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Heroes of psychogenic non-epileptic seizures (PNES): Katie and Andrea Jameson

Katie and Andrea Jameson didn't plan on becoming heroes for the psychogenic non-epileptic seizures (PNES) community, but life has a way of sometimes taking you down a different road than you had planned to travel.  That is exactly what happened to these two brave people when Katie's father/Andrea's husband developed post-traumatic stress disorder and then psychogenic non-epileptic seizures (PNES).  What is most striking is how they not only stepped up to this challenge but have done so in a unique manner that is really shining a spotlight on this mostly unknown and very debilitating illness. 

How and when did psychogenic non-epileptic (PNES) come into your life? What has this experience been like for you? 

Katie: PNES came into my life when I was 10 years old.  I was sitting on the couch watching a show and talking with my mom and dad.  I looked over at my dad, because he didn't respond, and he was just sitting there shaking.  It was really scary to see.  I didn't know what was happening, so my mom explained it to me.  She explained that the brain is like a computer and a seizure is when the computer freezes up and doesn't work right, so it has to shut down and restart and it takes a while for all the programs to reload.  It kind of made sense but I was still worried.  Then he got worse.  I could tell it scared my mom too.  This experience, going through what my family has gone through, has been like an emotional roller coaster.  It is unpredictable but I've kind of gotten used to it.  I feel a little guilty when I say that, but it's true because it just happens so much.  Once we figured out what it was, it was a lot easier to deal with.

Andrea: Our introduction to PNES was probably the craziest, hardest time of my life.  I didn't know what was going on, but I knew I needed a doctor to see what was happening.  My husband had a few seizures in his sleep (he was unaware of them except for the fact I told him about them).  We scheduled to meet with a neurologist, but there was a waiting list of a few months and on Mother's Day of 2014, his seizures got a lot worse... something was different , something was definitely wrong.  My husband's eye was very droopy and had a dark circle appearing under it.  Soon his mouth also drooped and his speech was being affected.  His arm was going limp and it was spreading to his leg.  In his confused state, I struggled to get him in the car and rushed him to the emergency room.  By the time we got there, I had to help him into the building as the right half of his body was dragging along.  They rushed him in right away.  Why did I not call an ambulance??  Well, he was a Firefighter/Paramedic and men are stubborn, LOL.  Once he was admitted he began having seizure after seizure.  They pumped him full of medications and gave shots to try to break the seizures and it worked for a minute!  But then the seizure would break through, quicker and quicker each time until the shots did not affect the seizures at all and the staff stopped counting how many seizures he was having.  They did test after test and everything came back normal.  No reasons for the seizures or the stroke-like symptoms.  After quite a few days in the hospital the medications were taking their toll and my husband began hallucinating and becoming very confused and agitated at times.  Finally the doctor told me there wasn't much more they could do for him and they were going to send him home on the medications. He was still not acting like himself (my opinion was that he was overdosed on non-effective seizure medications.  The doctor kept saying it was like he was going through withdrawals of some sort, even though my husband has never done drugs or smoked anything and his blood work proved it).  I took his stuff to the car and they lost him!  He was wandering the halls trying to find me.  Then he could not even sign the discharge paperwork because he was having a seizure.  I was very nervous taking him home. Then next few weeks were crazy.  My husband's seizures continued.  So did his paralysis (Todd's Paralysis).  I had to get him walking sticks to assist him in walking because he was determined to work through it.  I couldn't leave him because he still was not thinking clearly and didn't realize what was going on.   He would fall trying to get up when he couldn't. The kids had to stay quiet because loud noises seemed to trigger more seizures.  He couldn't type emails because the stress of trying to think and type caused more seizures, but his work and insurance wouldn't allow me, his wife, to take over without documentation sent and signed by him.  Slowly he stabilized a bit (I think as all the medications worked their way out of his system) but the seizures continued multiple times a day.  I prayed every day for us to just safely make it to the neurologist appointment without having to go back into the hospital.  Finally our neurologist appointment came. The physician's assistant was kind and scheduled my husband for a 3 day EEG.  After that we were told he had psychogenic non-epileptic seizures (PNES) and there was really nothing they could do but that we should find a psychologist.  He did not have one to recommend. Sadly, to this day, we have still not found one that is familiar with PNES.

When did you start to work on PNES awareness and why?  

Katie: I started to work on PNES when I was 11 years old.  I had been doing fundraisers and different community service things for pageants I was competing in, and I thought "why don't I do something that can help my dad and also help me understand what is going on?"  It turned into something much more than I had ever planned.  People, of all ages, all across the world have messaged me and have said how much of an inspiration I have been to them.  That is now the reason I am continuing to raise awareness for PNES.  It's for the people that are struggling and feel lost or alone.  

Andrea: Thanks to pageantry, Katie has developed a love of community service.  She wanted to do some type of service event for PNES so I tried finding things she could do, but I couldn't really find anything.  It was not as easy to get involved with like it is for various cancer walks and events.  Matter of fact, it wasn't very easy to even look up "PNES".  We figured that if we were struggling to find information, that others probably were as well, so we decided to start from the beginning and just make a place where people could find out about PNES.  Everyone seems to be on Facebook® so Katie wanted to make a Facebook® page that was a simple, one-stop place people could go to learn about PNES.  We had been so lost since my husband first started having seizures and we figured others must be just as lost.  We soon found out many were even more lost than us!  I spent many days and nights researching PNES, post-traumatic stress disorder (PTSD), seizures, and strokes, anything I could find that seemed to relate to my husband's condition.  I then sat down with Katie and explained what I had found out and had her read through some of it. She came up with the name for her page -- DADS- a Daughter's Awareness for Dissociative Seizures and PNES.  She was very excited to make the name work using the letters in the word "dad" for her own dad.  On April 21, 2015 we started Katie's Facebook® page.

What projects and awareness-raising activities have you been involved in?               

Our main project has just been posting information on the Facebook® page and connecting with people.  We also made some YouTube videos to try to spread awareness.  In April of 2015 Katie started a "Suck a lemon cuz Seizures suck!" challenge  hoping it would take off like the Ice Bucket challenge, but sadly it didn't.  Next she held a fundraiser and was able to raise money to purchase and donate tons of games, crafts, X-Box games etc. to donate to our states Children's Hospital.  The donations went specifically to the Neurology Unit for children suffering from seizures.  In June of 2015 we were invited by Living Well With Epilepsy to participate in their month-long Blog Relay for Epilepsy Stigma Awareness.  I helped Katie write an article focusing on the stigmas associated with PNES and mental health. Later that November we were able to join in again and spread more awareness about PNES while looking into anxiety, PTSD and genetics.   We made flyers with information about this condition and Katie has worked hard to distribute them at many events as well as on college campuses.  She has been able to speak at local events, get PNES published in our newspaper, and appeared on local news channels multiple times spreading awareness for PNES.  When Katie won the title of Miss Utah Pre-Teen she was able to travel to the Nationals where she gave a speech about PNES and handed out business cards to people throughout the country with a scan code to link them to her DADS Facebook® page where they could learn more about PNES.  Katie was able to hold 2 other fundraisers to donate to Epilepsy Free.  In 2015 she raised and donated $100 and in 2016 she raised and donated $366.67 for PNES.

What are your plans for the future in PNES-awareness and in your personal life?

Katie: My plans for the future within the PNES community are to get doctors to finally understand that non-epileptic seizures are real.  I cannot stress how much I want people to stop saying it is fake or calling them pseudo seizures, because they are not fake.  It is cruel for people to not face the facts and look at information that we have provided to show them that they are real.  The world needs to know that these seizures are real.  For now I am continuing to compete in pageants with PNES as my platform.  I believe the crown opens doors for me to spread awareness and gain people's attention. I think I might want to become a neuropsychologist when I am older so that I can help patients get the treatment they need.

Andrea: I plan to help Katie continue spreading awareness for PNES.  People seem to be getting diagnosed more quickly than before, but they are still left feeling alone and with nowhere to turn for treatment.  One gentleman we met, was told PNES is extremely rare when he was diagnosed.  He was shocked when he met us and learned it is as common as multiple sclerosis.  I want people to be as familiar with the term PNES and they are with cancer.  My goal is to be able to get into ER trainings, college psychology classes, police and firefighter trainings, and military classes as guest speakers to teach people about PNES so they will be more understanding and able to treat patients suffering from this condition.  I believe police, fire, and military personnel may even be able to prevent PNES by dealing with the traumas they are exposed to sooner instead of bottling it up.

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