I Became What Didn’t Exist for Myself

Written by Sally Fowler for the RSDSA blog.

I’ve been living with CRPS for 10+ years. Mine started after a horseback ride severely twisted my right arm behind my back, causing nerve damage. It took about four years to spread to full body pain, muscle spasms, tremors, brain fog, partial paralysis, loss of limb awareness, loss of balance, thermoregulation problems, and more. It took five years to be diagnosed; by then, several doctors told me there was nothing they could do for me. 

I’d planned to be a horse trainer & professional horse photographer, and went to college 843 miles from home to pursue that career. I sustained my initial injury my freshman year, two months into the first semester. I had three friends, no nearby family, and no primary doctor. I didn’t know it at the time, but that ride disabled me. Mid-way through college, I discovered a natural talent for baseball photography, and I switched my career focus to it, because I couldn’t ride anymore. By senior year, I could barely hold my camera for 30 minutes without severe pain and tremors in both arms. Riding and driving triggered hours-long neck paralysis. I didn’t get early treatment when I needed it most, because while I saw a doctor within the first year, and he did mention RSD, he was convinced I couldn’t have it because it was rare. His mistake, plus my lack of knowledge and resources meant by the time we got the diagnosis, I was already disabled, and beyond the point of traditional medical assistance. 

After college, my life was ruled by CRPS. Nowhere and nothing was without pain. I was worried and cautious. I wasn’t active. My quality of life was terrible. I felt trapped, angry, and hopeless. My boyfriend encouraged me to try photography again as a hobby. I dismissed it, reminding him of all my new limitations. He joked that all we needed to do was get me a service llama (not a real thing) that I could ride, strap the camera to its neck, and work that way. It was probably the brightest, funniest spot of my day. It sparked an idea we hadn’t considered yet – what about a service dog?

The first time I felt safe with CRPS was six years after my initial injury. 

I fell while playing outside with Robbie, my service dog, and blacked out for a few seconds. When I came to, he was pushing his nose against my face, licking me, and standing over me. My hands were burning with the pain from hitting the ground, my whole body was shaking, and I felt incredibly weak. As he had been trained, Robbie pushed his head under my arm, pushing me off the ground and onto his shoulders. From there, I pressed one hand against his chest, one hand on his shoulders, and brought myself to a stand while he assisted, standing as still as stone. Walking ever so slowly, my hand on his shoulders, Robbie led me back inside the house, helped me change into comfy clothes, and into bed, then laid nearby. What once would’ve taken 20 minutes to get to safety, Robbie did in five minutes. 

Robbie was the beginning of changing impossible to possible. There weren’t CRPS service dog trainers available to help me train him. I took my experience training horses, reapplied the knowledge to training Robbie, then developed my skills and education as a dog trainer. Today, I own a dog training business. Disabled Advantage is dedicated to helping others with CRPS train their own service dog in the U.S., and coaching people with CRPS anywhere in the world. I became what didn’t exist for myself. I’d like to share a bit about CRPS Service Dogs, and give you access to reliable information.  

What is a CRPS Service Dog?

It is a type of service dog who helps someone disabled by CRPS. Not everyone living with CRPS needs or wants a service dog’s assistance. A service dog has the potential to be as variable in its work as the CRPS is, making their assistance transformative where other approaches have failed.

What Tasks Might a CRPS Service Dog Do/How Do They Help?

Typically, service dogs do tasks (activities) that are impossible for their handler to do. CRPS service dogs provide a broader range of assistance, performing tasks which are difficult, impossible, and those known to trigger pain. The service dog doing the activity prevents the handler from developing the flare they would’ve incurred by doing it themselves, thus keeping day-to-day pain levels more stable and manageable. They work to prevent flares, assist during flares and day-to-day life functions, and help us recover after a flare, thereby increasing a person’s functionality and independence. Though not a cure, CRPS service dogs are a game changer. 

In my experience working with and talking to CRPS teams, most people need a light or heavy mobility dog, primarily assisting with mobility-based tasks, given the far-reaching impacts CRPS has on our bodies. The dogs are often cross-trained in psychiatric tasks to help with anxiety, depression, brain fog, & tasks specific to CRPS and compounding disabilities. Tasks may include:

  • Opening/closing doors
  • Assistance rising from a chair, bed, or the floor
  • Stabilization for walking, getting dressed, in/out of the tub, rising from a chair, dizzy, etc.
  • Bringing specific items or people
  • Providing deep pressure for pain/anxiety/tremors or body warmth to stabilize temperature
  • Remind to take meds, to move around, etc.
  • Moving heavy objects
  • Assisting with repetitive motion chores, such as laundry
  • Carrying flare kit in a pack
  • Guiding handler to a person or place when disoriented or post-fall

How Might I Partner with a CRPS Service Dog?

  • U.S. federal law allows people to train a service dog themselves, with a trainer’s help, or by applying for a pre-trained dog from a program or charity. Currently, there aren’t programs specifically for CRPS Service Dogs, and very few trainers know of the syndrome or what considerations go into training a dog to work with a CRPS disability. Programs typically advertise based on need, such as mobility or psychiatric, not specific conditions. Many programs don’t offer brace or balance tasks. 
  • In other countries, you must go through an organization or work with a trainer. Check ADI to find assistance. 

What Should I Consider If Training My Own?

All service dogs need to be well-built, have no health issues, the right size for the task assistance needed, and the right temperament. Before looking for a dog, you need to know what tasks you need.

  • Size – The more intense the task, the bigger the dog. Mobility dogs need size on their side to help with stabilization, opening doors, and moving objects. Any service dog must be well-balanced, well-built, and not disabled themselves. 
  • Temperament – Confident, friendly, willing to work, medium energy, focused on you, 
  • Coat – Being able to tolerate the feeling of their fur & fulfill grooming care needs is vital
  • Barking – If you have centralized CRPS, barking can trigger vertigo, passing out, and dizziness. 
  • Finances – No service dog is free or cheap. Owner-training can be $1,000/year for upkeep alone of health, toys, food, grooming, if not more. Service dog training is specialized for a reason. Your local pet shop will not be able to provide the level of training a service dog needs. 
  • Exercise – Doing their job isn’t enough. I rely on a variety of outlets, including fetch, puzzle games, walks, a treadmill, and agility.  

Can I Just Get My Dog Certified/Registered?

In the U.S., certification and registration are not required by federal law. Select areas have voluntary registries, but doing it doesn’t turn your dog into a service dog. Websites offering certification and a vest are scams. A vest and a piece of paper don’t make a service dog. Intense training over 1-2 years in obedience, socialization, public access etiquette, and task training builds a service dog, along with the dog having the right temperament and suitability for the job. 

Where Can I Find Reliable Information and/or Help?

  • Assistance Dogs International – Learn about service dogs, find a program or trainer accredited by ADI through their “member search”, best resource for international
  • Ellas Animals Inc. – a nonprofit who helps people owner-train service dogs in the U.S.

Connect with Sally via her website, Disabled Advantage Dog Training & Consulting, LLC, on Facebook via her page titled Disabled Advantage Dog Training & Consulting, LLC, Instagram via @disabledadvantage and on Patreon via disabledadvantage.

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