Epilepsy Awareness Month Day 11: Driving and Epilepsy

Many people with epilepsy achieve good seizure control with medicine, surgery, diet, a medical device (such as the VNS) or some combination of any of these.  However, a third of people with epilepsy never get their seizures under control. 

'69 Chevy Chevelle: Other Brother and I learned to
drive in this kind of car which belonged to our mom.
Not your typical mom car! 

What is the impact of epilepsy on this group of people with epilepsy?

It is huge. Uncontrolled seizures affect all aspects of life: mobility, cognition, driving, employment, relationships, mental and physical health – the list is endless.

Robert has been talking this month about the impact intractable seizures (also called “refractory” or “uncontrolled”) has on his life and he is just one of many.

In the video today, Robert talks about not being able to drive. Robert has never been able to get his driver’s license since his seizures have never been controlled.  

That’s not to say he has never driven. (Apparently, our dad thought it was important to let Robert have a driving experience so allowed Robert behind the wheel at some point. Not the safest thing to do but not the most surprising thing our dad has ever done either.)

Laws about driving when a person has epilepsy vary from state to state but generally include a specific period of time the individual is seizure free and sometimes a certification from a doctor is required as well. The Epilepsy Foundation has a terrific interactive database of driving rules in each state which makes it very easy to figure out if getting a driver’s license is a possibility.

We ended the video today rather abruptly but picked up again after dinner and once Robert was in bed. Tomorrow, I will run part two in which we talk a little more about driving and also about epilepsy and employment.  

What Epilepsy Means to Me: More Epilepsy Resources and Organizations

It may not be Epilepsy Awareness Month (No! It's go-crazy-for-Christmas month!) but there were so many resources people shared, I thought it would be helpful to have them consolidated in one place.

A favorite photo from Pinterest

At the end of November we recapped the organizations and resources that were founded by some of the people interviewed throughout the month. The ones included in this list are the other resources that are important to the people who were interviewed plus a few others I found that might be useful.  

Teresa's Story. Teresa shared her story of how she was diagnosed with epilepsy and then 15 years later, watched as her mom was diagnosed with it too. Teresa supports and has found help through these organizations:

The Epilepsy Foundation of Greater Chicago;

Thresholds (Emotional/Mental Needs);
Chronic Babe (CI Support);
Rest Ministries (Christian CI Support);
Caregiving.com (Caregiver Support);

Leslie’s Story.  Leslie had an excellent recommendation during her interview.  Leslie says, “I would recommend one joins local, state, and national/international organizations, both for seizures in general, and one's type of seizures specifically. Any of these organizations can give you valuable information on how to care for and live with epilepsy, how to find the best doctor and treatment options available, and give you support.” 

 

And because Leslie really tells it like it is, she follows that guidance with, “Because believe me, you're going to need it.”

Susan and her dog, Nicky.  Susan’s story about her dog, Nicky, who had epilepsy had me searching for information about dogs and epilepsy.   A few websites stood out for me:

“Real Dogs, Real People” (they have a section on their website about canine epilepsy); 
Canine Epilepsy Network; 
Canine Epilepsy Resource Center;

Kathy Patterson and her daughter, Jenny.  Kathy tragically lost her 18 year old daughter, Jenny, to epilepsy.  At Jenny’s memorial service, Kathy and her family requested donations be sent in lieu of flowers to the Epilepsy Foundation. 

Gwen told us about her daughter, Cindy, and shared social services agencies that have been helpful to them. 

Gwen tells us a little bit about them, “Cindy’s disabilities have enabled her to be put on Social Security Income. Cindy is very fortunate to have ALTA helping to support her.  They helped her to go to job training when she graduated from high school.  They have supported her in her need to have 24/7 care at her house.  The company InAlliance supports her with trained help to deal with her health problems and work to train her to someday may be self-maintaining, not likely but a nice goal.”

To my knowledge, our family wasn’t aware of the services ALTA provides so Robert wasn’t a part of their organization until just a few years ago.  I have found them to be extremely helpful to us in finding various resources for Robert (such as his day program) and am grateful he is now involved.

Helen of Manchester (I love having a friend in England!), supports Scope.  Helen said in her interview, “I've been a member of Scope for a long time. This organization is a charity based organization. They helped me over the years with holidays, day trips. I've given back on some occasions by collecting money for their charity.” 

The list will grow as more people tell their story about epilepsy or caregiving.

I am planning to run more interviews throughout the year so if you’re interested in telling your own story about epilepsy or caregiving (or know someone who wants to tell their story), please contact me at robertssister@att.net. 

The more we share, the more we help each other!

What Epilepsy Means to Me: Epilepsy Facts

It’s hard to believe Epilepsy Awareness Month is almost over.  I am so grateful to everyone who agreed to be interviewed this month about epilepsy and sharing so much of their lives with such candor and openness. 

I’d like to share some facts about epilepsy today and tomorrow I will share some epilepsy resources that I hope are helpful.

First the facts, Ma’am:

•             Almost 3 million people living in the United States and 65 million worldwide live with epilepsy. Source:  Epilepsy Foundation

•             500 new cases of epilepsy are diagnosed in the United States every day.  Source:  CURE: Citizens United for Research in Epilepsy

•             Epilepsy is the 4th most common neurological disorder behind migraine, Alzheimer’s Disease and Stroke.  Source: Epilepsy Foundation

•             Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!) Source: CURE: Citizens United for Research in Epilepsy

•             It is a MYTH that a person can swallow their tongue during a seizure.   Nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head.  Source: Epilepsy Foundation

•             Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.  Source:  CURE: Citizens United for Research in Epilepsy

•             Epilepsy can develop at any age and can be a result of genetics, stroke, head injury and many other factors.  Source: Epilepsy Foundation

•             One study suggests 68% of people with poorly controlled epilepsy do not have personal friends.  Personal friendships help develop good self-esteem which reduces depression.   Source: Epilepsy Foundation

•             Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Source: The Epilepsy Therapy Project

•             In over 40% percent of patients, seizures can’t be controlled with treatment which can lead to brain damage and death.  Source: Cure: Citizens United for Research in Epilepsy

•             In almost 70% of cases of epilepsy, no cause can be found.  So many conditions can cause epilepsy or are related to epilepsy that it’s difficult to track down the exact cause.  It can be caused by an abnormality in brain wiring, imbalance of brain chemistry, injury, poisoning, brain tumor, stroke, Alzheimer’s, cerebral palsy, or any combination of these (just to name a few).   Source: Epilepsy Foundation

•             Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  Download a seizure diary at www.epilepsy.com.

If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.netand I’ll be happy to share your story at any time. After all, Epilepsy Awareness Month actually never ends! 
 
Tomorrow I will share epilepsy resources with you to finish this month of Epilepsy Awareness. 

Then, I’m going to say hi to my husband, pet my animals and go take a nap. 

What Epilepsy Means to Me: Kathy Patterson and her daughter, Jenny

Here it is mid-month and I have to say I am absolutely amazed at the courage and perseverance shown by each and every one of the people interviewed this month. 

I also have to apologize.  When I was creating my interview questions, I debated about asking, “Do you wish your loved one didn’t have epilepsy?” because I didn’t want to sound like one of those  idiotic newscasters who asks, “How does it feel to have your house burn down?” 

DUH!  HOW DO YOU THINK IT FEELS??

I chose to keep the question and have been surprised at the variety of ways people answer the question so was happy to have left it in.

Until now.  Our interview today is with Kathy Patterson who lost her 18 year old daughter, Jenny, to epilepsy in 1994.  I really wish I had deleted that question for Kathy but I didn’t and now I feel awful about it. My heart goes out to Kathy for losing her daughter and I can only hope my question (or any of them for that matter) didn’t make this interview more painful for her. 

Kathy was gracious enough to answer my questions and talk about her daughter and I am grateful to be able to learn about her Jenny. 

But I think we can all agree that I should definitely NOT be a newscaster . . .

Robert’s Sister:  When was your loved one first diagnosed?  Tell us about the process of getting the diagnosis. 

Jenny - What a radiant smile!

Jenny was first diagnosed when she was 12.  She was at her first appointment with the orthodontist and dozing off in the chair.  She got up to go to the bathroom and rinse her mouth when the staff heard a great commotion.  They knocked on the door, and when she didn’t answer, they went in to find her on the floor and not really aware of anything.  She didn’t remember what happened.   They thought maybe she had slipped and fell since the floor was wet, but the sink was dry so they didn’t know where the wet floor came from.  (As it turned out, the wet floor came from her… it’s common to lose your bladder when you have a seizure).  We took her to her pediatrician who suspected epilepsy and referred us to a neurosurgeon.  He did an EEG and tried to do a cat scan, but she had another seizure on the table, which pretty much confirmed the diagnosis.   

Robert’s Sister:  How did you feel when Jenny was first diagnosed with epilepsy?

We were shocked.  We read everything available and tried to figure out where this came from.  It’s unclear if genetics plays a part, but both her father’s uncle, and my paternal grandfather both had epilepsy.  We figured we’d all take it in stride and do what needed to be done to lessen the consequences of the disease.  As it turned out, her seizures were caused by noise during the twilight of waking up or falling asleep.  Her doctor called it “nocturnal epilepsy.”  She never had a seizure when she was wide awake.  We had to make adjustments – turn off her alarm clock, the ringer on her phone, and the answering machine.  We had to wake her very gently in the morning. 

Robert’s Sister:  Did your family treat Jenny differently after the diagnosis?  If so, how?  

Jenny was the only child left at home; her two step-siblings were grown and gone.  We were determined to have her continue to lead a normal life and since she was fine when she was awake, we figured it would be relatively easy.  She was quite athletic and there was no reason for any of her sports to stop.  The only thing she could not do was scuba dive.  Her step-dad was a scuba instructor and she wanted to learn.  We could not allow that.  A seizure underwater was a death sentence – kind of ironic; in retrospect, we probably should have let her try.

Robert’s Sister:  Did the kids at school treat Jenny differently because they had epilepsy? 

Not really.  Her friends were interested to know what to do if she had a seizure when they were around.   As it happened, shortly after she was diagnosed some of them were at our house just lazing around and Jenny had a seizure.  They were compassionate and cared and wanted to do something, but as you know, there is nothing to do.  The seizure has to run its course.  Jen would get horrible headaches after a seizure, so there were times she had to stay home from school.  We made her wear a medical bracelet and a friend asked her what the bracelet was for because he also wore one.  He was also epileptic, made a comment about ‘shaking,’ which made her laugh.  She immediately felt less self-conscious, although the bracelet was soon taken off and not worn again. 

Robert’s Sister:  What treatments did Jenny try?   What worked?  What didn’t work? 

The only medication she took was Phenobarbital, although the dosage had to be monitored and adjusted as she got older.  She hated having to take it.  She had always been very bright, never needed to study much and always got very good grades.  Suddenly her concentration was not what it used to be and she had to work to get the good grades.  The Phenobarbital worked, though, and she had much fewer seizures. 

Robert’s Sister:  Do you think the medications affected how Jenny felt?

She died because she stopped taking her meds.  She took a smaller dosage in the morning than she did at night, but it still affected her concentration.  She was in her first year of college and wanted to do well.  She had gone several months without a grand mal, so she figured she didn’t need the meds.  The final seizure caused so much adrenaline in her that it stopped her heart.  She had spent the night at a friend’s house and her friend did not know CPR.  The EMT’s were unable to revive her. 

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

We have not. 

Robert’s Sister:   How has epilepsy affected your life?

Epilepsy took our daughter away from us.  It has taken years to accept that.  However, our faith has helped us create a “new normal” without her.  We know that she touched people in a special way and that is very comforting.   Our house had always been the gathering place for her friends.  We thought we knew all the kids she hung with.  During her memorial service, the Monsignor asked if anyone would like to speak about her.  A young man from her high school who we had never seen before got up to speak.  He talked about how Jenny had probably saved him from a bad life of drugs and alcohol.  She was a true friend of his because she cared enough to tell him the truth.  To this day we don’t know who he was, but I pray he’s remembering her and still doing well. 

Robert’s Sister:  What is your favorite memory of Jenny? 

Her entire life is my favorite memory. She never went through the “I hate my parents” stage.  She had a great sense of humor and was fun to be around.  She would cry at the movies then be embarrassed because of it.  She was tall and very thin, but could out-eat her football player boyfriend – and not be embarrassed about that!  She had very keen insight about people.  She was an observer… she would sit back and take everything in, then when she had something to say, it was usually profound.  Even at a young age not much got past her.  When she was around 7, we were having a good discussion about something while we were eating dinner.  I was trying to word my next sentence carefully so I slowly said, “it scares me to think…” when Jenny chimed in, “it scares us when you think, too, mom!”  That was the end of the serious discussion.

Robert’s Sister:  Do you ever wish Jenny didn’t have epilepsy?

Of course. 

Robert’s Sister:  What do you want people to know about epilepsy?

That they should never, ever stop taking their meds.  Epilepsy is not curable (at least not now).  Medication helps control it.  They have to take it seriously.

Robert’s Sister:  Is there anything else you want to say?

She once told us that when she was having a seizure she felt like she was drowning – she had a feeling of being underwater.  That would cause her to gasp for breath; occasionally she would stop breathing.  During her seizures, her dad would gently call her name; she could hear him, but couldn’t respond.  It was comforting to her to hear his voice and in her words it would “call her back.” 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business. 

In lieu of flowers at her memorial, we requested donations to the Epilepsy Foundation. 

Robert’s Sister:  Thank you, Kathy, for your courage in sharing Jenny with us.  By sharing Jenny’s story, she will continue to affect more people than you know.

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.      

Epilepsy Facts and Resources

In support of the first annual Talk About It Epilepsy weekend, I’d like to share as many epilepsy facts and resources as possible.  This information can also be found as a downloadable document on the right side of this post. 

Epilepsy affects one in 26 people in their lifetime so chances are this flyer will come in handy for either you or someone you love or know. 

What is epilepsy exactly? 

·         Epilepsy is a disorder; not a disease.  A seizure can be described as an electrical storm in the brain.  Normal brain function limits the spread of electrical activity but a seizure happens when this breaks down and allows this electrical storm to spread in the brain.  A person is thought to have epilepsy when they have had at least two seizures.    Source: Multiple

·         Almost 3 million people living in the United States and 50 million worldwide live with epilepsy. Source:  Epilepsy Foundation

·         500 new cases of epilepsy are diagnosed in the United States every day.  Source:  CURE: Citizens United for Research in Epilepsy

·         Epilepsy is the 3rd most common neurological disorder behind Alzheimer’s Disease and Stroke.  Source: Epilepsy Foundation

·         Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  (Yes, COMBINED!) Source: CURE: Citizens United for Research in Epilepsy

·         It is a MYTH that a person can swallow their tongue during a seizure.   Nothing should be placed in a person’s mouth during a seizure.  The best way to help a person having a seizure (if they are lying down) is to help keep them safe.  If possible, roll them over to their side and place something soft under their head.  Source: Epilepsy Foundation

·         Epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.  Source:  Centers for Disease Control & Prevention

·         Epilepsy can develop at any age and can be a result of genetics, stroke, head injury and many other factors.  Source: Epilepsy Foundation

·         One study suggests 68% of people with poorly controlled epilepsy do not have personal friends.  Personal friendships help develop good self-esteem which reduces depression.   Source: Epilepsy Foundation

·         Mood disorders are related to epilepsy and can be a side effect of either the seizures or the anti-seizure medication.  Source: The Epilepsy Therapy Project

·         In over 30% percent of patients, seizures can’t be controlled with treatment which can lead to brain damage and death.  Source: Cure: Citizens United for Research in Epilepsy

·         In almost 75% of cases of epilepsy, no cause can be found.  So many conditions can cause epilepsy or are related to epilepsy that it’s difficult to track down the exact cause.  It can be caused by an abnormality in brain wiring, imbalance of brain chemistry, injury, poisoning, brain tumor, stroke, Alzheimer’s, cerebral palsy, or any combination of these (just to name a few).   Source: Epilepsy Foundation

·         Keeping a seizure diary can help someone with epilepsy and their neurologist figure out possible seizure triggers and what medications are or aren’t working.  Download a seizure diary at www.epilepsy.com

EPILEPSY RESOURCES
 

The Epilepsy Foundation.   The Epilepsy Foundation is a great place to start in the search for information about epilepsy.  Their website includes information about epilepsy, seizures, research and much more.  The Epilepsy Foundation website has support communities for both those living with epilepsy and those caring for someone with epilepsy as well as information for educators and advocates. 

Epilepsy Therapy Project.  Another excellent resource!  Their mission is “to inform and empower patients and families facing newly diagnosed epilepsy or those struggling with epilepsy that has resisted treatment.”  They have information on innovative treatments and research as well as an online support group. 

Talk About It Organization.  Greg Grunberg  (he starred in the TV show Heroes) started the Talk About It Organization because his son has epilepsy.  In an introduction on the website, Greg proudly calls his son his hero.  This terrific website has many people you will likely recognize talking about epilepsy and different aspects of it, including first aid for seizures, employment, how to discuss epilepsy in your family as well as important information about epilepsy medication.  

CURE: Citizens United forResearch in Epilepsy.  Susan Axelrod (whose husband, David Axelrod, was a senior advisor to President Obama) started the CURE Epilepsy organization because their daughter has epilepsy.  This organization does a fantastic job spreading awareness and education and raising money for epilepsy research. 

National Association of Epilepsy Centers.  If researching treatment centers or epilepsy specialists, the National Association of Epilepsy Centers can help with the search.    

PAWS With a Cause.   I can’t leave out my “pet” organization!  PAWS With a Cause provides Service Dogs trained to deal with seizures as well as other medical conditions.

Purple DayOrganization.  Who doesn’t love purple?  According to their website, “Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy's goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy's idea which is now known as the Purple Day for epilepsy campaign.”

Many of these organizations also have their own Facebook pages providing additional information and most can also be found on Twitter.  Both provide wonderful opportunities to connect with others in a similar situation. These real connections will help combat that pesky troublemaker, isolation. 

Let’s Talk About It!