A Service Call to Dog Lovers With MS
There was a reason why I named him Bean.
In the award-winning book Ender’s Game, there was a character named Bean. This character was genetically modified to be incredibly smart, but he was also smaller than the usual human and his lifespan was shorter. Thirteen years ago, when I got my first dog in my adult life, my only concern was that I would fall in love with a living being that would likely not live as long as I would. Bean seemed an appropriate name for this supersmart mini Australian shepherd-poodle mix (Aussie-doodle), and the name would remind me to cherish every moment with him.
My service dog and family member
Two years after Bean became my family, I had my first identifiable MS attack. It was my first summer back East (I’d lived in Southern California for the prior 8 years), and when the heat and humidity of the East coast summer hit in June, double vision and occasional blindness sent me to the ER. Looking back later, I realized that Bean had known at least a month before, that I was sick.
He had changed his sleeping position (he began sleeping on the floor under my bed rather than in his comfy bed), he started to accompany me everywhere (bathroom, kitchen, etc.), he began leading me home earlier and earlier when we went on walks, he checked intersections and stopped me when necessary, and he put himself between me and unknown people when — I later realized — I had been having difficulty walking.
Our global adventures
I needed full-time care, and a diagnosis, after that MS attack, so Bean and I went to my parents’ farm for 2 years - Bean’s 3rd move with me. When I was ready to work again, Bean took care of me as my service dog (both US and internationally certified) while I worked at a research lab in Germany. And, most recently, we made our best-ever move: to Italy. To a sun-soaked small city with a great MS Center and research lab in a 10-minute radius from a community and condominium selected entirely by my little fluffy dude.
And, the morning after the last box was unpacked, Bean suffered a heart attack and died in my arms. He had been on heart medication and an edema medication for three years, but he still had his Bean energy and appetite for food and life and (human) friends.
"I could have missed the pain, but I would have missed the dance." -Garth Brooks, Tony Arata
The many things he did for me
In the eight weeks since I have been without my Bean, I have come to realize the many, many ways in which he helped me perform tasks of daily living and enabled me to live with physical, sensory (e.g., visual, hearing) and cognitive (e.g., memory) disabilities. Without Bean, I have gotten lost (on a known route) returning home several times and, because of MS fatigue, I could not understand the map on my phone or think to call a taxi. I have crossed the road into oncoming traffic, stumbled every day at the same place in the sidewalk, twisted both ankles, fallen a few times, and nearly walked into the tailgate of a parked pick-up truck (at eye-level).
I had known that Bean had been taking me home (or to a specified location where I could lie down) approximately 30 minutes before “MS fatigue” would set in and I would have increased problems walking and remembering, but I had not realized how naturally and seamlessly he had been performing his work.
He stepped up when I really needed him
One especially memorable example of Bean’s ability to know when and how to take me to our current “safe location” was when I (we) attended a professional conference at the Sorbonne. After checking into an Airbnb in Paris, I went to pick up food. The search for gluten-free food made me so tired that I had no idea where I was. I had not brought the Airbnb address or my phone with me and had no memory of where I had walked and no idea how to get anywhere. Moving in front of me (rather than beside me), Bean took over, stopping me at each intersection and leading me around tripping hazards. When he stopped walking and looked up at me, we were at the incredibly obscure entry to our Airbnb on a small winding street.
The rights of a certified service dog
As an internationally certified service dog, Bean could travel in the airplane cabin at my feet, attend academic conferences with me, and accompany me to the grocery store and all other public places required for the maintenance of my daily living and working. I am still grief-stricken with loss, but considering my recent falls, I know that Bean is already leading me to my next service dog. This dog will need to accompany me everywhere, as Bean did.
In a recent episode of Real Talk MS, host Jon Strum interviews a lawyer with MS whose service dog has also enabled him to continue to do his work by mitigating the effects of his physical disabilities. The lawyer, Trevor Hardy, explains the important legal distinction between his mobility service dog and an emotional support dog. According to the laws of most countries, the owner of an officially certified service dog has the right to be accompanied by their dog in public places. These same legal rights do not extend to owners of an emotional support dog. Investigating the current options for assistance dog training, I have realized why people with MS have very limited access to a certified service dog.
Nobody knows...What is an MS service dog?
When entering a public place with a service dog, the owner can legally be asked two questions: 1. Is your dog a certified service animal? 2. What service/task has the dog been trained to perform? When answering the second question, by default, the disability of the owner is often made clear. For example, in the case of guide dogs, hearing dogs, seizure alert dogs, and mobility dogs, the person’s disability can be clearly defined and selection of the dog and its training can be reliably standardized.
Moving outside of these narrow parameters of “disability” — which is where most of us with MS live — opens a whole new can of worms for assistance dog programs, trainers, and certification associations. I have currently been unable to find any accredited service dog training programs that train dogs specifically for persons with MS. I was, however, informed that I could submit an application to receive a trained mobility dog. But, as I learned from Bean, the right service dog can help to mitigate the impact of so many of my disabilities, not just those related to mobility.
"As you grow older, you will discover that you have two hands, one for helping yourself, and one for helping others." -Audrey Hepburn
Help inform assistance dog training programs
In honor of my cherished years and moments with Bean, it is my goal to inform assistance dog training programs about what Bean taught me. I encourage you to share how your dog helps to mitigate the effects of your disabilities. Or, ideas about how a dog could be trained to assist you in living with your MS.
In late October, I will combine all of our comments into a comprehensive list for distribution to service dog training and certification programs. I will also post the final list here, so that you can present it to your service dog trainer. Viva Bean!
Please unleash your experiences and thoughts!
Do you ever experience sciatica (pain that travels along the path of the sciatic nerve meaning the lower back, buttocks, hips, and legs)?