Did you know that less than 25 percent of #SUDEP deaths in children with #epilepsy are directly seizure-related? Here’s what you need to know about the other risks. bit.ly/1YDjjf3 #MyLifeIsBright #VNSTherapy
Great day at Capitol Hill for our Teens Speak Up participants! We thank everyone who partake in our Letter Writing campaign. We carried your letters to DC and they touched the hearts of those we met! Let's continue to push Congress to further the cause to find cures! #EndEpilepsy
David YangI believe when a dog has developed a strong bond with its person it can and will alert before it happens. Until that happens a dog can be trained to hit a button for its handler while in a seizure to alert other family members. Great for children especially during night time hours. We have a German Shepard that is being trained to do just that for our 11 yr old daughter. They are forming a strong bond quick.
We are touched by the stories we hear from veterans about their experience with post-traumatic epilepsy when they return home from service. They motivate us to find a cure for all those touched by epilepsy as a result of traumatic brain injuries. With your help we can achieve that mission.
Join us on May 9 at our Annual Chicago Benefit in making a difference together. bit.ly/1OtVYqf
Yesterday was the start of this year's Teens Speak Up/Public Policy Institute in Washington DC. Our own teen advocate, Cailin, spoke about her advocacy experiences to a pack-filled room at the start of this year's Teens Speak Up program in Washington DC! Drake and Cailin- both teens in the middle- gave their advice to the new class of teen advocates participating in the program. #TSU #EndEpilepsy
Harrison Ford, who just last month announced that his daughter battles #epilepsy, auctioned off his Star Wars #ForceAwakens jacket to raise money for epilepsy #research at the NYU Langone Medical Center and NYU FACES. Share to inspire #epilepsyawareness! cbsn.ws/1SNZ2Pf #MyLifeIsBright #VNSTherapy
It was a beautiful day for the #VNSTherapy team from LivaNova to be in Washington, D.C. for the #EpilepsyWalk! Thanks to everyone who stopped by and walked in honor of #epilepsyawareness! #MyLifeIsBright
Vicky says, "I felt uncomfortable speaking about my epilepsy, and so those around me never had their misconceptions challenged." She's breaking her cycle of silence and telling her story while running the London Marathon for Epilepsy Action. Read Vicky's story and share how you challenge misconceptions about epilepsy. huff.to/1SN1k1m
My name is Dustin and I have post traumatic epilepsy that was the result of a head trauma injury that occurred in 1995. I started having seizures a few years later when damage to my brain got progressively worse. I was terrified because the seizures were unpredictable and put me in dangerous situations. I also sustained a lot of concessions as a result of the seizures that I had. In 2009, I applied for a service dog through Amazing Tails, LLC in Oxford, PA. (amazingservicedogs.com/getting-started/) I was eventually paired with a Labradoodle named Justin. He changed my life.
There are two types of service dogs that help people with seizures, seizure response dogs and seizure alert dogs. Most organizations train seizure response dogs. The service they provide helps their person remain safe during and after a seizure and also comforts them as they come out of the postictal phase by licking the face or hands. The dog is familiar to the person and minimizes the confusion one experiences after a seizure event. The other type of dog is a seizure alert dog. Seizure alert dogs "alert" their person prior to a seizure starting and gives them time to prepare for the event by getting to a safe place, putting on protective headgear, and notifying friends and family that they are about to have a seizure. My dog usually gives me 15 - 20 minutes notice before a seizure starts. Some dogs, including mine, even have different kinds of alerting behavior that helps me determine the type of seizure I am going to have and its possible severity.
The reason that most organizations only train seizure response dogs is because dogs can't be trained to alert. Either a dog has the gift and ability to alert or it doesn't and can only be trained to respond to an event in a specific way. Less than 1 percent of all dogs have the ability to provide these life saving alerts. Another reason response dogs make up a majority of the seizure related service dogs is because most organizations breed their own dogs and there is no guarantee that they will possess this gift.
I chose to get my dog from Amazing Tails, LLC because they specialize in alerting dogs. The alerting dogs are trained for seizure response too, but the alerting service is the more important skill for most people with Epilepsy. I also chose Amazing Tails because unlike other organizations, they don't breed dogs. Most of the dogs they select for the program are rescues. This allows them to find specific dogs and prevents them from having to drop dogs from the program because they can't alert.
When I completed my final training on March 17th of 2011, my life changed. Justin gave me enough time to prepare and increased my safety by a factor of ten. He was trained for basic obedience and learned skills that helped me manage the various stages of the seizures I was having. Shortly after my training was complete, I was invited to be a part of their organization as a training assistant, Technical director, and non profit coordinator. I was educated in all things service dog, including the requirements a dog must meet, the ADA regulations, and the training a dog's person must complete in order to recognize and respond to alerts. They also learn how to be safe as they work with their dog in public.
Epilepsy awareness is very special for me. I am able to connect with people and organizations that genuinely care about the issues faced by people that suffer from epilepsy. It also allows me to put these dogs in the spotlight and share my experiences with other people that have epilepsy and are on the verge of giving up hope. I want everyone to know that there are options out there that will improve the quality of life for anyone who faces this disability. I would like to offer my experience and contacts to help others acquire a seizure alert dog. It drastically improved my life. I would even go as far as to say it gave me my life back. I wasn't afraid to go out and had confidence that I could manage my disability without having to depend on others to keep me safe.
Finally, I wanted to say that medication was not working. I couldn't get my seizures under control with the traditional anticonvulsant medications that are usually used to treat epilepsy. I tried them all. They usually resulted in severe loss of cognitive response and destroyed my kidneys and thyroid. I now have a VNS (Vegas Nerve Stimulator) implanted in my body. The VNS comes with a magnet. The unit sends regulated pulses to my brain via the Vegas nerve bundle. The magnet, when swiped across the generator in my chest, will change the mode of the VNS to a more powerful signal and interrupts the seizure event. This changed my life because I could use my dog and the VNS together to get more control over my seizures than any medications. When he alerts, I will go to a quiet place and swipe my magnet across the VNS a few times while I am waiting for about 20 minutes to prepare in case I do have a one. I have a huge Love-Sac memory foam bean bag that I climb into when I get an alert. The memory foam sucks me in and keeps my body in place. It also protects my head. My dog lays across my lap. Because I am deep in the bean bag, he is supported my the bag and doesn't crush me or make my breathing difficult during a seizure. I highly recommend looking into that as well.
Since the VNS unit has been turned up to therapeutic levels, I have noticed that most of the seizures I was supposed to have never start because my dog helped me use the VNS to stop them. It is not foolproof. Sometimes my dog gets more concerned and gives me more deliberate alerts. When he does I know that the seizure that he is alerting to will probably be a big one. In these situations I will take a lorazepam along with the magnet swipes. Because I have 15 to 20 minutes notice before the seizure, the Lorazepam has time to work its way into my system and prevent it from starting.
I wanted to share this information because I know that if it works for me, there is a good possibility that other people that face epilepsy can use the same tools and techniques to control theirs. It is my hope that others can also use a dog along with medication or VNS to stop their seizures too. If you are interested in learning more about seizure alert dogs or if you would like to apply to find out if a seizure alert dog is a good solution for you, I recommend that you go to the Amazing Tails, LLC website amazingservicedogs.com and fill out the application. The trainers are super nice and have over 20 years of experience training and placing these life saving dogs with the right people. Don't be afraid, you can take the first step and possibly change your life like I did when I started working with my dog.
Unfortunately, I had to put my first dog to sleep because he had bone cancer that spread to his lungs. Justin and I were together all the time. When I went for my final training on March 17, 2011, Amazing Tails met me at the Philadelphia airport. They had me put on a waist leash and connected it to my new dog Justin. From that moment until the moment he died, we spent 33,742 hours right next to each other. In that span of time, we were separated less than 12 hours. This was due to a hospital stay in PA. I have been in the hospital other times, but he stayed with me the whole time. He would ride on the "cart" with me to get X-rays and other tests. He was even in an operating room with me once during a surgery. It was at the doctors request. He was next to me at the Dentist, the neurologist office and everywhere else I went. He was an expert on Subways, trains, cabs, and cars. He flew with me over 100 times at my feet. Each hour that we spent together strengthened our bond and he got better and better at reading my body and improving his alert times and skills. I can't think of anyone or anything that have been right next to for that long except for my own body parts. When he died I felt like someone amputated a limb.
Amazing Tails did a great job at training him. His presence was benign and most people didn't even know he was there. That was impressive considering that he was tall and weighed almost 80 pounds. I am fortunate to have been able work with him. Thank God that he was always there for me. I am sure that he saved my life multiple times. I am sharing this with you, not so you feel sorry for me, I am just trying to illustrate just how close a person is with their dog. It strengthens their ability to do their job. He could read me and knew me better than I knew myself most of the time. It was a two way street because I could read him just as well. I was able to understand his alerting behavior even if it was so subtle that the trainers couldn't tell if he was alerting. It got to the point that we could communicate with facial expressions. I didn't have to say a word to him and he knew exactly what I wanted and I knew exactly what he wanted and was trying to say. One of the most amazing things about Justin was that we could both be sound asleep and he would still wake up to alert in the middle of the night. If he couldn't wake me up he would lay across my lap to make sure that I didn't fall out of bed or hurt myself.
After Justin died, I was devastated and truly lost. I was afraid to go out and do anything because my early warning system and best friend was gone. The Amazing Tails trainers went way out of their way to quickly place another alerting dog with me so I could continue to use these methods to keep my seizures under control and continue living my life. My new partner's name is Nicholas, a Shepadoodle (German Shepard / Standard Poodle Mix) He is amazing and has never missed an alert. We already have a bond that most people will never experience in their life. He has some big paws to fill. He is trying hard every day to be just as good as Justin was at doing his job. I think that he will meet and exceed my expectations.
I want everyone who has a traumatic brain injury and/or epilepsy and reads this post to please not give up. A dog can make all the difference in the world and drastically improve the quality of your life. There is nothing I have experienced in life that is more special that the partnership and companionship thatI you will have with a seizure alert dog. Take the first step and fill out an application on the Amazing Tails website - amazingservicedogs.com/getting-started/
Did you know... the majority of people with seizures can be managed by neurologists, but the 30% or so that have difficult to control seizures and do not respond to standard treatment require the next level of care at an epilepsy center. Learn what a Comprehensive Epilepsy Center is and how it can help: bit.ly/1qRoSvQ
A lot of people ask me what happens to a service dog if it's owner has to go to the hospital. My last dog Justin stayed with me 3 times. Last week, was Nicholas's first time. I had a kidney stone that had to be surgically removed. Nicholas stayed with me every step of the way except for 3 hours during the actual surgery. He rode in the ambulance with me. The paramedics were very accommodating as well. They said it was the first time they ever transported a patient with a service dog. Nicholas acted like a pro and proved that he is good at "being sick" with me in the hospital. The nurses made sure that there was someone to walk him about every 4 hours. when I had to go down to x-ray, he rode with me on the bed and stayed behind the screen with the tech. Being in the hospital with a dog beats being alone.
Hailey Ashmore relies on her dog Flynn to do more than the average dog. He has become her lifeline. He can alert her to oncoming seizures, and fetch help when she needs it. Training as a medical alert dog takes lots of hard work and diligence, and the Australian Shepherd has come a long way […]
Epilepsy is a central nervous system disorder that affects one in 26 people in the US alone. This doesn't mean that each person that suffers a seizure is a full-blown epileptic, but that epilepsy symptoms are more prevalent than is widely known or understood by the general public. Some 10 percent of…
How do Academy Award-winning celebrities support #epilepsyawareness? Two-time Oscar-winner Emma Thompson is involved in The Daisy Garland, a charity that aims to support those with drug-resistant epilepsy. #GoPurple #Oscars
I have been asked by my school to give a 5 minutes talk to each year group from Early Years to Year 6 any ideas what I could say to each class. Early years is particularly worrying regarding describing epilepsy so not to confuse or frighten them.