What Epilepsy Means to Me: Epilepsy Resources and Organizations

Today is the last day of Epilepsy Awareness Month – the “official” Awareness Month, I mean. 

As anyone who is familiar with epilepsy knows, there’s also the “unofficial” eleven other months we spread awareness, advocate, and take care of seizure and medication challenges. 

Through the interviews this month, I learned so much about not only epilepsy but about the resilience and spirit of people. About overcoming obstacles and not giving up.  About dealing with unthinkable loss and doing so much for others anyway.  About wanting to become involved because of the passion for this cause.

About just wanting to be heard.   

Robert is the reason I'm passionate about
epilepsy awareness and education

Some people shared with me they had never told their story of epilepsy before.  One mom told me her friends and family have a better understanding of her situation now. 

Several months ago, I wrote about a few epilepsy resources who I found to have great information as well as strong advocacy efforts.  This month, I have learned of so many more!  Included in this additional list are the organizations and websites of those who were interviewed. 

Many of those interviewed also recommended websites they are passionate about and I will cover those in a future post. 

Christy Shake: Calvin’s Story.  My favorite quote from Christy was, “I want to kick epilepsy’s ass.”  That’s all you need to know about Christy.  That and she’s smart, a terrific writer and a tireless advocate for her son.  She writes one blog post a day at Calvin’s Story and partners with CURE: Citizens United for Research in Epilepsy to raise funds for a cure here.    

Linda and her son, Jason.  Linda and I have shared many stories since we’ve met because her Jason and my brother, Robert, are so similar.  Linda is a devoted mom and also does fundraising for CURE Epilepsy in Jason’s name here.

Susan Noble, Epilepsy Warriors Foundation.  Susan said in her interview, “As President and Founder of the Epilepsy Warriors I am striving to reach as many people within the local communities to help educate and bring an end to the stigma of epilepsy.”  She’s a warrior herself so I have no doubt she will succeed! 

Michelle Reichartz and Alex DeYoung, Calm the Storm Within.  These two best friends found a shared passion: epilepsy.  Michelle shares in her interview, “All I've ever wanted was to understand what's happening to me and that's what CTSW is all about for me. No matter what, I just want to understand how epilepsy works so hopefully we can begin to better manufacture ways to control the cause.”  Michelle and Alex have set a goal for their Facebook page likes in November so, please take a minute to “like” their page.

Gina Restivo, Fly Danny, Fly.  Gina has become a passionate advocate for epilepsy research and made a terrific point in her interview, “when it comes to actual funding for research, there needs to be a public outcry from more than those suffering with Epilepsy and the foundations supporting them.”  She is so right!  Everyone – affected or not – needs to be involved in finding the cure.  A portion of the proceeds from the sale of Gina’s book goes toward the Danny Did Foundation. 

Julie Hutchison, the Chelsea Hutchison Foundation.  Julie and her husband founded an organization in Chelsea’s name after suffering the unbearable loss of their daughter.  They have helped many, many people with epilepsy and their families through their organization.  Julie reminds us in her interview, “Be your own advocate!  Know that seizures can be more than a little inconvenience and don't let any doctor treat you as though you are being overly protective.” 

Mandy Krzywonski, My Life as Mandy . . . with Epilepsy.  For someone who is only 19 years old, Mandy has accomplished an awful lot!  She runs a popular blog, donates care baskets to children in the hospital and runs several support groups on Facebook.  She’s got something for everyone!

Connor Doran, Dare to Dream.  Another successful young adult!  (Boy, I better get with it!).  Connor has been a Top 12 finalist on America’s Got Talent with his Indoor Kite Flying act. He performs all over and is a role model and inspiration for many with epilepsy (and many without!). 

Many of these organizations also have their own Facebook pages providing additional information and many can also be found on Twitter.  I encourage you to “like” their pages or follow them on Twitter.

The interviews are over (for now) but if you’re interested in telling your own story about epilepsy or know someone who wants to tell their story, please contact me at robertssister@att.net.  I plan to share the stories for as long as people want to tell them!

Thank you all for your support during Epilepsy Awareness Month!  Reading the interviews, posting comments, indicating “likes” and “shares” on Facebook and RTs all meant the world to me.  (Especially the RTs since I’m a Twitter addict). 

So what’s in store for December?  Should we have a new interview every day about the holidays?  (That’s my husband you hear screaming in the background.)

They may not be every day but there will be more posts about epilepsy, advocacy, the working caregiver and, of course, Robert!  Maybe one or two about the holidays . . .

 

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: Mary and her Old English Sheepdog, Morgan

When I was a little girl, I wanted an Old English Sheepdog.  I loved their fluffiness and the idea of them trudging through the snow to save people.

(I obviously got them mixed up with St. Bernard’s).

We didn’t ever get an Old English Sheepdog but had other dogs (a crazy poodle and then a lovable Samoyed).

Animals touch our hearts in such permanent ways (even my crazy poodle) and the person we are interviewing today is no different.   Mary C. Russell shares what it was like caregiving for Morgan, the Old English Sheepdog who had epilepsy. 

Mary rented a room in a house in the late 1980s through the early 1990s and shared the house with the owner, four dogs and two cats. Morgan was one of those four dogs.

During the interviews this month, I’ve offered to let people use their own questions if it made it easier to tell their epilepsy story.  Mary has done just that and I am grateful to her for telling her story and for caring for Morgan.

Q:   Did Morgan already have epilepsy when you first moved into the house?

Mary C. Russell

Mary:   Yes.  At one time I was told that Old English Sheepdogs were the most abandoned dog.  I'm not sure if that's in the United States or in the world.  They are prone to epilepsy.  If they're going to get it, they get it when they're three.  Pretty much the day Morgan turned three, she had a seizure.

I think they tried her first on Dilantin and then it was Phenobarbitol by the time I was there.  Before the pills, Morgan had seizures several times a day.  On the pills, she had a seizure about once every three weeks.

I heard that she had been a happy, frisky, big dog before the pills, but then she became slow and logy, the opposite of energetic.

Q:  How did you feel when you saw that?

Mary:  I had never seen her when she was frisky.  I was sad to hear that she wasn't like that anymore. 

Q:  Were you Morgan's main caregiver?

Mary:    Not at first.  Morgan's owner was also the owner of the house and we both took care of her.  I fed Morgan her pills some of the time, three tiny pills twice a day.  Sometimes I would find some of them behind a couch.  She would get it into her cheeks and one would think the pill went down.  But it went behind the couch.

I was the main pooper scooper for the dogs.  I probably turned into being the main pill giver.

Q:  How long were you with Morgan?

Mary:    Six or seven years.

Q:  Did you have to clean up after her seizures?

Mary:    Yes.  Morgan would let go of solids, liquid, and drool.  We used a hand wet-vac to clean some of it out of the rug, and then the wet-vac had to be cleaned out.  I did some of that.  Sometimes when the rug was down to damp, we used vinegar as a disinfectant and deodorizer. 

After Morgan died, my landlady changed out the rug and the rug backing.  Liquid had gone through both layers and had soaked into the flooring.  You could see black marks on the wood.  My landlady got the floor sanded and polished, pretty much back to factory issue.

Q:  What was life with Morgan like between seizures?

Mary:    She didn't do much.  She mostly just slept.  She and the other dogs barked at passing cars and people.  Sometimes they would switch windows to follow the passersby going around the corners of the house.  I don't know if Morgan had much muscle strength, because she didn't get exercise.   After a seizure, she would bump around as though she couldn't see.  If that meant she got in the way of things, you could push her and she would bump somewhere else.  That could mean she ended up in a corner.  Nobody was around to push her away from that. 

She'd stand with her head against the wall for a few minutes and sleep afterwards.  It was moving and gushing and walking and bumping and standing in a corner, then sleeping half an hour or so.  If she slept on a wet spot, you didn't clean it during that time unless you could pull her off.  A large dog like that, you'd just have to cantilever your body at an angle, or maybe get another person to help you move her.

Q:  What was Morgan's relationship with the other three dogs and the two cats? 

Mary:    They got along.  Once Morgan stuck her nose too close to one of the cats and got a back-off swipe.  I never saw any torn flesh there.  But the cat never had trouble with the dog again.

Q:  How did the other animals act during a seizure?

Mary:    I didn't see other animals in Morgan's vicinity while she was having a seizure.  That would tend to imply they backed off.  Maybe the smells were a bit much for them, or they didn't want the wetness.  And Morgan made strange sounds.

Q:  Did they avoid her the rest of the time?

Mary:    No, not at all.  They just ambled around the house. 

Morgan paid attention when it was mealtime.  She didn't make herself scarce then.  For a while my landlady ran a dog-sitting business.  I think Morgan was around during part of that time.  She was amiable about having other people in her sphere. 

Sometimes Morgan would stand on my foot while I did the dishes or prepared food for the other animals.  She was interested in that food smell, so I guess the drugs didn't dampen her appetite or nose too much.  She wasn't trained about personal spaces.  Sometimes I shoved her off.  She weighed about 90 pounds, so if she stepped on you, you noticed.  Sometimes I felt sorry for her and didn't bump her away.

Q:  What was your attachment to Morgan like compared to the other animals?

Mary:    Combing took a lot of time and effort.  Sometimes I combed one of the cats, who was Persian and temperamental, but I combed Morgan more.  Her hair smelled.  Some of the smell may have been because she hadn't been shampooed, but Morgan also lay down in her moisture after a seizure.  I washed my hands every time after I combed her.  Sometimes the volume of the hair that I removed got to be about a quarter of the size of Morgan.  It was good upper body exercise.

Q:  Did you have any particular feelings concerned with taking care of Morgan?

Mary:    At least picking up poop, I was out in the yard and surrounded by trees.   Morgan liked going in the back yard if she could find shade near the wood fence.  She could even get to a cooler space by digging up the grass a bit and getting to the loam.  She was part of why the back yard was destroyed, for her getting to the cool dirt.

Also, Morgan would eat worms.  It might be that she wasn't just going for the cool dirt.  Maybe it was more interesting to sometimes eat worms, rather than just kibbles and table scraps.

Q:  Did she see the vet more often than the other animals did?

Mary:    No.  She just had the pills twice a day and a seizure about every three weeks.  I think my landlady noticed Morgan's distress when the hair built up.

Q:  Was Morgan licking the hair off and was that upsetting her stomach?

Mary:    I think it had to do more with heat.  I tried to comb her every week and I was also a student at the time, so there was not always an activity schedule match.

Thanks to Morgan, I felt quite at ease dealing with the seizure of one of the special needs people when I was driving them in a van, to and from their training center.

Q:   What was that like?

Mary:    Startling.  I didn't see the seizure as it was going on.  The man was slumped in his seat, still mildly seizing.  The other riders noticed it and told me.  I was driving down a pretty wide street in the middle of winter.  I pulled to the side, took off my coat, and laid it on the grass on the road verge.   I don't think it was very snowy. 

With help from others I maneuvered my passenger out of the van and onto the coat.  He finished having his seizure and maybe lay there for a few minutes, but then he was able to get up.  I asked him if he needed to change his clothes.  He said no.  His general activity level was no different from that of other people in the van.

Robert’s Sister:  Many thanks to Mary for telling us about Morgan. It sounds like Morgan helped spread epilepsy awareness and prepared Mary when her client had a seizure. 

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Tomorrow and Friday I will be sharing epilepsy facts to close out Epilepsy Awareness Month.   If you’re interested in telling your own story about epilepsy, you can still contact me at robertssister@att.net and I’ll be happy to share your story at any time.  After all, Epilepsy Awareness Month actually never ends!  

 

What Epilepsy Means to Me: Carol and her sister, Martha

Carol Kreis has been on both ends of caregiving.  She cared for her mom and her sister, Martha.  She also needed some care herself when she suffered a stroke and had a litany of heart and lung problems the past couple of years (we’re on an upswing with her health, though!).

She’s also my delightful mother-in-law or, as I think of her, my “bonus” mom.

Carol has always had a special connection with Robert which I never fully appreciated until this past weekend.  At our Thanksgiving gathering, after we had polished off the mashed potatoes, stuffing and cranberries (and Robert was dreaming of Rocky Road Ice Cream), we relaxed, chatted and watched football.

(And some of us planned our Black Friday shopping.)

Because of her connection with Robert, I asked Carol if she would be interested in being interviewed about epilepsy. 

“You haven’t known anyone besides Robert with epilepsy, have you Carol?”

“Oh, no!  No, I haven’t.”  Pause.  “Well, except Martha.”

“Martha?  As in, your sister?”

From the expressions on people’s faces, I don’t think anyone in the room knew Martha had epilepsy.  I certainly didn’t remember knowing that about one of Carol’s sisters.  Hearing new stories and hanging out with family after a fantastic meal (if I do say so myself), are what I love about Thanksgiving. 

Well, that and those darn pies!

It was so wonderful hearing Carol talk about her sister because it was clear how much she loved her and how much she misses her.  I loved getting to know more about Martha and her experience with epilepsy.

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

Martha was first diagnosed about five or six years before she died, at about 55 years old.  She was having Petit Mal seizures and had a couple of those and I don’t think she was telling the doctor about it.  Then she had a car accident and it scared her to death because  the grandkids were in the car. They were blessed that no one was hurt but she kept saying “I could have killed them.”  She finally faced it and admitted she had a problem. It was hard to do because she knew it meant she was going to lose her license. 

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

I was just glad she finally had been diagnosed but felt so bad for her because she was a very independent person.  To have to lose her license was making her lose her independence. I was glad she was diagnosed, though, because then it helped everyone deal with it.

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

Martha also had a lot of problems with diabetes and she wasn’t good about caring for herself as far as that went. Everyone was worried about the diabetes and then more because of the seizures. It was like a double whammy.  She wasn’t one to do what the doctor wanted her to do which made a lot of stress on the family. 

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

Martha was on medication which helped decrease the number of seizures but they weren’t eliminated completely.  She never had the Grand Mal seizures but she had fewer seizures on the meds.  The family feared she would escalate into Grand Mal seizures, not being educated about epilepsy.  We thought it would steadily get worse until we talked to the doctor about it.

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

She slept more but she always slept a lot anyway.  I don’t think it changed her very much.

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

My main thing was if she had it, can someone else get it in the family?  The doctor assured us it wouldn’t run in families like I thought.

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

There’s so many of them.  One of my favorites is when Martha and I dressed up as Mr. and Mrs. Santa Claus and no one knew we were doing it. We snuck out of a family gathering and changed and came in the back door.  Everyone in the family was surprised.  We still had little ones then and we had so much fun getting ready to do it which dragged out two weeks before Christmas. We were like little kids. She was Santa and I was Mrs. Claus. 

There are a lot of great memories from when we were kids.  Another great memory is when we went to Marine World and took a picture like we were riding on a whale and the whole day was so much fun! It was just me and Martha and it was such a nice, nice day.  

Robert’s Sister:  Did you ever wish Martha didn’t have epilepsy?

Sure.  It took so much away from her since she was so independent.  It did change her personality, though, because she became so much more dependent on other people.

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

If you know someone who has it or even someone that you don’t know and they have a seizure, don’t be afraid of it.  Most people are afraid because they don’t understand it and you just have to realize that it’s just the brain doing a little jig for a minute. You just have to let it dance and know it’s not going to hurt you.  And nine times out of ten it won’t hurt the person having the seizure either.  Try to be as supportive as you can.  Don’t panic, just be compassionate.

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

I loved Martha a lot and having the epilepsy taught me to be more compassionate and more thankful.  I just wish one day epilepsy would be a thing of the past like Polio.   

Robert’s Sister:  Many thanks to Carol for answering my questions!  It’s obvious you loved Martha very much and took good care of her, no matter her diagnosis.

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.