diabetes alert dogs | Test Guess and Go

Elle & Coach by Stefany Shaheen is the story of Shaheen’s oldest daughter Elle (pronounced “Ellie”) who was diagnosed with Type 1 diabetes at the age of 8. This book was recently published in August and I am pleased to have been given a complimentary copy along with the opportunity to share my views of the book. As always, the opinions expressed are my own.

Both the front and back covers of Elle & Coach show a lovely young women along with a handsome yellow labrador retriever. The title of the book mentions “Coach” and the subtitle is “Diabetes, the Fight for My Daughter’s Life, and the Dog Who Changed Everything.” So why doesn’t THE DOG make an appearance until halfway through the book?!?!

The answer to that question is why Elle & Coach is an educational, and inspiring book. For those of us in the diabetes community, the story of Elle’s Type 1 diagnosis is a familiar one with injections, fingersticks, hospital/doctor visits, and wild swings in blood sugar. We have lived with the unrelenting fear, stress, and blame. Through the early chapters of the book Shaheen does a good job of describing the physical and emotional impact of a Type 1 diabetes diagnosis on a child, the parents, and the entire family. We know the story.

If you have difficulty explaining to your relatives and friends the impact of diabetes on your life and that of your family, hand them this book. The story (and of course the beautiful dog!) is compelling enough to keep outsiders reading. They will learn the basics of Type 1 diabetes, the unending daily tasks required, the longterm impact of the disease, the role of technology, the eternal hope for a cure, and the importance of advocacy at both a local and national level. Admittedly a Type-A mother, Shaheen is not a whiner and she has spent the last eight years working to help people and families impacted by diabetes and other chronic conditions. Similarly, Elle has been a diabetes advocate from a young age and has shared her story with people from community leaders to the President of the United States.

Now enter THE DOG! Elle and Shaheen learned about Diabetic Alert Dogs (DAD’s) at the 2011 JDRF Children’s Congress where they were witnesses to a young girl and her DAD in action. Initially Elle was not interested in a companion dog, but her mother was inspired to begin researching the use of medic-alert dogs with diabetes. The rest is history as Coach and Elle became a team in the spring of 2013.

The second half of the book describes the magical ability of certain dogs to sense blood sugar changes in humans and the journey of the Shaheen family to obtain a diabetic alert dog for Elle. The beginning of Elle and Coach’s partnership is fascinating and heart-warming. Right away Coach alerted properly to Elle’s out-of-range blood sugars and very quickly began easing the burden of diabetes on the entire family. There were a few bumps in the road and these occurred because although the dog was superbly trained, his humans had a lot of learn!

If you are interested in a diabetic alert dog, Elle & Coach is a good starting point to learn about how to obtain a DAD and some of the adjustments required to fit such a dog into your world. Shaheen wisely emphasizes the need to do your homework to determine if an alert dog is appropriate for you and the responsibilities of living with such a dog. Expense, public access issues, the need for ongoing training, and the 24/7/365 nature of the handler/dog relationship are some of the topics addressed.

I wore many hats as I read this book. I have Type 1 diabetes and know the intimate details of living with this challenging condition. I am a mother and grandmother who gives daily thanks that none of my children and grandchildren have been diagnosed with diabetes. Elle & Coach reinforces my belief that most of the time it is easier being the person with diabetes as opposed to the parents and people who love us:-) I am a dog-lover and the owner of Abby the Black Lab who at age 9 does not react to my blood sugars but might have been trainable at a younger age. In summary, all of my D-roles enjoyed this book and think that you should find a spot in your diabetes library for this story.

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Elle & Coach is available in hardcover, e-book, and audiobook and is available at major booksellers. Click here for more details.

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If you’d like to follow Elle and Coach online:

www.elleandcoach.com | @elleandcoach | www.facebook.com/ElleandCoach

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If you’d like to read more blogposts about diabetes alert dogs, check out:

https://testguessandgo.com/2014/07/10/ann-wallen/

http://blackdogsrule.com

http://tarraandduchess.blogspot.com

I was introduced to Ann Wallen for the first time in 2012 at a diabetes meet-up in the Minneapolis area. We talked a bit that evening and several more times at other Twin Cities social gatherings. Ann’s plus-one is a white standard poodle named Lily who is a Diabetes Alert Dog (DAD). Asking a few questions, I found out that in addition to using a DAD, Ann is a trainer and consultant for other diabetics looking to add a DAD to their diabetes arsenal. When I saw Ann this spring, I asked if she would be willing to let me interview her for my blog. She readily agreed and in May we met for lunch followed by a walk around Minneapolis-landmark Lake Harriet.

I am fascinated by the fact that certain gifted and well-trained dogs are able to reliably alert people with diabetes to highs and lows. Although I am for the most part hypo-unaware and am an avid dog-lover, I don’t believe that I have the need for a DAD nor do I want the work and responsibility of one. My Dexcom G4 Platinum CGMS is incredibly effective in protecting me from severe and debilitating lows. I test enough that I don’t need a dog to tell me that my BG is soaring high and out of range. (More on that later.) Abby the Black Lab is 8-years old and well past the age that it would make sense to train her. Believe me, Abby has never shown the least interest in my blood sugar anyway. But as I said before, I’m fascinated by DAD’s and regularly read My Crazy Life With My Diabetic Service Dog, Tarra’s blog about Duchess, and Black Dogs Rule about the two black labs who keep Stella safe.

Ann’s Story: Ann was diagnosed with Type 1 diabetes twenty-six years ago in 1988, a few years after a difficult pregnancy and a 10+ pound baby. She walked into her doctor’s office with the self-diagnosis of Type 1 diabetes. He laughed at her and then reconsidered his hasty opinion after seeing a BG of 650+. In typical Ann-fashion, she refused to go to the hospital and some kind soul at the International Diabetes Center stayed late that evening to teach her how to inject insulin.

Years later Ann gradually began losing the warning signals of low blood sugar and by 2004, she was totally hypo-unaware. Rapid and undetected drops in blood sugar Ann and Lily increasingly left her incapacitated and afraid to leave home. Like many people who used insulin in the days of animal-based insulins, Ann wonders if pumping with the modern “-log” insulins that lack c-peptide is responsible for her severe hypo-unawareness.

There are few diabetes stories where Scott Johnson doesn’t end up in the footnotes and Ann Wallen’s story is no exception. Many years ago Ann read a blogpost by Scott describing the new life gifted to his friend Molly as a result of the daily miracles performed by her diabetes alert dog Dixie. Inspired and excited, Ann contacted Molly to learn more about how dogs could enrich and save the lives of people with Type 1 diabetes. Thus began Ann’s journey into what was then the very small world of diabetes alert dogs.

The organization through which Dixie had been trained was no longer involved with diabetes and Ann came up empty-handed in her search for help in obtaining an alert dog. Let me re-phrase this. Ann came up empty-handed in her search for help in training her own dog to be an alert dog. In 2009 Ann went to see a trainer in Texas and spent six weeks working with scent samples to teach Lily to recognize out-of-range low and high blood sugars. Ann indicates that this woman was a very gifted trainer, but when she and Lily returned to Minnesota, Lily had not yet started to alert. One month later while on a trip to Fleet Farm, Lily successfully pawed Ann to a low BG of 62 and has been alerting to highs and lows ever since. (Only those who live in the heart of the Midwest will appreciate the cachet that the mention of Fleet Farm adds to any story.)

Ann and her business partner Diane have dedicated themselves to training alert dogs in their Scent Angels partnership. The two women have been friends for over 30 years and initially crossed paths through their involvement in horse training. Diane is the principal trainer and trains one dog at a time in her home. She has successfully placed nine DAD’s since 2009. Ann heads the owner training program and consults with people who want to train their own dog to alert. I encourage you to check out the Scent Angels website to learn more about these incredible women and the even more incredible dogs that they have trained. Ann and Diane work hard to be flexible and to evaluate the needs of each individual client. At the same time both women believe that diabetic alert dogs are not the solution for every person with diabetes. You can find contact information for both Diane and Ann on the Scent Angels website.

Who should get a DAD?: Voicing strong opinions on this subject, Ann said that diabetic alert dogs should be provided to people who need them, not just those who want them. Each potential client needs to have tried using a continuous glucose monitor (CGM) and found that it either doesn’t work for them or provides inadequate protection. Some good candidates are like Ann with blood glucose that crashes too quickly for a CGM to track. Because only about 30% of these dogs alert at night, a DAD is not a reliable solution to nighttime hypoglycemia. The client must have a job or life situation that allows the dog to be with him/her at all times. Ann believes that children are not good candidates for alert dogs and Scent Angels will not work with children.

What is the hardest part of using a DAD?: Ann indicated that dealing with the public is often her biggest headache. She is very open to discussing her dog with others, but does not want others to pet or distract Lily without permission. Ann is extremely knowledgeable about federal law and Minnesota statues regarding service dogs. She is rarely questioned about her right to bring Lily into any establishment in Minnesota. She always carries documentation to support her rights for the rare times that she is challenged and she always researches the service dog statutes for any state that she visits.

What is the best part of having a DAD?: Without hesitation Ann replied “The return of my independence.”

Interesting, but not necessarily related thoughts on diabetes alert dogs:

Some dogs alert to only their owners, but Lily has alerted to others such as Scott Johnson. I normally eat a lowish-carb diet, but splurged with a sandwich and an unfamiliar salad for my lunch with Ann. Interestingly (yes, we might be long-lost twins!), Ann and I ordered the same meal and independently bolused approximately the same amount. The only difference is that because we were planning to walk after lunch, I programmed part of my insulin as an extended bolus. Halfway through lunch, Lily began pawing Ann with an alert. Ann tested and was well in range at 112. My Dexcom G4 vibrated and displayed a reading of 187 with double arrows up. (I had been in the 90’s before eating.) Obviously Lily was alerting for my high blood sugar. Incredible.
Ann has a second dog named Stella who was evaluated and considered too distractible (ditzy!) to be trained as an alert dog.
When I mentioned to Ann that Abby the Black Lab has never shown any change in behavior as a result of my BG levels, Ann indicated that doesn’t mean that she wouldn’t have been a good candidate for training as a DAD. According to the Scent Angels website: “The biggest differences between a service dog and a pet dog isn’t capability, but stability, reliability and training.”
As an owner of labrador retrievers, I have always considered poodles to be foo-foo dogs who prance around The Westminster Dog Show with silly haircuts. Obviously I couldn’t be more wrong. Lily is a standard poodle and of the nine dogs that Diane has trained, three are standard poodles and three are labradoodles (lab/poodle mixes). Researching dog intelligence online, I found that according to Stanley Coren’s book, The Intelligence of Dogs, poodles are ranked #2 in intelligence among dog breeds and labs are #7. Ooops. Sorry for the ill-informed diss, Lily….
There are some people with diabetes who use both an alert dog and a continuous glucose monitoring system. Tarra of My Crazy Life With My Diabetic Service Dog uses both, but does not have much confidence in the CGM. Ann has never had a good experience with a CGM, but I encouraged her to trial the Dexcom G4 Platinum if she ever gets the chance.
There is no required certification or license required for a service dog. Anyone can order a service vest online and either legitimately or under pretense have a dog accompany him/her into public venues. There are federal laws that govern the behavior of service animals such as the guidance that a service dog can’t sit in your lap or be on public seating. For those people who legitimately require a service animal, it is frustrating to see others abuse the system.

Conclusion: Thank-you, Ann, for giving me the chance to tell your story. Spending time with you, it is easy to see how much Lily enriches your life. Through your work with Scent Angels, you are an inspiration to and an invaluable resource for other people with diabetes. I look forward to spending more time with you in the future both on dog walks and at local diabetes meet-ups.

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