Tuesday, April 30, 2013

Youth With Epilepsy Wanted for Camp Neuro Revolution 2013!

First time hearing about Camp Neuro Revolution? Learn more about us by visiting our facebook page.

Apply to Participate as a Staff Member at Camp Neuro Revolution 2013!

Staff Members consist of "Staff," "Nurses," and "Volunteers." Please read carefully, fill out thoroughly and scroll down to the very end of the google form embedded within this blog post.  Thank you so much for your interest in participating in Camp Neuro Revolution!!!

Monday, April 29, 2013

Seize: The Story - Jayson West

Jayson was born full term without any knowledge of health complications. Doctors immediately started telling us that there was something wrong with Jayson. He didn't look like other babies. We entered our first round of genetic testing and Jayson went home with us where we loved and cuddled our sweet, healthy baby.

At nearly 2 months old, Jayson caught RSV. His condition got worse quickly, and he stumped the doctors. Little did we know this would become a common occurrence. He was taken by helicopter from Riverton Hospital to Primary Children's. He spent two weeks in the hospital recovering, and was still in need of oxygen to return home after our long hospital stay. Two weeks later, Jayson seemed to be getting worse again, and our worst nightmare became our reality. Our sweet baby boy stopped breathing in his mommy's arms. After a frantic 911 call and CPR, our miracle boy came back to us. We spent the next two weeks at Primary Children's with a positive virus panel for RSV but trying to figure out what was really happening. We finally got in touch with a specialist and learned Jayson has a floppy airway condition called laryngomalia, he had been aspirating and was classified failure to thrive, and he had severe GERD. Our world changed quickly as an NJ feeding tube was placed in our baby and he was put on 3 liters of high flow oxygen as his baseline to keep him alive until surgery. We were sent home with all sorts of medical equipment to manage. Round 2 and 3 of genetic testing left us without answers and revealed to us that our little miracle had a rare condition, and we may not ever learn what it is. Jayson had surgery to help with his floppy airway, but did not seem to help as much as we had hoped. We had just started to get adjusted to the medical equipment, doctor's appointments, therapies, and our son's diagnoses when he surprised us with one of our family's biggest trials; seizures. In May of 2011 Jayson had some seizures in front of a couple of doctors and they got him in for an EEG right away. The results said normal, but the doctors knew what they had witnessed was anything but normal. We got right into a neurologist and Jayson started his seizure medication that really helped him. Over the next couple of months, Jayson's seizures would randomly escalate, we would increase medication, they would go away only to come back again a couple of months later. Clinically, the neurologist was confident he was having seizures, and it seemed he was developing new types as well.

In December of 2011, we were reminded once again how fragile life can be when Jayson once again stopped breathing for a couple of minutes while in his carseat in the car. A new MRI revealed a condition called Chiari Malformation. His cerebellum in his brain was being compressed, and there was absolutely no spinal fluid passing through. In January our brave man underwent decompression surgery which has helped him more than we dared to imagine. Jayson's oxygen requirements have gone down, he passed his swallow study and is now eating and drinking by mouth. He is also developing and meeting milestones we feared he may never meet.

One big black cloud remains over our heads: seizures. They have been escalating and in March of 2013 we got an abnormally abnormal EEG. Although the abnormality was not common for kids with seizures, the neurologist says that he could now say he is officially having seizures. Since then we have been living a crazy life of experimenting with different medications and dosages, hoping and praying something will make them stop.

Despite the overwhelming amount of challenges that Jayson has overcome, he has done it with a smile on his face! He is such a happy, determined boy. After 13 hospital stays and 6 surgeries, many ER and doctor visits, he is still fighting against the odds and showing us that he is going to prove so many people wrong. He will continue to surprise and inspire all who meet him and hear his story. Jayson truly is a little hero.

More about Jayson can be read on his blog:  www.littlejsjourney.blogspot.com

To share your story about life with epilepsy, contact Syndi@epilepsyut.org.

Monday, April 22, 2013

Seize: The Story - Lesley Donnelly

An Improvement in Epilepsy after Thirty Nine (39) years: Fifteen (15) months seizure free

I was born in Southampton, U.K., lived most of my life in Zimbabwe and have lived in South Africa for approximately eight/nine years. My epilepsy commenced at the age of sixteen (16); was this now the end of my life, career and more? Exams and education were important to set future career goals, so ahead we must go! Once exams were successfully passed, I enrolled myself at College, gained more knowledge and finally a career in the Administrative/Personal Secretarial sphere was obtained. This was the start to a great life, however, there was one handicap; Epilepsy.

I had so many questions with so many fears. The more the seizures occurred, the more friends I lost. With no one to talk to, no one to listen to, and constant fear of when a seizure might occur, I knew I must still focus on my career, but remain independent at the same time.

With the help of a small loan from my parents, I managed to find an apartment in a block of flats and my life then began to change. I found a job in a hotel close by, walked to work every day and lived an isolated life until more friends could be found. Socialising was difficult, but with wonderful bosses and a great working environment, I managed to accept my epilepsy as a life-long predicament and go forward.

Working in the hotel industry, meeting clients and guests, being promoted and transferred to different positions for plus/minus nine (9) years with one Group of Hotels, soon gave me confidence, immense happiness, taught me better administrative and inter-personal relationship skills and enabled me to now go into the outside world and navigate more. My epilepsy was still at the back of my mind, but with happiness in a good working environment the thoughts soon drifted away. I knew that as long as I took my medication regularly and kept up with my doctor's visits, my life should continue to go well.

Many years ago, we didn't have cell phones, computers or electronic devices to keep in touch with family and friends. Sharing was done by "word of mouth"; the more we shared, the more friends were found. Do not be afraid to share your epilepsy and your stories with others so they have a better understanding of you and your epilepsy. Do not be discriminated against; support each other. Wear a Medic Alert bracelet giving details of your epilepsy, medication taken and phone and registration numbers whereby contact can be made to others in times of need. These are essential and can be a life-saving device if worn.

I married about a year later, but Tom, my ex-husband of now thirty three (33) years (maybe more) was a printer by trade. He did night shift (6:00 p.m. - 6:00 a.m.), whilst I worked office hours (8:00 - 4:30 p.m.). Our two separate lives of being apart for hours and only seeing each other for a few hours every day, eventually took a toll and the marriage broke up after a four (4) year period. He had no idea what epilepsy was, how it affected me/others and also didn't understand the process during a seizure so due to fear and lack of knowledge, he finally disappeared by leaving a letter under the door. Naturally, with no husband, no marriage and suffering with epilepsy, I felt as if my life was falling apart once again!

My wonderful family then stepped in and offered financial and marital advice, divorce proceedings went ahead and eventually my divorce was granted after three (3) years. This understandably had an effect on the amount of seizures I had due to stress, emotion, hormones and other reasons. My best and only friend stood by me through this whole encounter, helped me get my life back together, and accept the fact I was now divorced but still had epilepsy. I wanted to be isolated from everyone, from my working environment, family and friends for months and years but then 6 years later after a wonderful friendship with her, she finally made me socialise more and join a dating club. Through the dating club I met my present husband who I've now been married to for twenty four (24) years; he's accepted my epilepsy. Do not let your epilepsy ruin your friendship/marriage/relationship; understanding comes from both sides and time and patience is vital during this precious time. If your partner doesn't understand your epilepsy, discuss the matter further, seek counselling for you both to find assistance and guidance together, and even join a Support Group.

We bought a house nearby and life carried on. Medication then became unavailable in Zimbabwe, so a quick decision had to be made. My epilepsy was still present but the medication wasn’t. A move was made to South Africa due to lack of medication; this is now dispatched monthly through a local Government Hospital! Praise the Lord!

Whilst trying to settle into a new country, there were many trials and tribulations with my epilepsy. More seizures occurred; I had great difficulty finding transport to visit qualified Neurologists/Neurosurgeons due to medical costs, and could only visit local General Practitioners in the process.

I wanted to reach out to others, decided to go Browsing/Googling on internet, found Epilepsy South Africa, applied for National Membership and have been on their tail ever since. Epilepsy South Africa has been the spirit behind me, given me great assistance, guidance, information, support and understanding, as well as the willpower to carry on with life.

I joined their Epinews Panel, a voluntary panel of members/people with epilepsy who collect personal stories from people with epilepsy, for their bi-annual Epinews Summer and Winter Issues each year. These articles are re-edited and sent off for publication and distribution. I love being involved in this task knowing I am helping others find faith, guidance, love and support; this has played a big part in my life.

Being a National Member and being invited to attend more than one conference on behalf of Epilepsy South Africa, has changed my outlook and epilepsy remains a background sphere in my life. We have managed to form two groups on Facebook called Epifriends Network Group and Epifriends Network Page, which give others advice and support as well as more knowledge on epilepsy. Anyone who has Facebook and Twitter please feel free to join our Group/Page on Facebook to help you meet other people, as well as different organisations with more information. You are welcome to send me a personal Friend Request, visit https://facebook.com/lesdonn, https://twitter.com/lesleydonnelly1 or https://twitter.com/epilepsymq and socialise more!

Throughout the months gone by, I was at the stage of regularly having one major tonic clonic seizure per month. On 14th January, 2012, I was sitting quietly having a cup of tea at a local store, when a seizure started without any warning, I fell off a chair, hit my head on the pavement and had back and neck injuries in the process. This once again took a toll on my body, my mind, energy level and more. A week of recuperating, lack of muscle strength, constant headaches etc. made me want to do more research.

So far, April, 2013, (15 months), I haven't had any seizures, but why is my question? My medication hasn't changed in any way, I am still on hormone replacement therapy, which I have been on for many years, but could it now be the hormonal change in womanhood to Menopause? Perhaps its being happy in oneself, constantly occupied doing something I love by supporting others or just the time for Epilepsy to disappear quietly!

At 55 years of age, and having had epilepsy for 39 years, is my life due to change? Not having seizures for 15 months has been like a miracle, but still anything can happen. I will remain positive and I hope that as more months go by, my epilepsy will disappear forever!

I will continue to research this point and hope I will soon find the reason!

Lesley Donnelly

To share your story about life with epilepsy, contact Syndi@epilepsyut.org.

Tuesday, April 16, 2013

Shake, Rattle and Roll Motorcycle and Car Show

2nd Annual Motorcycle and Car Show Fundraiser Announced
New location, new sponsors!

SALT LAKE CITY, Utah April 12, 2013 – “The best alarm clock is sunshine on chrome.” – Author Unkown

The EAU is letting it be known that it has entered into an agreement with Timpanogos Harley Davidson to host the 2nd Annual Motorcycle and Car Show Fundraiser on site in Lindon.

“We are so excited that Timp Harley Davidson has partnered with us!” said Jenn Whiting, Executive Director of the Epilepsy Association of Utah,” All we keep thinking is about how cool it will be to have our show on their front steps! Be sure to come and enjoy a fun filled day, see some rockin bikes, listen to great music, and eat at Marley’s. Hope to see you there!”
The Motorcycle and Car Show will include live music & entertainment, food, games, vendors and various activities for all ages.. More information regarding this specific event along with other information regarding the Epilepsy Association of Utah on their website at: www.epilepsyut.org

Date:       Saturday June 29th, 2013
Time:       11am- 5:00pm
Place:      Timpanogos Harley Davidson
                  555 South Geneva Road  
Lindon, UT 84042
(801) 434-4647

Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more.  Visit http://epilepsyut.org for additional information.
Press Contact:        Lindsey Palmer
Email:                        lindsey@epilepsyut.org
Website:                  www.epilepsyut.org

Monday, April 15, 2013

Seize: The Story - Nolan Moon

Nolan Moon was born on June 28, 2011 in Riverton, Utah.  Mom, Michelle, had a difficult pregnancy and Nolan was born 3 weeks early.  At just 2 weeks old, Nolan developed a horrible cough which we thought sounded a lot like asthma.  We were told it was viral, and sent home.  At the tender age of 10 weeks, we began treatments for asthma.  At 4 months old, he was diagnosed with croup, and at 5 months we were finally sent off to meet with specialists.

We were told he had severe GERD and was aspirating most of what he was taking in.  Nolan was also diagnosed with a cleft on his larynx and a narrow trachea.

It seemed were always at the Doctor or in the Hospital, Nolan had round after round of bronchitis, then aspiration pneumonia.  Shortly after his first birthday, our world changed:  Nolan had a grand mal seizure.

We had an EEG with a low percentile of normal brain activity and learned he had been having myclonic seizures for awhile. We began seizure medicine and watched how he would react.

At 14 months, Nolan began Early Intervention and Feeding Therapy.  By 17 months, we started a battle with insurance to have a percussion vest for Nolan.  The vest was helping his breathing tremendously.   It seemed every step of our journey, something new was popping up:  C Diff, RSV, high metabolism, multiple surgeries.  We were grateful to have some answers, but there was no umbrella that covered all of Nolan's symptoms.  It was time to start the journey with genetics, only to learn there was a year long waiting list.

Our list of therapists and specialists hit the double digits, and our education in all things medical reached closer to the thousands.

After what seemed like forever, we were thrilled to learn we had won our battle with insurance for the vest!  What a huge burden had been lifted!

Just a few weeks ago, we saw a new tremor pattern emerge and we rushed in for an emergency EEG.  One night, the tremors lasted 40 minutes.  One of the hardest decisions to make as a Mother is which doctor's appointment is more crucial.  We cancelled his sleep study in order to do this EEG.  We prayed for him to have a seizure or one of his new tremor episodes.  Such an odd prayer, but we needed some answers.

Our doctor promised to call us with results the moment he had them in hand.  Within 30 minutes of leaving the hospital, our phone was ringing:  Nolan has epilepsy.  We knew this diagnosis was probable, but it is different when it is your child.  We are grateful for the diagnosis and feel as though we can move on taking care of Nolan now that we understand his condition better.

Nolan is all boy:  He loves cars and trucks.  I can nearly repeat the movie Cars word for word.  He also loves fish and his big sister, Brooklyn.

If you would like to follow Nolan's Journey you can visit his blog: http://ironmanmoonsjourney.blogspot.com/

Monday, April 8, 2013

Seize: The Story - Cari Rickabaugh

I didn’t start having seizures until I was twenty years old. That was in 1996.  The first seizure that I had I was by myself, sitting on my bed, sorting through papers waiting for a friend to show up. Suddenly I had this strange feeling come over me that pushed me back on my bed and I couldn’t do anything about it or even yell for help. I blacked out and over the next thirty minutes or so, I would come to and then black out again every few minutes.  When I would come to I couldn’t  see or feel anything - but I could hear the papers on my bed rustling. The thought just kept going through my head, “This must be what a seizure is like.”. When I came out of the seizure, I told my mom what had happened, and she took me to the hospital.  They did blood work and a CAT scan, but everything came back normal. Because no one else had witnessed it they chalked it up to a “fluke” - which they were not sure had even really happened.

Ten days later I woke up and I had another seizure. My mom witnessed this one so when we got to the hospital, they took it more seriously. They did more blood tests and another CAT Scan which both came back normal. I didn’t have a history of a brain tumor or head injury – no family history of it either - so they ordered an MRI and an EEG - both of which also came back normal. It was at this point that I was diagnoses as “Epileptic”.

The first medication they put me on, Phenytoin, worked well.  I did the normal routine for the next year:  didn’t drive, got my blood tested every three months. After a year I hadn’t had any more seizures so they started to wean me off the medication. Once I was off the medication completely I started having seizures like crazy, so I have been on medication ever since.  At one point they tried to switch me to a different medication, and that actually caused me to have more seizures. So they put me back on the Phenytoin, and I’ve been on it ever since then.  There are newer drugs on the market that don’t require you to  get your blood tested, and which are not as extreme in terms of keeping track of your levels, but I decided that since this works for me, this is what I want to stay on.

I have also discovered that I have two different types of seizures. I have grand mals - in which I pass out, and they are brought on by increased lack of REM sleep. Then I have partials - which affect my head and my right arm.  (This is how every seizure I have a starts.) Sometimes these will continue on to a grand mal, or it may just be my head and arm - and those are brought on by getting really, really stressed out.

I am very lucky in the fact that I do still have a driver’s license.  So if I don’t get enough sleep one night, I have to make sure to get more the following night so I don’t cause a grand mal. I also have to be very aware of how stressed out I am getting and where my stress levels are at. At times I have to just let go, take some time for myself, regroup, center myself and evaluate the feelings that I’m experiencing. I have to get myself back into balance so that I don’t have a partial.

I refuse to let epilepsy control my life in any way. My bosses, the people that I work with and my friends all know about my condition but I never make it the center of the conversation unless somebody asks about it. I do inform them so they are aware of the possibility so that they are not overly concerned if it was to happen in their presence. However, I don’t let it become the center of my life. If they ever want to have a dialog, have any questions, or want to talk about my situation specifically I am more than willing to share that information with them. When I was first diagnosed, a lot of people kept saying over and over how sorry they were for me. They tip toed around me. I didn’t want sympathy because it didn’t change who I was as a person, it didn’t change my personality, it didn’t change the way I thought. I liked all of the same things, I liked the same movies, I liked the same food; I was the same person. This was just like something that happened on the side and I didn’t want anybody to think that my condition changed me at all in terms of who I was or what kind of person I was. So I don’t let people feel sorry for me because I have epilepsy.   And that fact helps me to try to be a better person every day. I want to be the best person I can be, not in spite of the epilepsy, but since I do have epilepsy. I’m pushed to a higher point because I don’t want to be looked at as a weaker person. It didn’t change anything about my likes, my dislikes or my personality. I just have to do things a little differently to control my stress and being diligent about getting enough sleep. I don’t act any differently because of it. It’s just one of those things I have accepted that I have to deal with and that’s fine. We all have one thing or another and luckily, I am able to control this.

I work as a massage therapist and also as a caterer. Both jobs are slightly affected by this condition. I have found that the scent of rosemary make me feel as though I’m going to have a seizure. Although it has never brought one on, my body has the same feelings as if one were starting when I smell it. Therefore I have informed everybody at work that if they use any of the rosemary essential oils, they need to let me know so that I can keep my distance, and they are great about doing that. I do miss out on a massage from time to time if the rosemary scent is something a client requests, but I’m ok with that. If somebody wants that kind of massage, I want them to receive it – even if it’s a regular client of mine, but I’m not the one who ends up giving them that massage.  I experience the same thing with some of the recipes while catering: if rosemary is one of the ingredients, I just trade recipes with somebody else or I have somebody else add it after I have left the room and it’s no big deal. I don’t let it become a barrier in my life. It is what it is. I’m actually grateful that I have it because it has taught me so much. I have met some great people because of it, I’ve learned a lot about the human body, about the brain, and about things we need to do to help keep our lives more healthy. I love the fact that there are support groups out there and that there are new medications and drug trials. There’s new studies coming out all the time, and I make sure that I keep up with the research and keep myself informed so that I can not only help myself but also other people around me.

I’m actually very grateful that this has happened to me. As unusual as it is to develop epilepsy as an adult and even more-so that  we don’t know what caused it, I firmly believe that this happened to me for a reason. I know I will have to deal with this for the rest of my life but I love the fact that I can inform others about something that has such a stigma attached to it, and that people can see that those of us with epilepsy can live absolutely 100% normal lives. It’s just something we live with and something we deal with. Everybody has their own set of trials. I love that I can encourage others and give them hope that they too can live perfectly normal lives.  For that I am grateful to have developed epilepsy.

Seize: The Story


Seize: The Story, learning more about people with epilepsy

SALT LAKE CITY, Sunday, April 7, 2013 – Over 100,00 people in Utah will be diagnosed, or have been diagnosed with epilepsy or seizure disorder. That remarkable statistic remains just a statistic unless we get to know the individuals affected by this condition.

The Epilepsy Association of Utah has plans to do just that: Introduce you to the faces of epilepsy in Utah.

Kicking off on Monday, April 8, 2013 is our new spotlight endeavor entitled Seize: The Story.

“Epilepsy comes in many forms, both as a stand-alone disorder and in umbrella disorders such as Rett Syndrome, Angelman Syndrome, Dravet Syndrome and so many others,” explains Syndi Knowlton, Director of Syndrome Specific Disorders. She continued:” We want to recognize the accomplishments of the thousands of Utahans who succeed in life despite their epilepsy or seizure disorder.”

If you would like to share your story, or the story or someone you love, please email Syndi@epilepsyut.org

Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more.  Visit http://epilepsyut.org for additional information.
Press Contact:        Lindsey Palmer
Email:                   lindsey@epilepsyut.org
Website:                www.epilepsyut.org