1. Quality of life and wellness in PNES
MARCELA A. BONAFINA, Ph.D.
Northeast Regional Epilepsy Group

2. 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.

3. 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

4. QOL can change
For the better or worse

5. 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?

6. 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.

7. 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.

8. 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%

9. 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.

10. Why is qol so poor in pnes
Real changes:
Loss of independence
Mobility (i.e. driving)
Sick status
Inactivity
Job?
School?

11. But Quality of life is a choice too

12. 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.

13. 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

14. Safety measures

15. 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

16. Safety measures

17. 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.

18. 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

19. 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

20. Taking care of yourself
PNES and wellness
Taking care of yourself
Exercise
Sleep
Diet

21. 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)

22. Safe exercise

23. Potentially Dangerous

24. 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

25. Types of exercise to consider
Brisk walking
Moderate jogging
Cycling on stationary bike
Core muscle building
Tai chi
Yoga
Zumba
Gardening
Martial arts

26. 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

27. 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

28. 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

29. Goal:
Peaceful sleep

30. 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)

31. 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

32. Healthy diet

33. 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

34. 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

35. 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

36. our community activities: walks

37. our community activities

38. Riding to raise funds for PNES

39. our community activities: knitting workshops

40. Our community: annual PNES conference & BOOK

41. Thank you!
Let’s stay in touch