Webinar Presenters. Joanne Bowsman Director of Development Epilepsy Foundation of Florida

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2 Webinar Presenters Joanne Bowsman Director of Development Epilepsy Foundation of Florida Judith Siskind, Ph.D. Staff Psychologist Epilepsy Foundation of Florida

3 Epilepsy Foundation of Florida The Epilepsy Foundation of Florida (EFOF) was established in 1971 as a not-for-profit 501 (c)(3), and serves as the lead advocate and premier source of information for people with epilepsy in Florida. The EFOF provides numerous services to individuals and their families, regardless of financial situation, including: advocacy and counseling, education and prevention, medical and neuropsychological services, referral and support, and much more.

4 Webinar Overview Epilepsy and its psychological aspects, on a continuum Minimal problems..seizure Severity and Control, AED side effects.. Severe problems Minimal problems.anxiety, Severity and Frequency.Severe problems Minimal problems.depression, Severity and Duration...Severe problems Minimal problems Memory (also Attention and Concentration)..Severe problems Minimal problems Social interactions, social and emotional support.....severe problems Minimal problems Employment (finding, retaining) and Financial Security.... Severe problems Minimal problems..sense of personal identity, quality of life.severe problems

5 PART I: EPILEPSY & MENTAL HEALTH CHALLENGES

6 Part I: Epilepsy & Mental Health Challenges ANXIETY: a very common experience for those with epilepsy. Learned fear from seizure experience (injury, embarrassment, loss of control) Fear of the stigma associated with epilepsy (often a learned fear from the ignorant reactions of others) Fear of loss of job (issue of whether and when to disclose epilepsy to employers) Fear of loss of romantic relationship and friendships (disclosure issues)

7 Part I: Epilepsy & Mental Health Challenges (continued) ANXIETY: a very common experience for those with epilepsy. Fear of being unable to achieve educational and career goals because of seizures and related cognitive problems The need to avoid letting anxiety generalize: thought catching and systematically overriding impulse to stay isolated in order to remain safe Exercises to reduce anxiety: deep breathing, progressive muscle relaxation, visualization, meditation

8 Part I: Epilepsy & Mental Health Challenges DEPRESSION: also comes with the territory of the typical epilepsy experience. Loss of former freedom, independence, and certain skills: self-image Loss of mobility and funds to pursue meaningful and enjoyable activities Side effects of epilepsy medications (to varying extents) Changes in relationships within the family and sometimes with friends (overprotection, feeling of being a burden)

9 Part I: Epilepsy & Mental Health Challenges (continued) DEPRESSION: also comes with the territory of the typical epilepsy experience. Cognitive problems, especially with memory Possible loss of employment or academic standing Symptoms of dysthymia (chronic depressed mood: sadness, loss of energy and interest, changes in appetite and sleep patterns, sense of hopelessness and worthlessness) Treatments (therapy, medication, social support, self-help exercises)

10 Part I: Epilepsy & Mental Health Challenges Relaxation exercises: University of New Hampshire Health Services: Joanne D'Amico, an RN who provides guided imagery, meditation, relaxation, and stress relief techniques: Progressive muscle relaxation: E&feature=iv&src_vid=86HUcX8ZtAk&annotation_id=annotation_ Guided imagery of ocean escape: Guided imagery with Dr. Harry Henshaw (Miami): If you d like more detailed information/instructions about these exercises sent to you by , please info@efof.org.

11 PART II: COGNITIVE CHALLENGES OF EPILEPSY

12 Part II: Cognitive Challenges of Epilepsy Memory-related problems prevalent (especially associated with partial onset seizure disorder): the role of the hippocampus, which stores and transfers recent memories, and its location in the temporal lobes Concentration problems related to memory difficulties ADHD, especially in children Processing speed difficulties: relationship to multi-tasking in employment

13 Part II: Cognitive Challenges of Epilepsy Frequent need for accommodations in school and, as possible, at work: time extensions, use of reminders in modality of one s relative memory strength (spoken vs. visual reminders) The federal laws protecting the rights of disabled students of all ages: Section 504 and development of Individual Educational Plans (IEPs) Important to note: basic intelligence is typically unchanged

14 Part II: Cognitive Challenges of Epilepsy Strategies for improving memory skills: Physical exercise (walking, etc.; also helps alleviate depression) Active attention (vs. passive) Avoiding distractions while receiving information to be recalled Rehearsal of procedures or steps (helps memory encoding) Elaboration: involving more detail and information from more senses in the memory Association of new material with known material, visual or auditory links

15 PART III: EPILEPSY & DISABILITY APPLICATIONS

16 Part III: Epilepsy & Disability Applications It is not necessary to have frequent seizures to be eligible for disability benefits through the Social Security Administration MEMORY PROBLEMS, documented through standardized testing, are the most frequent basis for successful disability applications/ appeals on the part of those with epilepsy whose seizures are reasonably well controlled DEPRESSION AND ANXIETY are also bases for disability associated with epilepsy, but are taken more into consideration if there is psychiatric diagnosis and treatment of these conditions It is possible both to appeal and to reapply for benefits after having been turned down for disability benefits. It is advisable to have a disability attorney help with the appeal process; a legitimate disability attorney will not charge any fee if the appeal is not successful and will receive his/her percentage of the initial (retroactive) check from the Social Security Administration itself.

17 PART IV: EPILEPSY & NON-EPILEPTIC SEIZURES (NES or PNES)

18 Part IV: Epilepsy & Non-Epileptic Seizures (NES or PNES) Some seizures are not caused by abnormal brain wave patterns at the time of their occurrence and are thus called Non-Epileptic Seizures They are not fake seizures, but seizures with a different origin and somewhat different manifestation; they can still be dangerous These seizures do not respond to epilepsy medications designed to calm brain wave activity. They are treated through psychological and psychiatric therapies. Many people with NES have a history of psychological trauma (especially sexual or physical abuse in childhood, but also being bullied, injured in accidents, or traumatized in other ways; some have PTSD)

19 Part IV: Epilepsy & Non-Epileptic Seizures (NES or PNES) The seizures appear to be a dissociative disorder in which emotion is converted into physical expression without the individual being conscious of this occurring Many people with NES, also called PNES for psychogenic nonepileptic seizures, have epileptic seizures, too; thus, it may not be an either/or diagnosis for some patients Telemetry (extended EEG monitoring, usually in a hospital) is used to study the extent of brain wave changes during seizure activity observed through external manifestation PNES, as well as neurologically-produced seizures, are a form of disability and should not be considered as less valid or debilitating a disorder

20 Want to reach the EFOF? Call or call your local office Miami, Jacksonville, Ft. Lauderdale, West Palm Beach, Treasure Coast, Daytona, Gainesville, Pensacola Visit efof.org facebook.com/epilepsyfla twitter.com/efof instagram.com/epilepsyfla linkedin.com/company/epilepsyfoundation-of-florida

21 Thank you!