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: Gwen, Cindy and Toto too!

Gwen Tilton shared her daughter’s epilepsy story and a couple of things stood out which made me feel an immediate connection to them.  First, Gwen’s daughter, Cindy, loves to bowl!  Robert loves to bowl too.  (I would like bowling a lot more if I could break 100!).  Second, Cindy loves animals which is something I (and my whole family) have in common with her (remember my Crazy Cat Lady retirement plan?). 

Best of all: Gwen had a dog named Toto.  Considering I had a dog named Wizard and have a lab named Oz, this is clearly a match made in heaven!

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

Cindy and Toto

She has many diagnoses: developmentally delayed, diabetes, epilepsy, major depression, gastropareses, osteoporosis, etc.  Cindy had several seizures before a neurologist gave us the diagnosis that she had epilepsy. She had probably been having Petit Mal seizures for some time, perhaps years before and we thought that she was just not paying attention, and staring off.  She had graduated from special education classes at Hiram Johnson High School before she began to have Grand Mal seizures.

Robert’s Sister:  Did the kids or teachers at school treat Cindy differently because she had epilepsy? 

One incident was when she was taking drivers training in the car and had a seizure, the poor instructor stuck his fingers in her mouth “to prevent her from swallowing her tongue” and of course she closed her lips and bit him.  The next day he ordered “a lab test to make sure he did not get Aids from her.” [Editor's note: I have been astounded by the amount of ignorance some school faculty members display when dealing with epilepsy. I would like to think hope to heck these people are in the minority. End of Editor's rant.] 

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

With her first diagnosis, Cindy was put on Dilantin medication and it seemed to work pretty well at controlling the seizures.  After several years her gums began to swell and bleed so the dentist suggested that we change medication. Even though the neurologist directed a slow exchange to Tegretol that took almost a year, she had many seizures making the change. She also takes Phenobarbital. Her epilepsy is under control with Tegretol and Phenobarbital medication and her last seizure was about four years ago. 

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

For several years she had dizzy spells which we could not explain but when her Phenobarbital dose was reduced the dizzy spells went away.

Diabetes is Cindy’s biggest challenge. She wears an insulin pump and must know what her blood sugar is about 6 or 8 times a day with finger sticks. She must count the number of carbohydrates she eats and let her pump calculate how much insulin to give.

It has been difficult to distinguish between a seizure and a low blood sugar reaction, if she passes out.  Of course, the treatment is different.

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

Cindy has had at least eight rides to the Emergency Room in an ambulance, because she has fallen outside.  Nowadays, everyone has a cell phone and calls for help when they see her down. Cindy hates to ride in an ambulance because on the way to the hospital they automatically start an IV and she hates that. She has made us promise not to call an ambulance when she passes out.

I smile when I think about all of the things that we have been through together. Cindy may not like what is happening to her but she has great resilience.  She bounces back from all of her incidents.  

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

Cindy comes to stay overnight with my husband Glenn and I every Sunday night.  Cindy has a special bond with animals, and never forgets their name.  They seem to take a liking to her right away also.  She particularly loved our dog, Toto, a Maltese who died in September.  I thought maybe she would not want to stay anymore but that is not true, she still is happy to come.  Toto, our Maltese dog, loved Cindy the best, even more than me.  He would choose to sit on her lap and sleep with her and growl displeasure if I tried to move him.  She brought him a squeaky toy every week when she came to our house for an overnight stay.  He started looking in her backpack for his new toy the minute she came into the house.  Our house was soon filled with 50 toys and he knew which one was the new one.

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

The biggest benefit of having epilepsy is Cindy knows that she could have a seizure if she does not take her medication so she takes all of her various pills (34) a day willingly.

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

Epilepsy is old as a disease; it is recorded in the Bible.  I am grateful that many types can be controlled by medication, including my daughter Cindy’s seizures.

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

This is a picture of Cindy and me taken this week at Special Olympics Bowling tournament in which she has competed.  She is very proud of her bronze metal and is wearing and showing it to everyone she sees.  Even though there were only three competing in her division, she is a winner.  Bowling is one of her great accomplishments.

Last year, the week before the tournament, she fell and fractured her right shoulder in three places.  She was in a lot of pain for several months and had physical therapy to regain the use of her arm.  It is rather a miracle that bones know how to grow back together in the proper form to be useful again.  Our bodies are wonderful things.

Robert’s Sister:  Please tell us about any organizations you support.

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 so someday she may be self-maintaining, not likely but a nice goal.

Robert’s Sister:  Thank you, Gwen, for sharing Cindy (and Toto) with us. Sounds like I'm due to take Robert bowling!     

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.