Tuesday, December 11, 2012

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:

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!

1 comment:

Kaye Swain-SandwichINK for the Sandwich Generation said...

Hi, I popped over for the Blog Party and enjoyed reading this article and the next one. Thanks for the great links. I'm planning on linking to this post at SandwichINK on Monday as I'm sure your links will be a blessing to many multigenerational caregivers as well. Thank you.