LORNA MYERS, PH.D. NORTHEAST REGIONAL EPILEPSY GROUP QUALITY OF LIFE AND WELLNESS IN PNES

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 RELATED QOL Health problems can obviously affect the patient’s sense of wellbeing (HRQOL) What contributes to is? Limitations (driving prohibition, safety concerns) Functional status (thinking and memory changes) Functional status (depression, anxiety) Functional status (obstacles to physical exercise) Is there social support? Economic concerns

FOR THE BETTER OR WORSE QOL CAN CHANGE

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? Seizure-factors: Seizure disorder: unexpectedly 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: Uncaring and rejecting attitudes: “Faking, 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.

SURVEY: WHAT DID YOU RECEIVE WHEN YOU WERE TOLD YOU HAD PNES When you were first given the diagnosis of PNES/NEAD did you also receive (if you received several, pick the one that was most helpful) 115 votes: The name of a psychotherapist/psychiatrist 27% A recommendation to seek a psychotherapist on your own 29% A book 3% A pamphlet 10% Nothing 32%

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 aren’t making the effort, 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?

BUT QUALITY OF LIFE IS A CHOICE TOO

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

SAFETY MEASURES

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

SAFETY MEASURES

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 the PNES community(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 the characteristics of your episodes Choose exercise at your fitness level Implement safety guidelines (automatic stop cord, buddy system)

SAFE EXERCISE

POTENTIALLY DANGEROUS

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 TO CONSIDER 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

PEACEFUL SLEEP GOAL:

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

HEALTHY DIET

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 the PNES community (raising awareness, funds, walks, meetings) Use social media and the internet (if helpful) Facebook: Psychological non epileptic seizures

TAKE HOME MESSAGE 4) Owning the 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: for continuing education scholarships and funds for educational programs

OUR COMMUNITY ACTIVITIES: DC WALK

RIDING TO RAISE FUNDS FOR PNES

OUR COMMUNITY ACTIVITIES: KNITTING WORKSHOPS

OUR COMMUNITY: ANNUAL PNES CONFERENCE

THANK YOU! Let’s stay in touch