1. "When feelings get too much" : Athetoid CP (and other neurological conditions) Emotions and Augmentative and Alternative Communication Katie Caryer Chris Sherlock Communication Matters 2012

2. Contact details Chris Sherlock Speech and Language Therapist Access to Communication and Technology christinesherlock@nhs.net Katie Caryer MA (Disability Studies & Special Education Leeds University)

3. What are talking about? An important part of living with some CP and some other neurological conditions Not psychiatric disorder, not a LD –But the effects can have mental health impacts –People can be medicated “Emotional overspill”, “Pseudo-bulbar affect” Feelings and the way they come out can be Extreme Not matched to the event Not understood by others Last too long Damage relationships and opportunities Mislabelled and misjudged Misdiagnosed

4. Literature Much is related to brain injury/neurological conditions in later life Work acknowledges the impact for person, those close to them and the need to know Not diagnosed enough and doctors don’t talk about it “Involuntary emotional expression disorder” Cummings et al 1996 Distinguish it from LD and depression USA drug treatment related to ALS (MND) and MS. Some use in the UK.

5. Why are we talking about this? Very little help available, so good to talk about it Raise awareness Personal experiences Explore what might or might not help –AAC –Other support and approaches –How to inform other people about “emotional overspill”

6. What did we do? Katie asked people about their experiences on CM Google board, Facebook and One Voice Forum 13 responders, PwuAAC, relatives and professionals 2 questionnaires: PwuAAC and others 11/13 by or representing people with CP –Athetoid/dystonic/dyskinetic type

7. What did we ask? What is your condition? How do you communicate? How old are you? Describe yourself in a sentence or two Do you have bigger reactions to emotional reactions that do not match the experience? How does this effect your life? How does this effect the people around you? Do you have any tips for dealing with these experiences? Is there any thing in your AAC system that helps/makes it worse? What are the 2 things you would like Someone else to know about this experience? How much do you understand of this issue? What information, advice or support have you been given and by whom? Any thing else you want to tell us?

8. What is it like? Can’t control it Embarrassing Exhausting Usually lasts for minutes not hours “I laugh when I should cry” I can’t control the laughing at funerals and other bad things”

9. What is it like? 2 People can stare “Lost mates and assistants, warnings and employment difficulties: worse than CP” Feelings of remorse Damage to belongings and opportunities Makes someone seem younger than they really are and as if they have LD

10. What is it like for others? “Very hard to watch him being so distressed and feel helpless” “Switch off my own feelings towards the person” Feeling embarrassed Exhausting

11. Why does it happen? We don’t really know……but The motor control parts of the brain involved in athetoid CP are close to the parts involved in emotional regulation The overspill movements of Athetoid CP might have overspill emotions

12. Areas of the brain: outside

13. Areas of the brain: inside

14. Areas of the brain: brain stem and limbic system

15. What other people tell us Really helps to know not alone Although the reaction looks extreme the feelings underneath may not be stronger than for other people If someone is laughing may be hurt need to check May get easier with time for some people

16. What about AAC? Can help give pointer to reasons for upset Need to have the right words Does not help at the time Feelings page Useful afterwards to talk about the reasons and feelings but need to be careful about the timing Technical hitches can cause upset

17. What is useful? Knowing that you are not the only person Distraction Acknowledging why upset and the cause “Riding it out”

18. How can we cope better with this? Top tips You are not the only one It is not a mental illness Other people need your help to understand: explain before it happens Have an explanation and perhaps an apology ready in your AAC It is all right to be happy, cross, sad

19. How can we explain it to others? Top tips It is part of the movement condition e.g. CP The person may not feeling as strongly as it appears to you How they seem may not match what they feel e.g. laughing but something is painful Take some time to recover yourself Help with the AAC to explain and repair Find out what helps the person “ride it out” best

20. What next? A leaflet Please take a copy and let us know what you think Email address on the leaflet If it is useful and improved we might ask CM/SCOPE to have it on website

21. A leaflet

22. Thanks Responders One Voice CM Katie’s PAs Mum Facebook friends Judy Sally

23. References and Links Athetoid Cerebral Palsy. Some emotional implications, Gill Brearly, MCSP, Cert.Ed. Dip,Counselling Links: Scope www.scope.org.uk/ 1 Voice www.1voice.info/ ‘Unspoken’ Facebook Group www.facebook.com/#!/groups/387030211362324/ www.facebook.com/#!/groups/387030211362324/ http://www.pbainfo.org/ http://mndresearch.wordpress.com/2011/10/06/nuedexta/ Cummings, J. L. et al (2006) Defining and diagnosing involuntary emotional expression disorder. CNS Spectrums 2006 Jun;11(6):1-7. http://www.cnsspectrums.com/aspx/articledetail.aspx?articleid=475