Legislators are back in session!

Good afternoon fellow Alliance members! I'm at the Utah state Capitol today getting a first hand look at what kind of bills are being proposed this session.  So far there hasn't been much talk about health care or services. Have you heard of anything that you are interested in? I'd be more than happy to get you all the info I can!

Also LoveUTGiveUT is coming up in March!  We were wondering if there would be any volunteers out there to walk in the St. Patricks day parade; this would help us to get our cause into the hearts and minds of Utahns!!!

Epilepsy Alliance of Utah has some fun events coming up!!!

Also soon we will be getting ready for Love/Give Utah!  Get ready followers 2014 is going to be amazing!!

Exciting news about Keppra!

There was study recently published in the January 8th issue of the medical journal Neurology; it determined that there were substantial differences in the offspring of mothers who used Keppra during pregnancy and those who were on Depakote.  As we all know Depakote is class D med that should not be used during pregnancy because it has been known to cause irreparable mental delay in the fetus.  Long term studies on Keppra's effect to fetus' growth has only recently been able to be done as Keppra became more and more prescribed.  The study followed over 100 offspring of Keppra and Depakote users for 3-4 years and found that there was a distinct difference in cognitive development and affect of the Depakote children to the Keppra group.  It found that while Keppra kids were on par with the other children in their age group the Depakote children were far behind in movement and language.  This is great news for the ladies out there who want families and have been told to either go off meds or not have children; as Keppra seems to be pretty safe in this regard!

If you would like to read a little more into it the article is
http://www.nlm.nih.gov/medlineplus/news/fullstory_143935.html

Have a great day!

To the New Year!

          I apologize for my absence this last month; while in preparation for finals and the holidays the matriarch of my family had traumatic complications from a routine surgery.  This came as a shock to a family lucky enough to not have many health concerns; I bring this up not to offer excuses or ask for sympathy but to ask the big wide web about caretakers guilt and well being.  Many of you reading this have or take care of someone with chronic health issues; these are obstacles that are quite daunting and traumatizing to the person and families they affect.  In my experience as a new "continual caretaker" (phrase I termed because its a 24 hour potion) I have felt an immense stress placed on my mind in the form of guilt for not being attentive enough, not being fast enough, and not being as supportive as I need to be. Do fellow caretakers feel the same? And can that be changed?  As the person with epilepsy how do you feel about being taken care of?  Is it demeaning to be taken care of?  And does tough love work or does it just come off tough and not loving?  I'm still trying to find the balance between what will encourage and what will dishearten my grandmother in her journey back to health.
         And yet as the end of 2013 draws near I am reminded of how insignificant the years challenges seem in retrospect.   Not to belittle some of the  trails the year has brought on, but to see them all clumped together in a yearly context, they don't seem as daunting.  And so I ask all of you who suffer form or care for someone who suffers form epilepsy to take stock in knowing that while your struggle may seem, at the time tremendous, will be but a mere blip in the grand scheme of life.   There is love and opportunity that is afforded to us all; these will be the things remembered!  Not the sick days and hospital stays but the laughs and good times spent!

A Message from Margo

              We are half way through Epilepsy Awareness month. The Epilepsy Alliance of Utah have trained in November 390 people about epilepsy and proper first aid. We have trained the following: the sheriffs and first responders in Richfield, Utah; teachers and paraeducators at the Utah Paraeducator Conference; six classes at Provo High School; and the faculty at Lakeview Academy in Saratoga Springs. Hope everyone has been sharing facts about epilepsy. Please share what you have done. The public needs to be aware that the national statistic is that almost 1 in 26 people will develop epilepsy at some point in their lives.

Remember if you have a site that needs training send your request to epilepssyalliance01@gmail.com.

Happy Epilepsy Awareness Month

November is national Epilepsy Awareness Month and to celebrate I would like to say thank you to everyone who has visited the blog!  Every view brings me so much joy at the fact that this little blog has a community out there!

Loud Music Getting to You? It might not be age related...

I came across a fantastic article about the very rare but real form of epilepsy called "audiogenic seizure disorder".  I was fascinated to know that some peoples triggers are everyday sounds; which incidentally increases their risk of multiple events throughout the day.  I asked a co-worker if she had also heard (no pun intended) of this interesting little fact and, to my surprise, she had!  She could remember a patient who had an implanted hearing aid; he would seize when it was turned to its highest setting.  Full blown tonic-clonic seizures when exposed to the high pitch of even normal speech!  I was flabbergasted by this as my time in epilepsy has not been graced with such a fascinating story.  

If you would like to find more out about this type of epilepsy I would refer you to a reputable medical information site, of course!  But if you would just like an interesting read go to http://www.vice.com/read/fear-of-music-488-v17n8 and have a look!If you'd rather not read through a whole article to get to the good stuff here is the transcribed section on audiogenic epilepsy:

Dr. Marsha Johnson, audiologist and clinical director at the Oregon Tinnitus & Hyperacusis Clinic, has treated those who suffer from melophobia, and the conditions that lead to this perplexing phobia, for 13 years. We recently spoke with her.

Are you familiar with the condition known as musicogenic epilepsy? I’m thinking of a woman who was in the news in 2008. Her name was Stacey Gayle, and she was from Queens, New York. She had seizures every time she heard the Sean Paul song “Temperature.” She had to have a brain operation to correct the problem.Yes, although I’m more familiar with the term “audiogenic seizure disorder,” which falls into the hearing category. It’s also known as vestibular hyperacusis. Certain sounds or tones, aka music, can stimulate the central nervous system in a way that provokes a brain seizure. I have seen quite a few of these cases over the years. They are often induced by a closed head injury or an illness. I recall one fellow who was in a rear-end whiplash car accident. A 2,000 Hz pure tone was presented to his left ear in a sound booth, first at zero dB, which is inaudible, and then raised slowly one dB by one dB; he went into a grand mal seizure at about 20 dB—which is a very soft sound. Another such patient, following a similar car accident, suffered complete loss of consciousness when trucks roared by, with their lower-frequency rumbles. She would fall to the ground, senseless. In that case, I suggested the neurologist conduct a resting EEG, and this showed that her brain was normal when resting in a quiet environment. When an audiometer was attached via headphones and a stimulus at 500 Hz, a low pitch, was presented, her brain EEG showed epileptic-type activity.