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: Helen of Manchester

According to a September 2011 report by the Joint Epilepsy Council in the United Kingdom, "approximately 600,000 people in the UK have a diagnosis of epilepsy and take anti-epileptic drugs."

Helen Grice is one of them.

I met Helen through Twitter (you know how much I love Twitter!).  Twitter is such a great tool for connecting with others who share a common interest or cause. Whether it’s #puppies, #inspirationalquotes or #health related (such as #caregiving and #epilepsy), it is an easy way to find others with a similar passion and a terrific way to share information.

(Sheesh, Twitter needs to pay me for all the good PR I give them!)

Helen has been a great supporter of Robert’s Sister and is always a delight to talk to. I’m happy to share my Twitter connection with you!

Robert’s Sister:  When were you first diagnosed with epilepsy?   Was it a lengthy process to get diagnosed?

Helen Grice of Manchester

According to my mom she told me I was diagnosed at the age of 3 years old. I had a series of seizures and my dad took me to the doctors who then referred me to a specialist.  It took a year to be diagnosed.

Robert’s Sister:  How did you feel when you were diagnosed?

I can't really remember how I felt when I was diagnosed as I was too young.

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

My mom tells me that she and my father let me get on with things and lead a normal life as possible.

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

Not as a young kid but as I grew older, when I was 10 I had to wear a caliper to straighten my foot out. I also have slight Cerebral Palsy down one side. I was called "Spastic" – the kids were nasty. As a teen growing up I also attended a special school so on the way home I was also bullied. Not a very good time in my life.

Robert’s Sister:  What treatments have you tried?   What has worked?  What hasn’t worked? 

My mom tells me, I had Epilim liquid as a young child and as a teen and upwards I've been taking and still taking Carbamazepine Retard. The dosage over the years has increased. About 10 years ago there was talk of changing my medication but nothing came of it.

Robert’s Sister:  Do you think the medications affect how you feel?

The medication I'm taking now makes me tired and my balance isn't the best but most days I manage on the medication and lead a normal life.

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

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. 

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

It's not really affected my life. I think when I was younger it did a little due to the bullying but I've lived a pretty normal life.

Robert’s Sister:  What is your favorite memory? 

I think one of my favorite memories was flying to the States on my own. Being able to achieve something like that made me realize I could probably do whatever my heart desires.

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

There were times where I wish I didn't.  I have off days where I'm really tired and can't be bothered with anything but the next day I just carry on as I normally do.

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

I want people to know that people with epilepsy are just as normal as the next person, they just have a condition that they sometimes can't control.  It can be scary when someone has a seizure, sure, but we're not freaks. We're just normal like anyone else.

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

I think there should be more education out there to others. Someone might even save someone's life if they knew what to do. I also think the government should do more for people with epilepsy and not take away their rights.

Robert’s Sister:  Many thanks to Helen for answering my questions!  If you’d like to connect with Helen on Twitter, you can find her using @DDubsLoveBug.

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.