Monthly Archives: December 2012

Interview with DAD veteran, Terry O’Rourke

One of my reasons for starting this blog was to document my journey of discovery as I work towards getting a diabetic alert dog. I want to share my experience with those who are curious and especially with those who are starting similar journeys of their own so that they might benefit from what I have learned. Many of the questions to which I have sought answers revolve around what it is like to live with a DAD, questions which can only legitimately be answered by actual DAD team members. This blog post is the first of several in a series where I interview people of different ages and situations who live with a DAD.

I met today’s interviewee, Terry O’Rourke, through a forum entry he posted on TuDiabetes. His eloquent words struck a chord with me and he graciously agreed to be my first interview subject. I think you’ll agree that his thoughtful, inspiring, and comprehensive responses provide a great deal of insight on life with a DAD. I am immensely grateful for his effort which exceeded all my expectations. Enjoy!

Please tell us a little about yourself. How long have you been diabetic and how did you come to consider getting a DAD?

Terry & Norm

I’m a 59-year old retired guy. I live on a 33-foot sailboat at a marina on San Francisco Bay and worked most of my career as an avionics shop technician for a major commercial airline.

At 30 years of age I was diagnosed with Type 1 diabetes. I had the classic symptoms: extreme thirst, frequent urination, and deep lethargy. When my eyesight started to go blurry, I finally went to see the doctor. The doctor put me on insulin immediately. I used syringes and vials of animal based NPH and Regular insulin. This was 1984. I’ve used an insulin pump since 1987.

Over my 29-year career with diabetes I’ve had my share of “close calls” with hypoglycemia. A few of these episodes stood out as life threatening. I am lucky to have survived.

I live alone and therefore do not have the natural safety backup that family can provide. Painfully aware of my vulnerability to severe hypoglycemia, I just toughed it out as there didn’t seem to be anything reasonable that I could do about it.

Friends and relatives often expressed concern about my welfare but I didn’t see any solution to make things safer for me. I am vigilant about monitoring my blood sugar status; I fingerstick test about 15 times per day and have been wearing a continuous glucose monitor for the last three years.

One day at work in 2009, a coworker came over to my workbench and asked me if I knew that dogs could be trained to smell and alert on the scent of impending blood sugar drops. I was skeptical and curious at the same time.

I went home that night and did some searching on the Internet. What I found surprised and intrigued me. It appeared that several agencies around the country were training dogs, some commercial and some not for profit. I found one not for profit in the Bay Area, Dogs for Diabetics (D4D). Overall though, it appeared that there was much more demand than supply and I figured that I would not likely get a dog very easily.

I also noted that there were some “horror stories” about people who paid big bucks for an alert dog and were ultimately ripped off by unscrupulous operators after handing over tens of thousands of dollars.

I never owned a dog before and had no idea what I needed to consider about incorporating a hypoglycemia alert dog into my life. Could I live in the close quarters of a boat with a dog? Would my employer allow me to bring the dog to work with me? Would the harbormaster allow me to get the dog even though he recently set a “no new pets” policy? Would I be able to fly with an alert dog, given my status as a space available airline employee traveler?

In late 2009, with plans to retire in early 2011, I thought about just postponing this idea until I retired. Instead, I decided to submit an application with the local non-profit and see what happened.

I went to a two-hour introductory presentation at their training facility. There were about nine people there that night, six of us T1 diabetics. During the presentation one of the trainer’s alert dogs signaled a low blood sugar and sure enough, one of the guests had gone low; it was verified by a fingerstick blood glucose test. Needless to say, I was impressed.

The application for a place in team training was extensive. It included a 30-day blood glucose log, verification by my doctor that I was an insulin-using diabetic, and various lifestyle and work-life questions. Lady Luck smiled on me as my application made it through the process and I was offered a place in the March 2010 training session.

Tell us about Norm, where did you get him and how long have you been a team.
I was awarded Norm, a 55-pound male Yellow Labrador Retriever, at the D4D team training session in March 2010. Clients do not pick their dog. Instead, the seven clients in my class worked with about ten different dogs during the first three and one half training days. Then the staff, after seeing how each of the dogs interacted with the various clients and also considering the clients’ work and home life, made the decisions about who got which dog.

I consider myself very lucky to get Norm. Norm is trim, smart, and a joy to live with. He and I enjoy a close relationship. He’s attentive to my every move and he’s been a great low blood sugar alerter, too.

While I am usually aware of my blood sugar status with frequent finger sticks and a continuous glucose monitor (CGM), it’s not unusual that Norm gives me the first notice of an impending low. Apparently the dogs can smell the biochemical scent of blood sugar drops before a fingerstick test can measure it. And since the CGM lags the fingerstick by about 15 minutes, my low-tech dog often catches lows before any of my electronic gadgets!

I’ve read in many places that a trained DAD can cost between $10k and $25k. Some non-profits depend on donations and provide dogs at minimal cost. Other programs depend on the recipient doing fundraising. And of course most programs allow you to buy a trained dog outright. Can you tell us which route you went and do you have any thoughts about the process?
When I did my initial Internet research on diabetic alert dogs, I was aware that some people had been ripped off. They received dogs that did not alert reliably or were not well suited to perform and be comfortable in the variety of public human settings that service dogs work in.

I discovered that ongoing support, especially early in the team’s formation, was critical to a successful placement. I decided that a not for profit organization would not only save me a large cash cost but would also eliminate the possible conflict of interest that could undermine a placement by a for profit business. In other words, a businessperson only motivated by profit could feel no moral obligation to devote any time supporting existing teams. I’m sure there are good and moral private service dog trainers out there but it takes a leap of faith on the client’s end to discover that. In the meantime a client may be committed to a dog that does not work.

Shortly after Norm was placed with me by D4D, the D4D program director/trainer left D4D to set up a new non profit to train diabetic hypo alert service dogs as well as dogs for children under the age of 12, an underserved demographic.  This new organization, Early Alert Canines (EAC), was founded in December of 2010. It has trained eight teams in 2012 and will probably train 10-15 teams in 2013. I served on the EAC Board of Directors for 18 months. Norm and I look to EAC for any support we need.

What kind of training did YOU undergo as part of the program?
The D4D team training session consisted of 11 full days over a two-week period. The first week consisted of full day sessions, Monday through Saturday. The second week’s sessions took place on Monday through Friday.

The training was comprehensive. It took nothing for granted and since I never owned a dog before, I was grateful that it covered the most basic topics. We covered obedience training and reinforcement, dog feeding, health, and exercise as well as dog first aid.

We learned about the Americans with Disabilities Act and what that meant to us in public settings. We not only learned about our rights but also our responsibilities to educate the public and be good ambassadors of the service dog team community.

Our team training time was divided between classroom lectures and public outings. We went to a variety of restaurants and rode on BART (light rail rapid transit), busses, and streetcars. We ate at McDonalds and learned how to carry a food tray and handle the dog on the leash. We walked through a Target with a list of departments we needed to visit. That’s where we learned how to use a public restroom with our dog. Getting a dog into a small restroom stall takes some finesse! We walked through a grocery store and learned how to keep one eye on the grocery shelves and one eye on the dog.

Once that demanding two-week period was over, we were not yet considered full-fledged service dog teams. Following team training we kept a detailed log of every alert the dog gave, every low blood sugar we experienced, as well as the time of day and context of the setting. In other words, what was going on when the alert or low happened? Was it, for example, during the night, at work, driving, in the grocery store or on public transit? My weekly reports often logged 80-120 events.

These reports were kept in Excel spreadsheet format and were sent to D4D every week. The trainers were in at least weekly phone contact with me and I could raise any concern that I had. I believe that this support is fundamental to establishing a good working team.

Norm and I would not graduate until Norm proved that he could consistently alert to low blood glucose somewhere in the range of 90%. We took six months to complete this and graduated about eight months after the completion of team training.

I’ve read in some posts you’ve written on TuDiabetes.com that you use CGMS in addition to Norm. Explain how that works – why use both? How quick is Norm at detecting lows compared to the CGMS? Which is more reliable? Do you ever take a CGMS vacation?
Yes, I started on the Dexcom CGM in the fall of 2009, before I got Norm. Why do I continue to use a CGM even though I also live with a hypoglycemia alert dog? I believe that when it comes to safety, multiple redundant systems offer the best overall safety. Norm is neither a machine nor perfect in his alerting. But my CGM is not perfect either. The basic nature of the CGM is that it lags fingerstick blood glucose by about 15 minutes. Norm, on the other hand, can often detect low blood glucose 15 or more minutes before it falls. In other words, Norm’s sense of smell leads fingersticks by about 15 minutes and the CGM by about 30 minutes.

I had one low blood sugar incident earlier this year that dramatically demonstrated the value of a dog like Norm. I was sleeping and Norm jumped up onto my bed to wake me. This is his nighttime alert. I immediately checked my CGM and it read 89 mg/dl with a mild downward trend. My fingerstick blood glucose, however, came in at 35 mg/dl!

I was on the edge of passing out. Once I ate some glucose tabs chased with a glass of water, I threw a big party for Norm! He grew quite excited with this middle of the night celebration that included boisterous praise and a generous dollop of peanut butter. About five minutes into the midnight party I heard the Dex CGM sing out – beep-beep-beep!

To be fair, I have had instances where the CGM caught my low BG before Norm. As I said, when it comes to safety, I think multiple redundant systems work the best.

What was your experience with getting permission to bring Norm to work? How have your coworkers responded?
When I was accepted into a diabetic alert dog team training session in late 2009, everything remained contingent on getting my employer to agree to letting me bring a service dog to work with me. I worked in an electronics shop, a relatively benign environment for a dog and one that would seemingly not impede the work of the shop. Receiving final permission from my employer, however, seemed to take much longer than I thought necessary. I didn’t get the final OK until the last workday before my scheduled two-week team training started.

I had done my research on the Americans with Disabilities Act (ADA). The ADA clearly identifies “metabolic” or “endocrine” disorders as being “disabled” and covered by the ADA. I also understood that the law required employers to make “reasonable accommodations” to workers with disabilities. An example of a reasonable accommodation would be to allow a diabetic to keep snacks at their workstation even though existing company policy forbid food in the shop. Another example would be permitting a diabetic to take their meal or break at times other than the usual times for the shop.

The first thing the company did was to send in an industrial hygienist to see if having a dog in the shop would create hazards for the dog, other employees, or for the mission of the shop. That was done and it appeared to give me a green light. Then I went to several meetings with local management, middle management, local human resources, and my union representatives. I remember thinking that this long and strung out process was overly bureaucratic. If it wasn’t for the hard calendar deadline of the team training class, I’m sure it would have taken longer.

In the end, the company was very accommodating. I was given ample room at my workstation to make a place where Norm could be close to me. I had to inform human resources where I intended to take Norm to relieve and how I would dispose of the dog waste.  Norm’s relaxed demeanor fit perfectly in this environment and he never caused a disruption.

On Norm’s first workday my workmates were all very interested in his appearance. They asked me many questions about his low blood glucose alerting and also about diabetes. I told my coworkers that they could greet Norm that day, but going forward I did not want them to interact with him. I received mixed reactions to this request.

Some coworkers immediately understood that Norm had his job and they were not to interfere. Others tried to test my response when they obviously tried to get Norm’s attention by making mouth and lip sounds. I told them that doing that would distract Norm and make his job of alerting me to low blood sugar more difficult. Norm sometimes made matters worse.  He is a very sociable dog and would encourage interaction.

After a few weeks, Norm’s novelty had worn off and people just accepted his presence. I did have continuing conflict with a few coworkers when I called them out with making bids for Norm’s attention. They were offended with my objections and probably a bit embarrassed. I had to repeat that Norm’s job was more important than being a “shop dog.” They countered with, “He’s still a dog.” And I responded, “He’s not a pet and he has a job to do.” One of my coworkers shunned me after that.

I did relax a little bit with my fellow workers as time went by but I did require that they get my permission if they wanted to pet or otherwise interact with Norm. I understood that people in general have fond feelings for dogs and they love seeing a beautiful, well groomed, and well behaved dog. I also understood that people, in general, love the idea of the common dog being socially elevated to a special position.

One of my team-training classmates was a first grade school teacher. While I was having problems with a few of my coworkers, I asked her how she handled her students in this regard. She said that she introduced her students to the dog on the first day and allowed each of them to say hi and to pet the dog. She explained that this was the only day that they could pet or otherwise interact with her dog. She instructed them to make believe the dog was invisible. She told me that her young students were very cooperative after that. I told her that I thought six-year olds had better manners than some adults!

Have you experienced any discrimination regarding public access? For example a business owner telling you that you can’t enter with Norm? How do you respond? How do you feel when presented with this kind of challenge?
I live in San Francisco, California. For the most part the general public and business owners seem aware of the ADA’s requirements. I did have one interaction that was upsetting to me at the time. There is a local sandwich shop, a mom and pop business that I went to about once a month before I got Norm. The first few times I went into the shop with Norm, no one said a thing and I was uneventfully served.

Then one day the owner told me that I could not come into his shop with a dog, I responded that Norm is a service dog. He said that doesn’t matter. He said that he had a health department inspector in recently and that the inspector told him that he could not allow any dogs into his shop. I responded that that does not include service dogs. He still refused to serve me. I told him that I was always an admirer of his business and that I was a regular customer and I was disappointed in his position. I then left the shop.

Since this was in a business district where I’ve shopped and done laundry for many years, I knew the police station was nearby. I went to the police station and talked with one of the officers. He told me that this was civil matter, not criminal. And there was nothing he could do. I had my doubts about that but decided not to argue.

I did some quick research when I got home and discovered that the police officer’s answer was wrong. Access to places of public accommodation for service dogs and their handlers is spelled out in California Penal Code. That makes it a criminal matter. Armed with this info, I went back to the police station and confronted the officer that I spoke to previously. When I cited the specific number in the penal code, he looked it up and then admitted that I was right. He offered to go speak with the sandwich shop proprietor. I told him to wait, that I wanted to make a second attempt to make peace with the local business and hopefully would not need his help.

I found a two-page document online published by the Department of Justice about service dog access to retail businesses. In question and answer format it discusses how business owners need to handle service dogs. It specifically discussed the health department concerns versus service dogs – permitting service dog access preempts any health department rules.

I printed out that Q&A and personally delivered it to the sandwich shop. Luckily, both the husband and wife owners were in the shop. The woman immediately told me she was grateful that I came back in. She said that after yesterday’s incident with me, she couldn’t sleep. I showed the Q&A to her husband and he read it carefully and finally apologized. He gave me a coupon for a free sandwich. I came back a few days later with a large sandwich order for my shop.

As a rule, most large businesses like airlines, hotels, and car rentals, know the ADA rules and have communicated their meaning to their front line employees. It’s smaller businesses that sometimes don’t understand. As in my sandwich shop owner example above, a little bit of diplomacy goes a long way.

How does Norm alert you?

Norm with his bringel

Norm wears a small pendant hanging from his collar that is about the shape and size of a wooden pencil. It’s a little bit fatter than a pencil and is constructed with a hollow plastic tube covered with a nylon weave fabric. It’s called a bringsel.

Norm was trained to place his bringsel in his mouth and then get my attention when he smells the low blood sugar scent. Norm also has some secondary alerts that are a more subtle but obvious to me. Sometimes when he alerts he stares at me with a look that feels like he’s looking right through me. When he disobeys a command, such as when told to stay down under a restaurant table, but instead stands and puts is head on my lap, I’ve learned that that is a valid alert. During the night, he alerts by jumping up on my bed and licking my face. When I get in the car, he will stand up to alert me to check my sugar. Once you’re teamed with a dog for a while you learn to read the dog’s behavior.

Once he does alert me, my compact with him is that I will check my sugar and give him a food reward if he’s right. I always carry a pouch of dog treats with me. If he alerts at night he gets a special peanut butter reward.

Norm was trained to raise an alert if my blood sugar is below 100 mg/dl and/or is dropping rapidly. I like this relatively high threshold since I like to be aware of my blood glucose if it starts to trend toward danger. I treat low blood sugar that is nearing or below 70 mg/dl. Since I like running my blood glucose below 100 mg/dl, Norm has ample opportunity to cash in on treats. It keeps him sharp and gives us practice as a team.

How often does this occur, say in a day or a week?
Six or eight alerts in a day are not unusual. But, when I’m struggling against high blood glucose trends, I may experience a full day without any time spent below 100 mg/dl. Once Norm catches a low, he continues to alert and wants to receive additional treats. I limit these follow-on treats to about one every ten minutes while I’m below 100 mg/dl. It’s interesting to see Norm’s interest in alerting drop off and he’ll just lie down and relax. It coincides nicely with an indication from my CGM that my BG is rising above the treat threshold.

Does Norm wake from sleep to alert you at night?
Yes, he does. I don’t know that the low BG smell actually wakes him up. Much like we humans change position regularly during the night, Norm will often stand up and circle around before lying down again. I think it is during these times that he picks up on my nighttime lows.

After Norm alerts and you check your BG what range are you typically in? Does he alert for highs as well as lows? If so, how high are you before he alerts?
Most of Norm’s alerts are verified with a less than 100 mg/dl fingerstick. Sometimes I check when he alerts and find I’m above 100 mg/dl but I check again after 15 and 30 minutes. It’s uncanny that Norm can smell a low BG before a fingerstick can confirm!

Norm is not trained to alert on high BG’s but some service dog handlers report that their dogs give alerts for high BG’s. I do not want Norm alert to high BG’s because I would consider that a nuisance. If you want that behavior to continue you must reward it or it will fade. Hypoglycemia is the dangerous condition I must guard against. I can deal myself with hyperglycemia because it is not an acute condition.

Have you noticed any impact on your health since you got Norm?
I have always been aggressive with watching for low BG’s, even before I got Norm. Adding Norm to the mix has given me an additional source of feedback that sometimes catches a low before I can sense it myself or a fingerstick or CGM can catch it. I can’t remember the last time I’ve had a severe (<45 mg/dl) sustained low, like one that lasts an hour or two.

I live alone and do not enjoy the emotional support that a loving spouse can give. An unexpected side health benefit from Norm is the large contribution he makes to my emotional and mental health. Norm teaches me every day to live in the here and now. His warm companionship adds to my sense of well-being. I’ve read that diabetics are more likely to suffer from depression than the general population. A service dog that provides constant companionship provides me with a powerful antidote to depression.

I would imagine that living with a service dog as a constant companion is a pretty big adjustment. Could you talk about your experience with adjusting to life with Norm? Did you ever feel overwhelmed or that maybe you had made a mistake?
I’ve never once second-guessed my commitment to Norm. He’s an easy dog to live with. He adapts to whatever schedule I want. If I sleep in, he doesn’t bug me to wake up. His breeding, I’m sure, plays a large role with this. Norm was bred at Guide Dogs for the Blind. They breed for calm demeanor and a dog that settles easily and can patiently wait for hours, if necessary. Norm is very good at waiting.

When I first got Norm, he could not climb the steep companionway stairs in my sailboat home. I had to physically lift him out and feared that this threatened his placement with me. I tried everything to teach him but he was resistant to learn at the pace I wanted him to learn.

With the help of the service dog trainers, I incorporated a ramp into his exit routine. Over the space of a few months I was able to incrementally move the top of the ramp down, one step at time. He finally was able to master the stairs without any ramp. Norm is a very fit dog and I knew it was well within his physical limits. Dog training is a mind game and I was grateful for the training help I was given to overcome this significant hurdle.

I know I will struggle with the impact on privacy and anonymity that goes hand-in-hand with having a service dog. Do you have any thoughts about this?
One of the screening questions that the dog-training agency asked prospective clients was if they were ready to give up all anonymity regarding their diabetes. I have rarely been private about my T1 diabetes. I openly tested my blood glucose at work for my entire 25-year career. My openness led to many interesting discussions with my coworkers over the years. Some sought out my advice about coping with their loved-ones diabetes diagnosis. In fact, it was a coworker of mine that alerted my to the fact that service dogs were being trained to help T1 diabetics. If he didn’t know I was diabetic, that conversation would not have happened.

Everyone’s situation is different. I had a union job that I felt was never threatened by the fact I had T1 diabetes. I’m old enough to know that people discriminate and diabetes could factor into discrimination. That being said, I believe that most people will judge you as a package and they will weigh your positive qualities more heavily than you physical shortfalls. Some people may even see your aggressive positive management of T1 diabetes as evidence that you can overcome adversity, an important character trait in my opinion.

I would imagine you get some pretty crazy questions from people. Do any stand out as particularly out-of-the-ordinary? Do you ever get questions or comments that you find offensive?
Every once in a while, someone will ask where they can get a service dog vest like the one that Norm wears. What they want to do is get a vest and then bring their pet dog into places where pets are not permitted but service dogs are. These people make it hard for legitimate service dog teams like Norm and me with skeptical shop owners. I often meet these people in a store when their dog is barking at Norm.

I’m also offended by anyone that reaches out to pet Norm without first asking my permission. They think since he is a friendly looking dog that it’s OK. This can happen when my attention is focused, for instance, on a food label in a grocery store aisle or I’m otherwise temporarily distracted. Sometimes people just don’t think. Would they do that to a dog that was guiding a blind person? Don’t they know that Norm could be busy providing me a potentially life-saving service?

Most service dogs wear a patch saying “Do not pet” or “Ask to pet” (which some people mistakenly interpret to mean that they should ask the dog if they can pet it). What’s your policy – do you allow people to pet Norm? If you do allow petting how do you maintain Norm’s diligence with staying focused on you and not being distracted by desire for attention from others?
I usually let people pet Norm but I prefer that they ask first. I’m especially accommodating if children ask. It gives me a chance to further their education about service dogs. I always seek their parent’s permission before I let the children pet Norm.

I don’t like it when people just reach out and pet Norm without asking. I think that’s rude. What if Norm was working a low and I wanted him to stay with it? Sometimes I will pull Norm away from them and say, “Sorry, he’s working.”

What do you and Norm do for ongoing training?
I was taught during team training that the team could learn something every day. Every time I give Norm a bowl of food I make him respond to several obedience commands like “sit,” “stand,” and “wait.” It keeps his response to me tuned-up and crisp.

Once a year I return for a recertification. At this half-day group session the teams can review any changes or updates to service-dog public access rules and review some material covered in the initial team training. We also go out to a local shopping mall to verify that each team still exhibits competence in basic dog handling skills in a public setting.

During the seven-month period between team training and graduation, I had frequent telephone contact with D4D’s program director/trainer. This follow-up training laid the foundation for Norm and me to be a successful team. When this trainer left D4D to form Early Alert Canines in December 2010, I and several other clients joined her. For the last two years I have looked to EAC to provide the support Norm and I need.

Is there anywhere Norm *doesn’t* go? What do you do with him then?
Norm and I rarely part company. I did have an outpatient medical procedure performed and decided to leave him with my neighbors. One time I needed an MRI and I didn’t think the situation would be a good one for Norm or the hospital staff. When I mentioned that to the MRI operator, he said that they would have been delighted to look after Norm while I was getting the scan done.

I won’t take Norm to some foreign countries due to legal and cultural impediments. Some countries, like Mexico, do not have an established service dog culture. I would not hesitate to take Norm to Canada. I probably would leave Norm at home if I were traveling to Asia or Europe. I have taken him twice to Hawaii. Complying with all of Hawaii’s rules was like traveling to foreign country. They don’t have rabies in the islands so Norm had get various medical tests and exams so that he could enter Hawaii without quarantine.

I’ve been told to avoid going to zoos with a service dog as predator/prey behavior can develop. Many dogs do not like fireworks and we were warned not to take our service dogs to a fireworks display. I did go to one fireworks show and Norm seemed as calm as ever. I was prepared, however, to beat a hasty retreat if Norm didn’t like it.

Is there anything about living with a service dog that you wish you had known before you got Norm?
I can’t think of anything negative to say here. I was pleasantly surprised at how well Norm adapted to my lifestyle. When Norm first moved in with me, I was working swing shift, 3:00 p.m. to 11:30 p.m. I usually stayed up till 1:00 a.m. to 2:00 a.m. and then slept in till about 10:00 a.m. I was worried that Norm might try and wake me up early so he could relieve himself. Instead, Norm completely adapted to my schedule. He often does not leave his bed in the morning until I’ve finished my first cup of coffee.

Besides the obvious medical benefit that Norm provides, what other unexpected benefits do you enjoy from having him in your life?
I’m not a naturally out-going and gregarious person. I will talk with strangers I meet on the street but I don’t seek out such situations. Having Norm on the end of his leash puts me naturally into many casual conversations every day.

People want to know if I’m training Norm. They can see that I’m not blind so they’re curious what Norm does for me. I don’t take offense at this even though it means revealing private medical information.

I see these conversations as one of the ways I can give back. It allows me to engage people about diabetes and push back against society’s endless confusion about simple diabetes facts.

I’ve learned that many people love the idea that a dog can perform such a noble service for a human. People love dogs but they especially love service dogs. Conversations often include people saying something like, “You’re so lucky you have Norm!” And I agree with them. That thought resonates within me. I count my blessings and am reminded that even bad things like diabetes can have a silver lining!

Norm – do you have anything you’d like to add?
I never get all the food I want! I eat yummy New Zealand dried venison and my master weighs out each portion as if it were gold. I guess it’s good for me as I weigh in at a trim 55 pounds. And when I run, I’m as fast a jackrabbit! 

 

 

 

 

 

Terry – thanks again for your sincerity and enthusiasm. This really helped me and I’m sure will others as well.

 

 

Expecting

As a father of four, I’ve been witness through my wife to the phenomenon of an expectant mother and the  preparations she goes through as the delivery date marches ever closer. In many ways I find myself in a queer role reversal as I wait for Mya. I know this sounds overly sentimental but, much like a mother wonders what her unborn child is experiencing, I wonder what Mya’s life is like and how her experiences are shaping her personality. When I’m performing some mindless task such as picking up groceries or running an errand, I spare some brainpower to imagine what it would be like to have Mya with me right then.

I’ve also been reading a lot of books about dogs, these are some of my favorites:

Dog by Bruce Fogle

Almost everything you need to know about dogs – their history, breed differentiation, development, training, etc. Bruce Fogle keeps it fun and prevents information overload. Not really an emotional read for me but very informative.

 

 

 

Scent of the Missing by Susannah Charleson

This is a powerful story about a woman who volunteers on a search and rescue team and how she learns to trust her beautiful golden retriever. Let’s just say that the human grows through the experience as much as the dog, if not more! Couldn’t put this one down.

 

 

How Dogs Think by Stanley Coren

A fascinating study of how dogs perceive the world and what we understand about their thinking process. I look at dog behavior in a completely different way after reading this. A must read for every dog owner.

 

 

Through a Dogs Eyes by Jennifer Arnold
 

This is a story about dogs and their relationship with humans as told by a woman who trains service dogs. Jennifer Arnold’s writing is very accessible and her portrayal of the impact that her dogs have in lives of her clients is powerful and inspiring.

 

The Modern Dog by Stanley Coren

 

Very interesting exploration about how dogs evolved from wolves into the animals they are today and how their role with humanity has evolved into a symbiotic relationship. Very interesting!

 

 

Don’t Shoot the Dog by Karen Pryor

Karen Pryor revolutionized animal behavior training by popularizing clicker training. This is a must-read for anyone interested in positive-reinforcement training. I’m actually practicing clicker training with my cats (hopefully Mya will have a longer attention span than they do!)

 

 

I’ve been making other preparations to get myself ready for the life-altering change that Mya represents. She will need lots of regular exercise so I moved my wake-up time to 5:30 so I can get a head start on traffic and take a half-hour walk on one of several wooded or meadow trails along the route of my commute. I also added a daily half hour walk at lunch which has had major stress-reducing benefits. For now I still head home right after work and get on the bicycle for 30 minutes but I’ve mapped out several big fields on my route home where Mya and I will be able to get our heart rates up chasing balls and throwing Frisbees.

Over the past weekend, Mya started her long journey into my life. She was flown from her birthplace near Memphis, TN to Norfolk, VA where my trainer, Scott Smith, picked her up. She will live with him and his dog, Ava, for the next 3+ months while he trains her. Scott has been kind enough to satisfy my unquenchable thirst for pictures by sending me these great shots of my future buddy:

 

Mya at the Vet

 

Mya’s first day training

Meet my trainer, Scott Smith

As I mentioned in a previous post titled A Doggone Update, I chose Scott Smith to select and train a dog who will become my diabetic alert dog (DAD). He graciously agreed to be interviewed. Enjoy!

Scott Training Daisy & Laura at the mall

Please tell us about your background such as how you got started training dogs and how you came to train DADs.

I’ve been training dogs since I was a child. Mostly my own dogs and some for the public. I have always been fascinated with the dog’s nose and ability to process scent. This led to me doing quite a bit of tracking and scent detection work.  When I learned about DADs, I knew it would be a good fit for me.

What is your philosophy regarding the training of dogs, such as do you use entirely positive methods?

I try to only use positive methods. I would say the methods I use today are 99% positive. 

How long have you been training and placing DADs and about how many have you placed?

I’m probably three years into training Diabetic Alert Dogs. I’ve trained and placed around 20 dogs so far. I have helped many others train their own dogs with a video training series I developed.

Do you find that you place more DADs with adults or with children?

I’d say that it’s pretty even at this point.

Are there particular breeds that you prefer to work with and why? Do you believe that there any breeds people should avoid for scent/service work?

I prefer Labradors because I can find breeding programs that are striving to produce dogs with certain drives and developing the dogs ability to work scent. I try to stay away from breeds that are known to have the protective gene. 

How do you train dogs to respond to hypoglycemic and/or hyperglycemic scents? Where do you get your scent samples?

I use classical conditioning to teach the dog that the scent of low blood sugar equals a high value reward. Then I raise the criteria a bit so the dog learns that the scent of low blood sugar plus the dog giving me a certain behavior equals a high value reward. I generally do not work with high blood sugar until after the dog has been placed.

I have a condition called Reactive Hypoglycemia and have problems with low blood sugar. So, I make my own samples.

What kinds of signals do you like to train dogs to alert (bringsel, hand nudge, etc) and why choose one over another?
[Editors note: a bringsel is a stick or strap that the dog wears around his neck. When she needs to alert she puts it in her mouth and carries it to her handler as a signal.]

I like to use bringsels and nose bumps. I like to use bringsels for young children. The dogs looking after young children are usually working for the parents and there may be times when the dog and child are together and neither parent is present. If we use a bringsel the dog doesn’t have to make contact with someone who may not be familiar to the dog. Bringsels also afford us the opportunity to couple technology with the alerting behavior.

What kind of training do you do with a new DAD recipient? How long does it take in general for a dog and recipient to become a team?

We work a lot on obedience. Without a solid obedience foundation the new team is not likely to succeed. We also cover scent work, health and nutrition, public access, the law and many other topics. We take the dog on public outings to ensure the new handler gains experience with working the dog in new environments It’s a week of an incredible amount of information and many new experiences.

At the Started Dog level, I’d say the team has roughly 12 – 18 months of hard work ahead of them. But, I don’t want to be misleading…. The training never ends!

I imagine it must be a big transition for recipients – getting used to living with a service dog. What kinds of issues come up?

Yes, it is. Everything changes and at some point you realize it’s all connected. Something not quite right in one area affects all of the other areas. Every kind of issue comes up! There are family issues, other pets, neighbors, neighbors’ dogs, challenges at work or school etc.

What kinds of questions should people ask when interviewing a candidate trainer?

Dave, I think many of the questions that you’ve asked in this interview are great to start with. However, I wouldn’t rely on the trainers’ answers. I would want to talk with people who are clients of the trainer. Are they happy? Are their needs being met? Is the dog working to their satisfaction 12 – 18 months in? What do other reputable trainers say about the trainer and organization? I believe that trainers and organizations should be considered separately. A great trainer working for a not so great organization could be problematic.

There have been a few stories in the news about unscrupulous trainers taking advantage of people seeking a DAD. Are there red flags that people should look for?

There are…. I look at the number of dogs placed per year. I also look at the guarantees and statements that the company is making publicly in the media. I believe the only legitimate guarantees are for health and to replace the dog if it doesn’t work in a set period of time. Of course, the organization’s contract is important too. 

Basically, we don’t really know what these dogs are doing. If anyone tells you they know, that person is either lying to you or doesn’t have enough experience with Diabetic Alert Dogs to train your dog.

What is your position and reasoning on the pet/do-not-pet debate (should a handler allow the general public to pet their service dog)?

I’m definitely in the Do Not Pet Camp. My Diabetic Alert Dog should be focused on me and my blood sugar. Everything else is just a distraction. DAD’s who seek out the attention of others in public will wash out of my training program.

You offer a few different services for people who need help with training, from self-training videos to fully trained public-access qualified dogs. Tell us more about these.

Training Videos – I have a set of training videos that has helped many around the world to train their own dogs. It has also helped new organizations begin this work of helping others. The videos are being redone at the moment and are set for release at the end of Jan 2013.

Started Dogs – I spend most of my time training Started Dogs. These dogs have a firm grasp on Obedience, Scent Work and Public Access. They also have experience with House Manners. The dogs live with Ava, Arlett and me during their training and accompany Ava and I everywhere we go.

Fully Trained Dogs – I do very few Fully Trained Dogs. If you have a requirement for a Fully Trained Dog, please contact me directly.

What’s the most satisfying part of your work? 

Training the dogs and making a positive impact with passionate families and the relationships that have been formed because of this disease and the dogs that help us manage it.

What is the most frustrating?

People who think they don’t have to work at it. I spend most of my time trying to identify these people and weed them out.

Ava

I’ve read on your Facebook page a few colorful comments about your own dog, Ava. Tell us more about her.

Oh lord! About 5 or 6 years ago I started following a line of working Border Collies. A puppy became available from a breeding I really liked. She had been placed with a lady who had 2 small yappy dogs. They didn’t like Ava and she was back at the breeders real quick. I showed up at 10 weeks and had to really work to talk the breeder into selling me the dog. She wanted to keep her!

I brought her home and began training. She is without a doubt the most challenging dog I have encountered to date. I’ve tried to trade her, sell her and give her away. No takers! So, it has taken us 2 years, but we finally arrived. I have to say, she was the perfect dog for me. I had to grow some to make this happen. Dave, I hope Mya is the perfect dog for you! 😉

Thanks Scott!

 

You can contact Scott at his blog or Facebook page:
www.aservicedogtrainer.com
facebook.com/aservicedogtrainer

I, Robot

That’s me in the middle, dressed up for Halloween. Circa 1977

Sometimes I feel like a robot. Like when I insert the test strip, prick my finger, apply blood, wait (5…4…3…2…1…) then promptly remove the test strip without paying attention to what the meter says. I’m on autopilot, having repeated this ritual so many times that I almost forget why I’m doing it in the first place. Then I remember, “oh yeah, I’m diabetic”.

Sometimes I feel like a robot. Like when I prepare the same meal I eat every weekday for lunch and my lips move automatically as I silently count out exactly 16 crackers then add up the carbs in the orange, cottage cheese, and 5 chocolate almonds. My calculation always produces the exact same number yet I mindlessly count the carbs every time – I can’t help myself.

Sometimes I feel like a robot. Like when I slide the cgms out of my pocket and check my number every time I stand up to walk to a meeting or go to the bathroom. I secretly brush my fingers against it hundreds of times a day just to make sure it is there. It has become the touchstone of my disease.

Sometimes I feel like a robot. Like when I sit down to dinner with the family, everyone excited to tell the tales of their day, and I have to ask everyone to wait and not talk for a minute while I consult and caress my holy trinity of medical devices: glucometer, cgms, and insulin pump, ensuring they have given their blessing for the food I am about to eat.

 

I’m aware how bizarre these rituals are, how synthetic they make me feel. I recently took a forced 2 month vacation from cgms when my Dexcom transmitter gave up the ghost and I wanted to wait for the new G4 to come out. It felt liberating to have one less device to carry, one less numeric statistic over which to obsess. Undoubtedly my glycemic control was far worse with many more highs and lows, like trying to steer with my eyes closed. I’ll continue to use my cgms even after Mya arrives, but one of the things I look forward to with a diabetic alert dog is that she’ll be so much more organic than the other tools I use to manage this disease. She’ll be a tongue-lolling, desperately-excited-ball-chasing organic partner who eats dog food instead of batteries.

 

Fighting City Hall

One of my initial concerns as I started to consider getting a diabetic alert dog (hereafter DAD) was public access – specifically whether I would be able to bring her to work. At the time, I hadn’t read much about the legal aspects of this and I was still in the contemplation stage; gathering facts so I could make an informed decision. So I informally approached someone in HR and asked if there was a policy about this and how they would feel if I wanted to bring a service dog to work. I explained my medical condition including the serious risk that hypoglycemia unawareness poses and explained that the dog would be classified as a service dog which carries certain legal protections. I naively expected this to be no big deal and that my employer would have sympathy for my situation, recognize its obligations under the law, and approve my informal request.

After making my request I dug more deeply into my rights under the law. Under the Americans with Disabilities Act, employers are required to make reasonable accommodations for disabled employees unless they pose an undue burden or significantly interferes with the operation of the business or the employee’s work. My interpretation of the law led me to conclude that my request was perfectly reasonable, did not pose an undue burden, and in would no way interfere with the business of the company or my work. I was asking for the right to have a dog sit on the floor next to me at my desk all day – how could this possibly be a problem? Regarding the question of whether diabetes is considerer a disability, I found this tidbit on the AskJan.org website which interprets disability law for employers:

“Is diabetes a disability under the ADA? …according to the Equal Employment Opportunity Commission (EEOC), the individualized assessment of virtually all people with diabetes will result in a determination of disability under the ADA; given its inherent nature, diabetes will almost always be found to substantially limit the major life activity of endocrine function”

I was quite surprised when – several weeks later – I was told that my request had been denied. I asked why and the HR director squirmed a bit and tried to avoid giving me a substantial reason. I kept pushing until she said that they didn’t feel it was medically necessary. There were a lot of responses ricocheting around my head but I kept my cool and said with only the slightest bit of snark, “I don’t think the employer gets to make that determination.” I went on to express my deep dissatisfaction with their decision and said that I wanted to speak directly to the corporate legal team who, I was told, had come to this decision.

For legal reasons, I won’t go into detail about what transpired next. In a followup meeting I was told in very certain terms that my request was denied and the issue closed. The way this information was presented left me feeling very intimidated and frustrated which, in my humble opinion, was their intent. I seriously considered finding a new job.

Over the following weeks I spoke to everyone who would listen to my story to try to get a sense of what I was up against. The list included the Equal Employment Opportunity Commission (EEOC), American Diabetes Association (ADA), Massachusetts Commission Against Discrimination (MCAD), and a generous family member who is an attorney.

In each case I was told I had a legitimate complaint and that I should respond to their reason of lack of medical necessity by a formal request with a letter from my doctor detailing my condition, the risk it poses, and the medical benefit that a DAD would provide. If the new request is again denied then I should file a formal complaint with MCAD whose lawyers will investigate and pursue resolution.

And that’s where it stands today. I recently mailed my request with supporting documentation from my doctor and a Lily study testifying to the efficacy of DADs. So now I wait.

My emotions during this process have been all over the board, often changing moment to moment and day to day; a condition I expect will continue for the foreseeable future. These are the overtones:

  • Frightened – there is definitely a risk my employer could retaliate and fire me outright. I’d recover but in this economy it could be very unpleasant. Retaliation is illegal and I could sue for back pay plus punitive damages but that can take years to litigate and untold amounts of stress.
  • Intimidated – I don’t like confrontation and tend to avoid it whenever possible. I just want this situation to go away.
  • Bold – I’m not going to be bullied. I will stand up for the right to manage my health and improve my chances of a long diabetes-complication-free life the way I see fit. Standing up for my rights may also aid the next person who needs to request accommodation for their disability.
  • Angry – it infuriates me that I have to waste my time and energy dealing with this when I have much more deserving beneficiaries.

Put all this into a pot and stir and you’ve got yourself a nice recipe for Stress Stew. And we all know what stress does to glycemic control right?

With luck this will be resolved, one way or another, before Mya has completed training. Stay tuned for updates.