CSRF member and Cushing’s survivor Amy Dahm, accompanied by her service dog, Sam, co-facilitated an informal discussion with renowned dog trainer Bill Creasy about service dogs for Cushing’s and patients with adrenal insufficiency (AI) as a side meeting to the National Cushing’s Patient Education Day in Bethesda, MD on Friday, October 20, 2017.  Bill Creasy has over 40 years’ experience training dogs and is the current Chair of the International Association of Canine Professionals (IACP) Service Dog Committee.  The goals of the presentation were to inform the audience, examine the current landscape for Cushing’s and AI service dogs, and to eventually create a replicable, reliable protocol for training adrenal insufficiency dogs.

Ms. Dahm defined an adrenal insufficiency dog and presented an overview of the Americans with Disabilities Act (ADA) and legal protections for service dogs and their owners. She defined an Adrenal Insufficiency Dog (AID) as a dog trained to perform specific tasks which can detect changes in cortisol in the body and alert a patient when the patient is heading into medical crisis.  Under the ADA, a service animal is defined as a dog that has been individually trained to do work or perform tasks for an individual with a disability.  Service providers are only allowed to ask two questions:  1) Does the owner have a disability?, and 2) Does the dog assist the owner with that disability? The tasks performed must relate to the disability.   She compared service vs. therapy vs. emotional support dogs, and noted that the category of service animals is the only category that has legal protection under the ADA, although some airlines and housing boards do recognize emotional support animals (ESAs).   State law also comes into play.  For example, for service dogs in training, trainers must follow state law, not the ADA.

Although the interest is keen throughout the Cushing’s and AI communities, at this point, efforts have been one-off and it is difficult to obtain a reliably trained AID.  Traditionally, there are three ways to obtain a service dog:  1) from a professional trainer and/or specialty organization, 2) to train one yourself, or 3) to have the dog alert naturally.  Although there is an online group dedicated to training service dogs for “Cushies” (Cushing’s patients), at this point in time, there is no recognized, replicable training protocol for adrenal insufficiency dogs in the United States.  There are at least a few vetted AI service dogs in Europe.  According to experienced Diabetic Alert Dog (DAD) trainer Becky Causey, the standard she recommends for training is that the trainer has trained a service dog focusing on that specific disability that has successfully alerted over the course of one year.  Mounting interest from the Cushing’s and AI communities, coupled by a burgeoning awareness by experienced dog trainers, is leading to a new push for developing a reliable source of trained medical alert dogs.

Benefits of AIDs

The potential benefits of developing a reliable, large pool of AIDs are many. Medical alert dogs serve as an additional disease management tool for those patients dealing with the day-to-day management of a very tricky disease where there are very few tools available.  Until extremely recently, there was no way for patients to check their cortisol levels on an immediate basis – and the accuracy and authenticity of the iphone meter is still unknown long-term and it is expensive and not commonly available.  A reliable medical alert dog can provide an alert to a patient when heading into crisis, buying the patient more time to take more steroids, self-inject, or head to the ER for treatment.  If a patient loses consciousness during crisis, a service dog can alert bystanders. A trained dog can fetch extra steroids if the owner becomes incapacitated, and has the extra benefit of making an “invisible” disability more visible, accepted, and accessible.

Renowned trainer Bill Creasy has been studying the mechanics of Cushing’s and adrenal insufficiency and is planning on applying his refined training and scentwork methods to an attempt to train a new AI dog starting in Spring 2018.  He estimates that, if successful, it will take 18 months to train the puppy to be a fully functional, public access AI service dog.  He hopes to use this dog as a template for proof-of-concept and for developing a replicable protocol for training other AI dogs. 

Challenges-

There are several challenges facing efforts to develop a replicable, reliable protocol. Cortisol is not easily measured, and every “Addie” (patient with Addison’s) has a different cortisol “cliff” at which point they begin to nosedive into an adrenal crisis.  This is cutting edge science. It’s not clear that all Addies emit a “scent” when going into crisis.

The Service Dog Industry-

Per renowned trainer Becky Causey, a potential service dog owner should practice “buyer beware.”  The service dog industry is not regulated, is highly fragmented, and there is no one standard. A trained service dog, for example a diabetic alert dog, can cost anywhere from $15,000 on the low end to $25,000-30,000 on the high end, depending on the skill level and seniority of the trainer.  Many illnesses have organizations dedicated to funding and helping train service dogs geared towards the needs of patients with those particular illnesses; Cushies and Addies do not.  

Vetting a Service Dog Trainer

Per Becky Causey, these are the questions you want to pose before spending thousands of dollars and hundreds of training hours on a service dog charged with assisting in life-threatening situations:

– How many Addison’s or Cushing’s dogs have you successfully trained? And how long have they successfully been working with their owners?

– What is the motivation for training a dog with this skill?  Personal first-hand knowledge of disease, personal interest, or paycheck?

– Does the trainer understand the mechanics of the disease?

– Is the trainer training towards the dog providing helpful tasks or preventing a life-threatening emergency?

Amy and Sam’s Story

After developing post-operative adrenal insufficiency after my ULA in 2014, my beloved dog, Sam, spontaneously alerted one me one night when I was home alone on the couch with a raging cortisol headache.  Sam is a Cyprus poodle, and he was a hunter with a strong sense of smell.  I didn’t feel well, and he alerted – he issued a piercing shriek, he jumped on the couch, and he started pawing at my hair and nudging me.  I took steroids, and he calmed down.  Puzzled, I lay back down and rested.  The next day, after googling and finding a story for an Addison’s dog in the UK and realizing that he might have been alerting on me, I wanted to learn more about service dogs and make Sam legit.  I lived in mortal fear of having an adrenal crisis, lived by myself, and had problems with my balance and frequently dropped things. 

Despite my best efforts, including researching online, consulting my vet, and asking the online groups, I hit a brick wall.  I couldn’t tell what my local service dog laws were, where I could get Sam properly trained, or what the standards were.  One night I was home watching TV and a news segment came on about a renowned service dog trainer.  I called her the next day and attended a service dog workshop geared towards service dog owners an hour outside DC.  At this workshop, she tested Sam and other dogs, educated us on the basic tenets of the ADA, and introduced me to other trainers, including Becky Causey.  The final day of the workshop the dogs rode public transportation and did a check-out in a nearby town, and Sam passed with flying colors. Both Sam and I were exhausted, and would take two hour naps when we got back to the hotel.  By the end, he would not even look at me – his journey from a pampered pet to a full-on service dog was not an easy one for him.

Over the next few months, my boyfriend and I would take Sam and practice what we had been trained to do.  We slowly exposed him to an increasing amount of stimuli in varying controlled environments, and gave him attention when he behaved well (and cut off attention when he didn’t).  He hated the service vest, and chafed at wearing it.  Sam, who was very social, was upset that his meet and greets were sharply curtailed. We visited restaurants, attended lectures, and took him to other people’s houses in an effort to expose him to additional stimuli.  I sought out empty daytime movie theaters to see how he would react to the big screen.

The question remained whether his initial alert was a fluke or if he could repeat it.  Eventually, we received the answer when he alerted on me again.  Although I didn’t feel in crisis, per se, I headed to the ER, where the doctors discovered I had a serious infection that was impacting my cortisol.

My boyfriend and I took Sam to our first meeting of the DC Chapter of the CSRF Support Group in 2015 and he became the unofficial mascot.  Although many people recognized he was a social and polite dog, many people were suspicious because he was not the standard issue Labrador service dog.  I became tired of explaining over and over again how he was a service dog and educating various business owners about what they could legally ask us.  To be sure I was operating within the law, I checked in with the service dog coordinator for DC, who assured us we were.  Over time, Sam and I fused as a unit. We became more comfortable walking in stride together, obeying commands, and working as a team.   

Sam and I went together to Capitol Hill for Rare Disease Week. While preparing to medically retire, Sam accompanied me to my seminars at the Foreign Service Institute, where U.S. diplomats go for training.  

Sam continues to support me, and we hope to use our relationship as a framework for developing a protocol for medical dogs for Cushing’s and AI patients.

by Amy Dahm

Winter/Spring, 2018