Quality of life and wellness in PNES Lorna Myers, Ph.D. Northeast Regional Epilepsy Group
Quality of life: QOL and HRQOL • What is QOL? The perceived quality of an individual’s emotional, physical, and social life. It is made up of many factors: social economic conditions, safety, living conditions, health, etc. • Health problems can obviously affect the patient’s sense of wellbeing (HRQOL). It is a subjective assessment of risks, limitations, functional status (cognitive, emotional, and physical), support, social economic conditions, etc.
QOL can change For the better or worse
QOL and PNES • QOL in persons with PNES tends to be poor. • QOL in PNES < medically intractable epilepsy • WHY do you think this is the case?
Why is QOL so poor in PNES? • Many reasons: • Seizure disorder: unexpected, intrudes on life, potentially dangerous, may affect work/education/social life. Real limitations and isolation may follow. • Psychological factors: depression, anxiety, trauma history and PTSD associated with PNES.
Why is QOL so poor in PNES • Ignorance and negative attitudes of health professionals: • Faking, uncaring and rejecting: drug seeking, attention seeking. • Discharge is speedy: “I need this hospital bed for a patient who is really sick.” • Often no referrals are given. • Mental health pros are unfamiliar, often refuse treatment, doubt diagnosis of PNES bouncing patients back to neurology.
Why is qol so poor in PNES? • Ignorance and negative attitudes of family and friends, bosses, general public: • This is not a REAL condition, we thought you had epilepsy. “Get over it, you are not getting better because you’re weak, you lack will-power.” • Overreaction: Unnecessary EMTs and ER visits with subsequent high medical bills. • PNES information is not readily available. Absence of awareness and recognition as a valid and serious health condition.
Why is qol so poor in pnes • Real changes: • Loss of independence • Mobility (i.e. driving) • Sick status • Inactivity • Job? • School?
QOL and safety • Depends on the characteristics of the episodes. (paralysis vs. intense motor output vs. drops) • Educate important people in your life about what your episodes look like so they can recognize them and know what to do.
QOL and safety • Preventing injuries: • Pad sharp corners of furniture, bathroom vanities, etc. • Thick rugs • Avoid open flames-use microwave, care when removing hot objects from oven. • Avoid steep staircases • Make sure someone is home when showering, don’t lock bathroom door, door should open outwards. • Keep away from side of road or subway/train tracks
QOL and safety • First Aid: Depends on your episode characteristics • Zone out: need someone to stay with you until you recover. • Physically intense: someone needs to make sure you don’t injure yourself. • Calling an ambulance is not usually necessary unless you have injured yourself during episode. • Carry a laminated card • Wear medical alerting jewelry: Conversion disorder, seizures • Cell Phone contact: ICE
QOL and pnes: Driving • If there is a possibility that an episode while driving can hurt you or another person, you must not drive • Driving prohibition laws vary from state to state • How to get around? Public transportation, reliance on others, taxi wholesale rates, walking.
Qol and PNES: Work • If possible, keep working: • Accommodations (work from home, time for doctor visits, avoid being sent out of town, breaks, perhaps even a leave of absence). • If you lose your job, avoid isolation. Volunteer work, social activities through your community centers or doctor’s office. • Disability application
How to improve qol? • Avoid social isolation: • Use community resources • Hospital and doctor office wellness programs • Support groups • Become part of a PNES movement (raise awareness, funds, walks, meetings) • Take care of yourself: • Therapy • Exercise • Sleep • Diet
PNES and wellness • Taking care of yourself • Exercise • Sleep • Diet
PNES and exercise • Get medical clearance from doctor before starting a new exercise regimen • Choose exercise that is safe given your episodes • Choose exercise at your fitness level • Implement safety guidelines (automatic stop cord, buddy system)
Pnes and exercise • WHY exercise? • Improves physical health, stamina, balance, lowers body fat, etc. • Reduces anxiety, depression, tension, fatigue • Burns stress hormones and encourages production of endorphins - “well being hormones” • Sense of accomplishment
Types of exercise • Brisk walking • Moderate jogging • Cycling on stationary bike • Core muscle building • Tai chi • Yoga • Zumba • Gardening • Martial arts
PNES and sleep • Poor sleep depression and anxiety • Poor sleep: • Poor concentration • Irritability • Increased risk of accidents • Weak immune system • Weight gain • Premature aging • Cardiac problems • Dependence on caffeine and sleep aids
PNES and sleep • Do’s • Figure out how many hours you need • Try to go to bed and wake at the same time • Keep room dark and cool (65-72 F degrees) • Make sure mattress and pillows are comfortable • Use bed only for sex and sleep
Pnes and sleep • Don’t • Eat heavy meals or drink a lot of fluids right before sleep • Use alcohol to induce sleep • Drink caffeine in the evening • Take naps if possible • If you can’t sleep, don’t stay in bed more than 30 minutes
PNES and Diet • High quality fuel helps your mind and body run better. • Check with your doctor and/or nutritionist. • Do: • Eat a balanced diet: fresh vegetables, fruits, lean protein • 5-6 meals a day-breakfast is important • Eat as soon as you feel hungry or have signs of low blood sugar • Keep yourself hydrated (water is best)
PNES and diet • Avoid: • Foods high in sugar or refined carbohydrates (cakes, cookies, white bread) • Fasting, skipping meals, or following extreme restrictive diets • Caffeine as much as possible • Alcohol as much as possible • Rushing while eating
Take home message • QOL in PNES is definitely affected but you can improve your QOL in a number of ways • 1) Participating in psychological treatment regularly and actively • 2) Taking care of yourself • Exercise • Sleep • Diet
Take home message • 3) Avoiding social isolation: • Use community resources • Use hospital and doctor’s office wellness programs • Support groups • Become part of a PNES movement (raising awareness, funds, walks, meetings) • Use social media and the internet • Website: www.nonepilepticseizures.com • Facebook: Psychological non epileptic seizures
Take home message 4) Owningthe condition of PNES. • It is very important that you educate yourself and others about PNES. Knowledge is Power. • Psychogenic Non-epileptic Seizures: A Guide available on Amazon Chapters 8 and 9 • 5) Continue working toward a positive future: • www.epilepsyfree.comfor continuing education scholarships and funds for educational programs
Thank you! • Let’s stay in touch • firstname.lastname@example.org