Like many narcoleptics, my Excessive Daytime Sleepiness (EDS) became problematic when I was 15. Doctors hospitalized me then and again at age 16 to ferret out the reason for my intense need to sleep. The doctors were clueless, and simply told me to ease back on my load at school. Like the ocean's tides, my narcolepsy ebbed and flowed in the beginning years. I married and had 3 sons. At times it greatly affected my parenting skills and life in general. Other times I was what I considered my usual spunky, energetic, happy go lucky self.
As the years progressed, so did the narcolepsy. I was misdiagnosed with more ailments than I can even remember, and made visits to one specialist after another. At the age of 45, I was finally diagnosed correctly.
With my boys grown and living far away from home, I was alone to deal with this constant sleepiness. It became difficult to get out and do what everyone else did on a daily basis. I had once been the VP of a marketing firm. Now I was lucky if I could do basic household chores, or even leave my house to shop for groceries.
The possibility of a cataplexy (C) attack in public when I was all alone, created anxiety. Initially my attacks lasted only minutes. Now I can be completely paralyzed as long as 20-30 min. I became housebound, almost agoraphobic. Friends fell by the wayside. I had been very active in my church, but my ability to participate became problematic. Finally, getting up and getting appropriately dressed for church (pajamas or sweats weren't considered acceptable), and driving to get to church by 9am on Sunday mornings became impossible. Out of their ignorance, many in my church ‘family' made assumptions, passed judgment, told me I wasn't praying hard enough and had fallen down on my faith or I'd be healed. I was deemed unworthy. My world was shrinking, and loneliness, depression and anxiety became full-time companions.
After losing a son and my father to suicide, I knew I was high risk. I didn't want to die, but I didn't want to live like this either. Late evenings were the worst times for me. Some evenings were so bad, that I called Empact, a suicide hotline. Being able to talk with someone helped me get myself off to bed to survive another day
One evening an Empact phone counselor was concerned enough that she sent a team to my house. A man and a woman arrived to see what they could do to help me deal with the utter hopelessness and anxiety I felt. We talked about the isolation brought on by narcolepsy and cataplexy and the toll it was taking on me. Fate stepped in that night as the gentleman of the team once worked at Barrows Neurological Institute and was well versed on N and C. He suggested I might benefit from having a service dog.
A service dog could help with my anxiety about having a C attack in public as well as easing the feeling of loneliness. Even having those lengthy C attacks at home left me feeling very alone and anxious. A service dog could provide much needed comfort. In public the service dog would readily identify me as having a medical condition. She would wear a laminated card on her vest explaining what was happening to me should I collapse.
I gave it much thought. Could a dog relieve my anxiety and help with my oppressive depression? I had been feeling so alone. Perhaps a service dog was the answer to a prayer.
There was a problem, however. Service dogs came with a hefty price tag. After some investigating I learned there are many ways to get a certified service dog. With a price tag of several thousand dollars, I was relieved to discover there are some organizations that provide dogs at no cost to the recipient. These dogs are sponsored by generous donations from large corporations as well as philanthropic individuals who understood the important role service dogs play. I settled on an organization that fit my needs, filled out an application on line that I could print out and send in immediately, and more importantly, there would be no cost to me for a dog, who incidentally I would later find out, cost $16,000!
The application process was lengthy, requiring a lot of thought, but not difficult. I needed to include letters – one from a professional (such as a counselor) and one from a friend. There was a page for my doctor to fill out. In January of 2002 I mailed in my completed packet. In just 4 months I learned that in the following January I would fly to Atlanta to receive my dog and attend a 2 week training course! Hopefulness traded places with hopelessness.
There were 18 dogs and 14 recipients at my training camp. I was quite sure I would love every one of those dogs. How could I settle on just one? Each recipient worked with every dog several times to see if we felt a rapport with any dogs in particular. Surprisingly there were differences in how the dogs related to each of us. We had to make a list of 3 dogs that we felt could be a good fit for us. Olivia was at the top of my list. Apparently the staff felt we were a good match too, and I was awarded the dog that my heart told me should be mine.
During the 2 weeks at camp, we learned how to handle our dogs. We practiced being in public by making trips to WalMart, the mall, and several restaurants. At 18 months old, the dogs are fully trained. Now we had to be trained and learn the 80+ commands that each dog already knew well. Our class of 14 formed close bonds. I could see miracles unfolding even in those 2 weeks with people and how already their lives were changing because they now had their service dogs.
I learned the importance of maintaining the Alpha position in our little ‘pack' for Olivia to be as effective as possible as a service dog. She is not my pet and I don't treat her like one (she IS, however, my best friend). I heap lots of love on her. She can receive commands only from me. Only I can feed her, give her treats, give her water and I am the only one who can pile on the love. This reinforces her loyalty to me. She must receive permission from me to be petted, because while it might be tempting to let others interact with my dog, her job is to stay focused on me.
Positive reinforcement, using correction when necessary and not punishment, is the proper way to handle our dogs. Your goal is to have the dog respect you and want to please you, not obey you out of fear. Consistency is paramount.
I learned there was an added benefit to having a service dog. There are responsibilities. This meant that I no longer could think just about me, my sleepiness, my loneliness, my anxiety and depression. I was responsible for this beautiful dog. I've had days that were just horribly filled with depression, but being so closely bonded, Olivia picked up on that. That is enough to make me ‘fake it til I make it' because keeping Olivia happy is important to me.
Having the responsibility of caring for your service dog helps to get your mind off your own limitations. You might not feel up to going for a walk, but you'll get out and do it for your dog. The unconditional love and the fact that your dog's ‘job' is to take care of you and you of him, takes the constant focus of your disability off of yourself.
Many organizations train their dogs for multiple kinds of disabilities and at training camp, your dog's trainer can help tailor your dog's skills to your specific needs. What your dog does for you depends on your particular needs. For instance, it's not unusual for a PWN to have fibromyalgia, and if that is the case, your dog can be fitted with a harness to give you stability when walking.
It would not be dramatic to say Olivia has saved my life. Without her these past 6 years, there may have come an evening when I would give up and not have reached out to the suicide hot line.
Interestingly, since I have had Olivia, while I have had C attacks in public, I have been fortunate enough to have been with a friend. I have not had one C attack where I was alone when I collapsed. Perhaps she has brought me good luck.
During a C attack at home, Olivia lies by my side, oftentimes licking every available inch of skin she can find, as if she is either trying to ‘wake me up' or soothe me, I'm not sure which. Dogs cannot predict C attacks like they can predict seizures, as PWN's do not give off electrical changes in their brain preceding an attack. However, it is entirely possible your dog may come to recognize your triggers and hurry to your side before you've hit the floor.
Incidentally, I learned my dog came with additional benefits. Should I have any hypnogogic hallucinations, if I see that she is sleeping soundly next to me, it's a good indication that the alien in my bedroom is a figment of my narcoleptic mind. She is also my own personal GPS service.
We were on a walk when I was overcome by sleepiness. I struggled to keep my eyes open, until finally I couldn't anymore. Olivia and I have been together a long time, so she knows the streets around here well, and in our walks, we don't stray terribly far from home. We were still 2 blocks from home, but I felt confident that Olivia could get me home. I simply gave her the command to ‘Go home' (our own personal command) and I closed my eyes and relied on her.
She kept to the sidewalk, not stopping to sniff like she would usually do, and when we reached our street, she turned in and headed for our house, which is in the far corner of the big square cul de sac we live in. I did, every little bit, open one eye a tiny bit to check on our progress, but it went of without a hitch. She headed straight for our house.
On another walk, I went into a narcoleptic fog and became confused. I passed up our street, though I hadn't realized it. Olivia pulled and tugged to get me to turn down our street, and I had no idea what had gotten into her. I forced her to continue on with me and we turned down what amounted to the wrong street. I looked around and realized nothing looked familiar. I simply stood there, not sure what was going on, being in such a fog. By chance I turned around and spotted the street sign and saw we had gone one block too far. Only then did I realize that Olivia was doing her darnedest to get me to turn down the right street on the previous block.
Our bond is strong, and neither of us does well if we've been separated. She recently had extensive oral surgery and I don't know which one of us had the harder time being apart. I was there when she awakened from the anesthetic and they put me in a room where I was sitting on the floor when they brought Olivia in. She made a beeline for me, plopped down, lay her head on my leg, and promptly closed her eyes. We had an incredible vet and we were allowed to stay in that room together for the 2 hours she needed to recuperate before she was allowed to come home.
I now help other narcoleptics decide if a service dog is right for them, and provide them with information on the various ways of obtaining one, whether it be through a non-profit organization that provides dogs at no cost to the recipient, or by seeking a private certified trainer and finding the right dog for you. Right now I have 5 folks on waiting lists to receive their dogs that are going through non-profit organizations. My short wait was unusual. If going through an organization, you must be prepared to wait, sometimes as long as a few years. Each situation is different.
Does a service dog sound like something you are considering? If so, here are some things to think about:
I've been told I'm mean not to allow her to be petted. I've had people assume that I'm blind – even when they just saw me pull into a parking space, and get out of the driver's side of my car! The next time someone asks me if I'm blind even though they just saw me parking my car, I'm going to tell them, that yes, I am blind. My dog is actually driving from the back seat. I only sit in the front driver's seat so as not to draw attention to us.
Each person develops their own style in how to handle a curious, often uneducated and sometimes rude public. I always keep in mind that oftentimes Olivia and I are someone's first encounter with a service dog team. We could be responsible for someone's lasting impression, so I find myself biting my tongue a lot.
Dealing with the public is constant and just getting through the grocery store can take longer. It's a small price to pay, though, for something as precious as your service dog. On the positive side, it often makes a trip to the store more enjoyable because it almost becomes a social outing, if you're so inclined to stop and talk with folks. One thing is certain. If you have stores you go to regularly, the employees actually look forward to seeing the two of you. Most people don't know my name, but when I go to our grocery store or the neighborhood Walgreens, I hear a lot of, “Olivia's here!” or “Here comes our favorite customer, Olivia!”
If you are so inclined, you can use the opportunities that come your way from curious people to educate them on the role service dogs play in the community and that not all disabilities are obvious.
For the first few years I gave many demonstrations in classrooms, teaching children the role of service dogs, demonstrating some of her skills, and explaining service dog etiquette, such as you never pet a working dog, nor should you even talk to it. You should always address your questions to the owner. As my energy level continues to drop, I no longer give demos. However I have spoken at two Narcolepsy Network conferences to let narcoleptics know that having a service dog may be beneficial to them.
If you think you could benefit from having a service dog, there are several ways of obtaining one. There are many organizations to choose from. Some charge for their dogs, some provide sponsored dogs free of charge to the recipient, and some provide dogs at a reduced rate with sponsors helping with the cost. There is also an organization whose function is to try to find sponsors that will help with the costs of getting a service dog.
When dealing with a service dog organization, you must be prepared to attend a 2 week training class, as you need to be trained as well. Working with a service dog is much different than giving your pet commands.
There are individual certified trainers who will find a good dog for you and train it specifically for your needs. You need to do your homework because anyone can call themselves a trainer. And dogs must pass the tests to become certified.
There are trainers who will take your own dog, if they deem it truly trainable and turn it into a service dog. The problem with this is many people believe their dogs are so smart and so well behaved, they don't realize that training a dog for service goes beyond a well behaved pet. Also, if it's been your pet, it will need to unlearn many behaviors, as will you.
If you have any questions, I'm always available to answer them or find someone who can. I keep a list of organizations that have good reputations. We can find something that is a good fit for you.
Be aware that if you get a blond Golden Retriever or a yellow Lab (the 2 most popular breeds for service), you may want to invest in a lot of khaki colored clothes. A red Golden Retriever may call for brown clothes, and a black Lab, well, obviously a lot of black would be in order. Don't have the money for a new wardrobe? Those roller lint brushes work great.
You can reach me at firstname.lastname@example.org . Now, if you'll excuse me, Olivia believes I've spent enough time at the keyboard and a nice walk is in order.