Coping Strategies for Family Members

Support Networks: As you may well know, the diagnosis of epilepsy creates many challenges for a family.  Accepting the diagnosis is the first hurdle.  Understanding epilepsy becomes the second. Then learning to live a normal life with the fear of seizures, doctor appointments, tests, school issues, sibling issues, work issues, driving issues, etc., can become an overwhelming burden.  Recognizing that this is a huge challenge to face alone and creating a support network will bring your entire family to a better place.  An effective support network will have many components and will depend on your needs.  Helpful elements may include:

• Your medical treatment team of doctors and nurses
• Extended family and friends who can help with emotional support as well as transportation and respite needs
• Local Epilepsy Foundation Affiliates who may provide all or some of the following:
  - Epilepsy information for you and to share with others
  - Service coordination/case management
  - Vocational services
  - Seizure recognition & first aid training for schools and for your workplace
  - Structured day programs
  - Independent living skills training programs
  - Counseling
  - Support groups
  - Socialization opportunities

If you have an additional diagnosis and are working with agencies outside of the epilepsy provider network, they, too, can offer programs and support.

Dealing with Seizures, Medication Side Effects & Hospital Stays: In order to effectively manage seizures and medication side effects, what is fundamentally important is that you understand your loved one’s epilepsy. It is equally important for you to understand why these medications are being taken, what that medication is, and what side effects may result. If your loved one’s doctor is suggesting a hospital stay for diagnostic reasons or for surgery, it is necessary that both of you understand every procedure and how to prepare. The treating neurologist is your first line for this information. If you need additional information, be wary of general search engine results. There are literally thousands of sites that offer explanations and advice.  Trust only a few. Misinformation can lead to mismanagement of epilepsy. 

Many have already been listed, but for general information, here are some suggested websites:

• Northeast Regional Epilepsy Group: Prepare for a Visit
http://www.epilepsygroup.com/info5-18/prepare-for-a-visit.htm

• National Epilepsy Foundation: Taking charge
http://epilepsyfoundation.org/living/wellness/takingcharge/index.cfm#takecharge

Epilepsy Advocate
www.epilepsyadvocate.com

• National Library of Medicine Drug Information Database
http://www.nlm.nih.gov/medlineplus/druginformation.html

• RX Assist: Patient medication assistance program
http://www.rxassist.org/