Winding Down Epilepsy Awareness Month

Epilepsy Awareness Month started with me thinking I was going to raise awareness for epilepsy!   I was going educate people!   I was going to put on my advocacy hat and put those skills to the test!  As the self-appointed spokesperson for my brother, I was going to let people know what it’s like to live with epilepsy!  

I had big plans.

I almost feel guilty about it (because that’s what I do) but realize I gained so much more from Epilepsy Awareness Month than I gave.  I became aware of many, many stories of others living with epilepsy or caring for someone with epilepsy.  People educated me about epilepsy.   I saw just how many other advocates there are out there but know there’s room for more!  People told me what it was like to live with epilepsy or care for a loved one with epilepsy.  I learned a few facts along the way, too, as I did my research to come up with one fact a day about epilepsy and shared them on my Robert’s Sister Facebook page , through Twitter (@robertssister1) and each week here, here, here and here.    

The last few days of the Epilepsy Awareness Month included several facts that were new to me. 

Fact 27:  Men with epilepsy have their own hormonal changes which can be caused by both the seizures and from the antiepileptic drugs.  These changes can affect mood as well as reproductive function and fertility.  (Many thanks to reader and fellow caregiver, Cindy Mitchell, for sending along articles addressing this topic)!

Fact 28:  According to the CDC, “epilepsy results in an estimated annual cost of $15.5 billion in medical costs and lost or reduced earnings and production.”  Yet another reason to increase awareness and funding for research.  (Sometimes this month I was compelled to editorialize the facts).

Fact 29:  New research (from Science Daily) indicates that people with epilepsy who used the older generation antiepileptic drugs (such as Phenobarbital, Dilantin, Tegretol, Depakote) for extended periods of time may be at increased risk of hardening of the arteries.  This information shouldn’t dissuade anyone from a treatment that is effective in treating epilepsy but this information may be useful when talking treatment options with your neurologist.  Robert has been on all of these at some point in his life (and still takes Depakote) so I’ll be talking to his neurologist about this study (I'm sure his neurologist loves me).   Of course, this is a trade-off – many times the side-effects are something people with epilepsy have to live with in order to gain seizure control.  Another reason why more research is needed.  (Obviously, I could never be an unbiased news reporter).

Fact 30:  The last fact of the month is something I’ve come to realize even more this month.  Epilepsy affects everyone in different ways and as many people as there are with epilepsy (almost 3 million in the U.S. alone), there are that many ways to live with epilepsy.  Epilepsy presents challenges (stigma, necessary treatments and their unpleasant side effects, discrimination, interruptions from the seizures) but finding support and information is possible.  Living well with epilepsy, living with hope for a cure is possible.  I’ve seen it this month with the fantastic people I’ve met and know it is true with my own brother, Robert. 

Thank you so much for joining me during Epilepsy Awareness Month.  I’ve met some extraordinary people this month who I will share with you in the coming days.  For now, let’s continue to search for a cure and better treatment and bring awareness (and more funding) to epilepsy. 

Please share what your experience has been during Epilepsy Awareness Month 2011. 

Holidays & Tradition

We love Christmas at our house.  Oh, who am I kidding?  We love all the holidays!  Any excuse to decorate the house and yard (Halloween, Christmas) or cook a big meal (with homemade pecan pie) for the entire family (Thanksgiving) or watch fireworks from the local Futon Shop parking lot (4^th of July and a blog post all its own).

Only the beginning!

We have our holiday traditions although some of them may not be for everyone (it takes a special person to want to watch fireworks from the parking lot of a furniture store).  One of our traditions at Christmas is to decorate the outside of the house  with hundreds of lights, candy canes, snowmen, blow up penguins – you name it, we probably have it and if we don’t it’s because it won’t fit in the yard.

Confession: we have so many holiday decorations that my husband gave me a birthday gift of a shed to store them all in!

I know this isn’t very “green” of me to indulge this tradition but it is fun, it brings us joy to set it all up and brings joy to people driving by our house to look at the decorations.  It even brings the electric company joy (okay, that’s my least favorite part aside from taking them all down).

Yesterday, hubby hauled all the decorations out of the shed (no small feat for someone with chronic back pain) and my daughter and I went to work setting everything up.  Once hubby recovered from the hauling, he helped hang snowflakes from the gutters.  Robert was visiting for the Thanksgiving weekend but, at first, didn’t care to sit outside to watch the transformation.  He thought it would be too cold outside; plus, he had a word search puzzle to finish.

Midway through the decorating, Daughter and I had to make a trip to Target to get more lights (hey, it was needed - this was the year many of the lights decided to not work and there were those cute snowflakes we needed more of).   When we returned, Robert joined us on the porch wearing a warm jacket and watched us blow up penguins, put together a train and install solar candy canes along the sidewalk.  We’re getting more “green” this year after all!

We were thrilled with the result after working on it all day (and we’re not even done yet – there are always more lights to hang!).  Robert looked at the finished product and proclaimed it looked “excellent” which is saying a lot, considering his usual response to anything is a very understated, “that’s nice.”

Daughter, husband and I had to agree: it was pretty excellent!

What traditions do you enjoy with your family?  Anyone else enjoy decorating to the extreme?

This Week in Epilepsy Awareness

There are only a few more days left in November, the designated Epilepsy Awareness Month, but I plan to continue increasing epilepsy awareness and supporting other individuals and organizations doing the same even after November ends.   I have learned so much while researching epilepsy and have enjoyed sharing a fact a day.

In case you missed past weekly recaps, please visit the first few facts, week two, and week three.

We’re in the home stretch now!

Fact 20:  According to the fact sheet from Epilepsy Foundation of Florida, “the leading non-medical problem confronting people with epilepsy is discrimination in education, employment and social acceptance.”  Here’s the solution:  Everyone who discriminates - knock it off!  (I thought I’d try to be a bit subtle this Sunday morning).

Fact 21:  Statistics don't lie - Epilepsy research needs better funding.

2005 National Institutes of Health Research Funding Statistics (courtesy of CURE Epilepsy): 

Alzheimer’s: 4.5 million affected; NIH research money:  $149 per person;

Epilepsy:  2.7 million affected; NIH research money:  $39 per person
Autism: 1.5 million affected; NIH research money:  $68 per person;
Parkinson’s:  1 million affected; NIH research money:  $225 per person;
Multiple Sclerosis:  350,000 affected; NIH research money:  $314 per person;

Fact 22:  Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a certain period of time, ranging from a couple of months to over a year, before they are able to obtain a license.  Other considerations such as the types of medication a person is on to control seizures are factored into the decision to grant a driver’s license.  In California, there are two types of Medical Probation.   One is for drivers who have 3 – 5 months of seizure control and the other is for those with 6 months or more seizure control.  Check the DMV in your state to get the specific rules. 

Fact 23:  What is epilepsy exactly?  First, 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.    

Fact 24: A diet related fact for Thanksgiving!  A Ketogenic diet is sometimes used to treat epilepsy in children.  This is an extremely high fat, very low carb diet and was first developed in the 1920s after it was noticed that when people with epilepsy fasted, they had fewer seizures.  This diet is generally more successful in children but a doctor should be consulted before trying it. 

Fact 25:  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).   Medicinenet.com says “Researchers believe that some people with epilepsy have an abnormally high level of excitatory neurotransmitters that increase neuronal activity, while others have an abnormally low level of inhibitory neurotransmitters that decrease neuronal activity in the brain. Either situation can result in too much neuronal activity and cause epilepsy.”

Fact 26:  Women living with epilepsy have unique issues to manage.  For instance, some antiepileptic drugs can interfere with the efficacy of oral contraceptives.  Half of women with epilepsy report increased seizures around the time of their menstruation and it’s been found that menopause and perimenopause can cause changes in seizures as well. 

Thank you for reading and I hope you learned at least one thing new about epilepsy!  Please share your experiences with epilepsy in the comment section. 

Giving Thanks

My blogging group is made up of artists, writers, entrepreneurs, retired actors, illustrators, moms, political activists, dog rescuers and computer experts – and that’s just two of them (I kid).  All have great hearts and I am fortunate to call them my friends.  Occasionally, the group comes up with a “challenge” and we write about a particular topic.  Last month, we wrote a list of random things about ourselves (and I did one for Robert as well).  Appropriately enough, this month we are writing about what we are grateful for.  For starters, I am grateful to be a part of such a diverse, passionate, kind group of individuals!

I think the rest of what I am so grateful for can be summed up in one word: “family.”  (No, the blog post is not ending now.  Have you ever known me to write a short post?).   I couldn’t ask for a better family.  Everyone always says that but I actually really do have the best family and I hope you think you have the best family too because there’s enough room for a lot of “best” families.  Why am I so grateful for my family?

1.       I’m grateful to my husband for his clever ideas.  “Leave the plastic wrap on the new sofa bed mattress that Robert is going to sleep on.”  Brilliant.  Hubby just saved us $30 for a mattress cover.  I’m also grateful that he is willing to spend the day with Robert (and have a great time, too!) so I can hang out with my daughter shopping.

2.       I’m grateful for my daughter.  Yeah, she’s 22 and we were supposed to have gone through that difficult period where mothers and daughters don’t get along but we missed it because we were laughing so much. 

3.       Even though he sometimes drives me crazy because he doesn’t pick up on the life lessons I’m trying to teach him, I am grateful for my step-son.  He chose to join the Air Force and I am thankful to him for his commitment to our country.  Now, about that money you owe me. . .  

4.       I am grateful to my step-daughter who is strong-willed and opinionated (hmm, sounds like someone I know!) but would have all of our backs if the situation called for it.  

5.       I can’t forget how thankful I am to all of our animals (of course, they are part of the family)! Years ago, my mom called our house “Noah’s Ark” because of the menagerie we had.  We still have a slew of animals and I couldn’t imagine life without any of them.

6.       I’m grateful to my Other Brother.  Other Brother and I have been close since our mom brought him home from the hospital close to five decades ago and I would climb into his crib to take care of him.  I can always count on his sound advice and good sense whenever I need it and know that no matter how busy we get with our lives, we can make each other laugh within two seconds of seeing each other.

7.       I am grateful to my in-laws, especially my mother-in-law because she became friends with my mom when Hubby and I first married and has always been a mom to me but even more so after my mom died.  I treasure her for that.

8.       I’m grateful for Robert.  We were never close growing up but in these last few years he has taught me to slow down and appreciate the little things (like a good card game and a brain that doesn’t randomly misfire).  He has also shown me how someone can be happy with nothing more than a word search puzzle, a great sense of humor and his belief in God. 

9.       I am also grateful for the friendships I have and consider these friends a part of my family.  My best friend is there for me whether I am happy, cranky or overwhelmed and knows exactly what to do in each situation (which usually involves coffee or chocolate).  I am truly grateful for my friendships with other caregivers who have enriched my life this past year.  I am forever indebted to them.

I am grateful for all of these people not just this month or just on Thanksgiving, but every day of the year. 

Thank you for indulging me this expression of gratitude.  Even though Thanksgiving is over, please grab a piece of leftover pie and share what you are thankful for.