just as my wheelchair stopped working.  He didn't do anything wrong--I'd told him to exit because I was anticipating to be right next to him.  Instead, he was on one side of the threshold, I was on the other, and I was barely able to kick the door open on time.  I've also tried it off leash and almost got separated because the door closes so fast.  Please be careful if no one is around an elevator to help--some elevator doors close too quickly, and in the first case turning my wheelchair very slightly brought it to a stop.  If you're at an unfamiliar elevator, you may want to open and let it close once so you can see how wide the door is, how fast the door closes, and how deep it is, how you have to maneuver.   Be ready to exit together, make sure your power chair is at the right speed and that you can quickly block the door if needed.  Side-by-side.  Please pass the word to other wheelchair SD teams.

Now for the fun part.

I love leashes, of all different kinds. One of my favorites is a Bamboo brand leash, which comes in a 6-foot length or a 3-foot length that have some additional length adjustability.  The leashes are nylon and have a clip that will fit into a seatbelt holder--to avoid choking, it's better to hook it into a D-ring on your dog's vest or a safety harness (these are available at Foster and Smith).  

Bamboo brand leash in blue, showing seat belt latch and nice pocket

If you remove the leash, you can hook the leash clips around the hole in the seatbelt latch.  And voila, you have a handy door pull to take with you everywhere!  While unfortunately Bamboo stopped making these leashes, they do show up on ebay periodically, and there are some off-brands that you can find there or other places on the web.

Recently I purchased a Partner Link wheelchair leash from Cody's Creations (the one offered in the giveaway).  This leash can be ordered in your choice of color.  Its particular advantage is that its very short length can keep your dog close in crowds and places where you need to be very close together.  Longer leashes can easily get tangled in a wheelchair's wheels when you're working closely, presenting a serious danger!  However, you can make the leash longer if you need it to be or so that your dog can recline easily when you stop and rest.  One caveat: unless you can enter a doorway or another narrow space side-by-side, you will need to remove the leash there, or extend it to its longer length so you don't choke your dog.
Partner Link - A Wheelchair Leash
Young, happy woman with power wheelchair, her Labrador service dog on a Partner Link leash

A different short leash served me well when I was training my puppy.  I have severe nerve pain in my left shoulder, the side on which my dog works.  So when my dog would periodically put some tension in the leash--not even necessarily pulling--I would have a lot of pain after walking with him for a while.  And the occasional strong pulls that a puppy will do before you give him redirection--well, those could injure me for a few days.  I found a shock absorbing, no-pull short leash by EZ Step that works.  Because of the bungee effect, it doesn't tangle in the wheels easily, though it can. It has an ergonomic grip and the shock/energy from any tugs or tension is distributed rather than transferred through to your arm.  Lovely!
Gold EZ Steps shock-absorbing leash

Another leash that I don't have yet but that other people love is the Bold Leash Designs convertible leash available on Etsy.  You can use it eight different ways, including at an 8-foot length, doubled up, or around your torso so it's hands free (important for those who stand with their service dogs).  I'd like one of these or a Buddy Leash--which goes around the waist.  I have got to order one of these soon!  It would make going up and down stairs much safer when I can do so.
Photo of brown leather Bold Design leash with gold hardware, with a diagram of the eight different possibilities
And, one more leash I'm interested in but haven't purchased yet, a Surf's Up! waterproof coil leash that won't ruin in wet weather or at the pool.  The coils prevent tangles.  I would love this leash in a shorter length for service dogs, who have to stay close to us--a 3-foot would be good.  This one extends to 6 feet, but some extend to 10 feet.
Yellow-green neon coil leash

For puppies who are in training and chewing, inexpensive leashes are great--you don't want your expensive leash that you need for outings chewed up while you think he's asleep or because you've become inattentive.  Keep the good leashes put out of reach, and watch him under that restaurant table.

Patches for Service Dog Vests
Creative Clam is a great resource for custom service dog patches.  She has many designs already available, but if you need to modify one, she can do that for you.  She has an amazing selection of patches, leash covers, and other identifiers for service dogs or emergency medical needs.  Very thoughtful products, with a great design.  Her patches have gone a long way to quickly communicating with others that my dog is not one who can be distracted by the public.  That's saved me a lot of energy!  The graphic designs are very clear, easy to read, and durable.
Circular medical alert patch with words "Medical Alert Dog/Do Not Distract" centered around a caduceus  
I hope some of these products are helpful to other people or give them ideas for products they would like to invent, hack, or find.  (If you love another leash, please share it with me!)

I would like to blog about a couple of terrific YouTube dog trainers soon--stay tuned!

Note: I have purchased the products that I mention; I have received no compensation for my reviews.