The Face of Epilepsy: How One Pet Owner Is Staring It Down First published in the Australian Shepherd Journal by Stevens Parr Pam Douglas isn’t a breeder, an exhibitor, a judge, or a fancier. She is “just” a pet owner with an epileptic Aussie. But unlike many pet owners, she is not resigned to the suffering this malady inflicts. She is out to fight it. She has already put together one advertising appeal in the Journal. Titled “The Face of Epilepsy,” it shows a picture of her blue merle, Toby, peeking out from among his toys. In a few heart-rending words, it tells his sad story, calling on everyone with affected Aussies to help the University of Missouri with its research of the illness. This issue of the Journal brings another ad, this one a memorial to Shadow, a puppy that succumbed to the disease. Again there is an appeal to help the University of Missouri. Who is Pam Douglas? And why is she in the fight? We decided to find out. She practiced law in the East, but then asthma and related complications forced early retirement. Seven years ago she moved with her husband to Southern California, where the drier climate is better for her health. Her three daughters were grown and on their own, leaving Pam with the proverbial empty nest. “We had had dogs our entire life, though they were always Collies and Samoyeds,” she says. “We wanted to have another ‘child’ in the house, so we got our boy, Toby.” There was no thought of breeding him; he was simply to be a pet. “Where I got caught,” she continues, “is that even though I have the legal background as a researcher and knew to ask about hips and eyes, I didn’t realize that epilepsy is a problem in this breed.” Toby started having petit mal seizures at age 10 months and continued to have them until his first grand mal seizure at 13 months. “I had always thought of seizures as grand mal, even though intellectually, I knew they could be smaller,” Pam remembers. “When I was looking at these episodes, I didn’t know what they were.” But she knew that Toby’s behavior wasn’t normal, so she took him to three different animal hospitals. Incredibly, none of the three veterinarians who examined him could reach the correct diagnosis. Pam recalls sadly, “One vet actually asked, ‘Has the dog ever had seizures?’ Right there while we were actually witnessing him have one.” All kinds of tests were done. The reclaimed water from the adjoining golf course was checked. Result: negative. Then Pam remembered that golf balls can contain lead. That was checked, because Toby was always getting stray golf balls. She laughs, “He thinks there are all these wonderful people, throwing him balls.” But that was also negative. Finally, one Sunday morning, Toby keeled over with a classic grand mal seizure. “At that point, it didn’t take a doctor to figure it out.” Even so, there were many more tests, because the only way to diagnose idiopathic epilepsy is to rule out all the other possibilities. As Pam says, “It’s diagnosis by default.” Around $1,500 was spent on an MRI. Another $700 went for a spinal tap. “We spent from beginning to end almost $5,000!” Beyond the expense and trauma, there is this: “You feel so guilty. And you will drive yourself crazy asking ‘What if?’ In the two months before this dog literally went over into a grand mal seizure, if one of these vets could have diagnosed what they were seeing—because I rushed him in repeatedly for what were then partial seizures—if it could have been diagnosed and meds started sooner, could we have prevented this from getting to this point?” She knows that Toby was headed for problems regardless of what was done, but the feeling of guilt remains. Pam contacted Toby’s breeders and the breeder of Toby’s sire. By her account these were not easy conversations, nor very helpful ultimately. They stretched intermittently from spring to early fall of last year. During that time she was educating herself on the disease and so became acquainted with the University of Missouri’s research into canine epilepsy. She says she pleaded with the breeders and the stud dog breeder to donate blood to the project. But she felt her efforts were going nowhere. Finally, she remembers telling one of them: “If you can’t give blood, I can’t drop this. I am not going to sweep this under the carpet.” It’s important to note that the University of Missouri has many blood donations from diverse but not necessarily related Aussies. The DNA from these samples is useful, but not nearly so useful as the DNA from families, i.e., affected Aussies and their siblings. Ideally, DNA should be collected from the parents and grandparents too. It was blood donations from Toby’s siblings that Pam was pursuing in her conversations with the breeders and the stud dog owner. Despite the disappointment she felt at the hands of the breeders, Pam was getting help elsewhere, particularly from C. A. Sharp. Where no one appeared willing to listen, C. A. did. “Initially, that’s all she did,” recalls Pam. “She listened to me. She let me get it all out. In those early days, if I didn’t have her, I don’t know what I would have done.” Then C. A. began steering her towards various groups and resources available to those who have “epi-dogs.” Eventually, the idea emerged of doing an advertisement about Toby. Pam submitted “The Face of Epilepsy” to the Journal. Though the ad certainly had the potential to stir controversy, the Journal and the USASA Board agreed that it represented an appropriate appeal on a vital issue. So it ran for the first time anywhere in the May/June issue of the magazine. Pam was prepared for a negative reaction. But it didn’t come. Instead there were just messages of support, thanking her for the ad and thanking her for the courage to place it. Unwilling to give up on finding at least some of Toby’s siblings, Pam placed a small ad in the pet section of the Orange County Register. Under the heading Australian Shepherds, it began: “Searching for full or half siblings of our dog.” There was a line on Toby’s parents after which it concluded, “We have important health info to share.” No one responded with information on any of Toby’s siblings. However, there was a call from a couple that recognized the kennel name on Toby’s sire. An exchange ensued in which Pam learned about Shadow, an Aussie puppy so badly affected by epilepsy that at 11 months, he had to be euthanized. This issue of the Journal carries a memorial ad to Shadow. The point is the same as Toby’s ad: “Epilepsy threatens the future of our breed. Please give blood.” Readers will see that Shadow’s ad is sponsored by Toby’s Foundation, which is Pam’s initiative to aid pet owners of epi-dogs. “We’re not here to compete with ASHGI (Australian Shepherd Health and Genetics Institute) or AussieGenes. We’re here to complement, supplement, and help. We’re going after the pet owners, because they’re completely out of the loop; they don’t know what’s happening. When it happens to them, they think they’re alone, and they suffer in their aloneness.” The concept is not only to disseminate information, but also to provide financial assistance to pet owners who can’t afford the MRI’s, the spinal taps, the blood tests, etc., that are involved in identifying epilepsy. There will be more advertising, but Pam stresses that the foundation will only use dogs who, like Shadow, have been medically proven and documented as affected. Above all, she wants the University of Missouri to have another important resource—the pet owner—in their efforts at isolating a genetic marker for the disease. “I want these dogs to have some meaning. So let’s get the diagnosis.” There is a website at www.tobysfoundation.org and Pam has filed with the IRS for tax-exempt status, which she expects will be granted some time within the next four to eight months. She smiles when considering how far she has come since that simple, innocent purchase of a pet. She observes, “This is something I have a passion about. It’s something I can do.” Toby still struggles with epilepsy. He recently survived a dangerous bout of cluster seizures and, as of this writing, is fending off a case of pancreatitis, possibly brought on by medications. But Pam has few regrets. She recounts a conversation with her husband. “I said to him, ‘You know, if I had it to do all over—and, yes, you can learn and there are some things you would do differently—I would say ‘Yes!’ to Toby again’. I mean, he’s wonderful. He’s a tremendous dog. We love him. I would have to do it all over. I couldn’t say ‘no’ to Toby Douglas.” Who is Pam Douglas? She’s a voice from the largest Aussie community of all—the pet owners. And she’s trying to make a difference in the fight against canine epilepsy.