Service Dogs Can Change Lives for Those with Dystonia
Maddie Paolero and Dee Linde share how their dogs, JJ and Murphy, bring independence and companionship to their lives. Learn if a service dog may be right for you and what it takes to find and care for one.
At age 5, Maddie Paolero was diagnosed with early-onset
generalized dystonia. “I started noticing when she was 2 or 3
years old that she was tiptoeing a lot,” said her mother, Beth Paolero. “When her tiptoeing didn’t improve with orthotics, they first said she had a mild case of cerebral palsy, and it wasn’t progressive. They were wrong.”
The Paolero family was introduced to the idea of getting
a service dog for Maddie at a DMRF family symposium in Chicago when they saw a demonstration by Janelle Dorner
and her service dog, Kramer. “Maddie wasn’t in a wheelchair
full time yet, but we knew her dystonia was progressing and
thought a service dog might help,” Beth said. Little did they know that Maddie would one day be the one demonstrating
her service dog at dystonia conferences and bringing her dog
to Washington, D.C., to meet with senators and advocate on
behalf of the dystonia community.
Maddie got her first dog, Reno, a Labrador/Golden Retriever
mix, when she was 13 through Canine Companions. At 29,
she’s had her current dog, JJ, also a Lab/Golden mix for about four years. Maddie credits much of her independence
to Reno and JJ. JJ even attended Rhode Island Community
College with Maddie, who recently earned her medical insurance coding certificate.
His ability to “get” is the most important task JJ performs for
Maddie who uses a wheelchair and struggles with fine motor control. When she drops things, JJ is there to pick them up
for her. He performs many other physical tasks for Maddie,
but his ability to make her smile is a bonus benefit. “He’s a good snuggler, and he’s funny,” Maddie said. “He likes to play and sing with a ball in his mouth.”
What to Expect with the Application Process
Service dog organizations have similar application processes and can take up to two years from initial application to bringing a service dog home. (See accompanying article for a list
of certified service dog organizations.) The first step is to
submit an online interest form through the organization’s
website. If you qualify, they will send a more detailed application, which asks for information from your doctor, inquires about the home setting, and other details.
When Maddie and Beth applied with Canine Companions, they
conducted a phone interview to learn more about Maddie’s
specific needs, tasks they’d like the dog to perform, and the
kind of temperament they want in the dog. “Do you want it to be goofy and playful or more reserved? Maddie wanted a
dog that licks a lot, but not everyone wants that,” Beth said.
“You have to wait to see if you’re going to be invited to
team training, which happens four times a year for Canine
Companions,” she said.
Because they live in Rhode Island, Beth and Maddie were
invited to Canine Companion’s Northeast Training Center in
Medford, NY, to meet and train with their dog. Team training
lasts for two weeks, and Canine Companions, like most reputable service dog organizations, covers all accommodations.
The first few days you work with a few different dogs, but by day
three you get your pre-match,” Beth said. The newly matched service dog then goes everywhere with their person, including dorm rooms at night so they can bond with the dog. During the training, Beth and Maddie learned 50 different commands and went on field trips with the dog to learn how to work with him in public. “We went to a mall food court, and the dog is not supposed to eat the food that is thrown under the table,” Beth said. “You learn that dogs aren’t robots and what to do when they do something wrong. You really feel confident when you leave there after the two weeks of intense training.”
A Service Dog’s Life
Dee Linde, who has tardive dystonia, went through a similar process with her service dogs from America’s VetDogs. She had her first service dog, a black Labrador, Violet, for five years until the dog had to retire early because of allergies. Dee got her current dog, a Golden Retriever, Murphy, in April last year. Canine Companions and America’s VetDogs, like many service dog organizations, breed and train the dogs from puppyhood. They typically use Labradors, Goldens and often a mix of the two. “Goldens have a really soft mouth and are a little goofier, and Labs are very focused,” said Beth, who has become a volunteer puppy raiser for Canine Companions.
Puppy raisers train the dogs general obedience and socialization in their homes for the first 1.5 years. The dogs then go through more advanced training for another six months before being matched at about age 2. They usually start thinking about retiring the dog around age 10, younger if the dog can no longer do the tasks for various reasons.
“It’s a big responsibility. It’s not like having a pet where you can just have it out in the yard and let it wander off and do whatever it wants to,” Dee said. “You have to be with the dog at all times, take him out on a leash when he needs to go to the bathroom. You need to keep up his daily routine and feeding schedule. It is an important part of being a team.”
Reputable service dog organizations keep close tabs on the dog’s health and provide ongoing support and training to service dog families throughout the life of the dog. Owners are expected to take their dogs to regular veterinarian checkups where the vet fills out a report for the organization ensuring the dog is a proper weight, nails trimmed, coat groomed, and generally healthy.
Physical Tasks and
Murphy does many physical tasks for Dee, like picking things up, getting her phone, and pushing the handicap buttons to open doors. She no longer needs to use a cane or walker because Murphy helps her balance, especially when she goes up and down stairs.
“It’s hard to say what he does for me because I don’t think about it anymore. He just does it. He’s an extension of me,” Dee said. “He’s so bonded to me and so dedicated. He just looks at me like, ‘What can I do for you next?’ He’s wonderful.”
JJ is particularly helpful for Maddie when it’s shower time. The dog turns on the bathroom light, helps her remove her clothes, and even puts them in the hamper. “He makes me more independent,” Maddie said. JJ provides peace of mind for Beth too because she can leave Maddie with JJ if she needs to leave the house or be in separate meeting room at church, for example.
Both JJ and Murphy know some extra commands to assist in high-anxiety situations for Maddie and Dee. When JJ hears the command “cover”, he lays across Maddie’s body to provide comfort with his body weight. This also helps when she’s on the ground doing physical therapy.
Murphy understands “center” and will stand in front of Dee between her and another person to give her some personal space when they’re talking. One of Dee’s favorite commands is “rest”, which she often uses at medical appointments to help ease her anxiety. The dog will rest his head on Dee’s leg or hand, so she can stroke his soft ears. “It’s extremely calming,” she said. Along with the physical help a service dog provides, the companionship and responsibility of handling a service dog have tangible benefits for people with dystonia. “It’s a distraction, something else to think about and care for,” Beth said. “The social crutch of the dog is nice sometimes too. Instead of being seen as ‘the girl with the wheelchair,’ she’s ‘the girl with a really cool dog.’”
Maddie and Dee’s service dogs have become an invaluable part of their lives, but there is much to consider. They offer these tips for others with dystonia who might benefit from a service dog:
Do your research.
Make sure the organization is accredited by Assistance Dogs International (ADI). Their website, assistancedogsinternational.org, has a member search that can help you narrow down options according to your specific needs and location. These are nonprofit organizations that should not charge you for the dogs or their training. In some cases, even medical bills for the dog may be covered. For Dee, Murphy is registered with the U.S. Department of Veterans Affairs as a dog of record and is considered a prosthetic. The VA pays for insurance that covers all medical bills for the life of the dog.
Start the application process early.
It can take 6 months to two years to get a service dog, depending on the organization. “If you’re even thinking about getting a service dog, go ahead and sign up,” Beth said. “It’s a long process, long waiting lists, and you can always back out or postpone if circumstances change.”
Know your ADA rights.
Because these dogs are officially certified as service dogs, they should be allowed to go anywhere with you. “Even restaurants,” said Dee who had a bad experience with a restaurant owner not wanting her to bring Murphy in. You need to fill out a special form 48 hours before air travel, so planning is key. “Most airlines are very agreeable as long as it’s a legitimate service dog,” she said. The physical tasks a service dog can perform for someone with dystonia can open a whole new world of independence and possibility. The emotional benefits are a very welcome side effect too. “Murphy’s always smiling,” Dee said. “He fills my heart with so much joy and love. You look at him and can’t help but feel happy.”
EXPLORE SERVICE DOG ORGANIZATIONS
Many reputable service dog organizations can assist people living with dystonia, but here is a short list of the more commonly used programs. There should be no cost to be paired with a service dog from these organizations.
America’s VetDogs | vetdogs.org
America’s VetDogs provides service dogs to enhance mobility and renew independence to veterans, active-duty service members, and first responders with disabilities. The training center is based in Smithtown, NY.
Canine Companions | canine.org
The largest service dog organization, Canine Companions has provided more than 7,300 highly trained service dogs to people with disabilities. The organization has six regional training centers throughout the U.S.
Dogs for Better Lives dogsforbetterlives.org
Dogs for Better Lives is one of the few national organizations that trains shelter dogs to become service dogs—in addition to utilizing purpose-bred dogs. Campuses are in Central Point, OR and East Falmouth, MA.
Freedom Service Dogs freedomservicedogs.org
Founded in 1987, Freedom Service Dogs has grown to become one of the leading service dog organizations in the country. The training and breeding facility is in Englewood, CO.
NEADS® World Class Service Dogs NEADS.org
NEADS began as the original hearing dog program and expanded to service dogs in 1987. Its facility is based in Princeton, MA, and 95% of puppies are trained by prison inmates.
English