Brainstem Impairment: Supporting Communication at all Stages of Recovery

1. Brainstem Impairment: Supporting Communication at all Stages of Recovery Susan K. Fager, Ph.C., CCC-SLP1 Elizabeth K. Hanson, Ph.D., CCC-SLP3 David R. Beukelman, Ph.D.1,2 Madonna Rehabilitation Hospital1 Institute for Rehabilitation Science and Engineering1 University of Nebraska - Lincoln2 University of South Dakota3

2. Brainstem Impairment Etiology • Brainstem stroke (basilar artery occlusion) • Traumatic brain injury • Brainstem tumor • Demyelination • Guillain Barré • West Nile / Guillain Barré syndrome

3. Clinical Profiles • Complete Locked-In Syndrome (LIS) • Incomplete LIS • Transitioning from complete LIS to incomplete LIS 4. Top of the Basilar Syndrome

4. Complete LIS • Early stages of recovery from brainstem impairment • Quadriplegia with intact or near-intact language/cognition • Vertical eye movements • Small number of individuals remain chronically locked-in

5. Incomplete LIS • Severe physical impairments, but not “locked-in” • May have ability to move head or other body parts (limited control and stamina for these activities) • Have more eye control or normal eye control compared to complete LIS

6. Complete to Incomplete LIS • Gradual gain of physical movement control over time • Speech recovery possible but severe dysarthria common in those who do regain some ability to speak

7. Top of the Basilar Syndrome • LIS with impaired attention and arousal • Challenging characteristics for effective AAC intervention

8. Mary’s Story • Brainstem stroke 2002 • Age: 42 • Complete LIS • Husband, daughter age 12 years, twin sons age 8 years • Brief rehab • Lives in nursing home in same town as family • Sees family most weekends

9. Phase I: Early/Acute Intervention • Medical instability • Intervention secondary to medical care • Adjust intervention schedules (shorter but more frequent sessions) • Educate care providers • Establish Consistent YES/NO • Assess motor, vision, attention/arousal • Nurse Call System • Motor response must be 100%! • Positioning • Nurse checks (increase frequency)

10. Educate Care Providers(i.e., communication partners) • Goal: minimize fatigue and maximize participation • Structured communication (basic needs) • Word lists of common needs for staff • Keep interactions brief • Limiting number of questions

11. Increasing Medical Stability • Tolerance for longer communicative interactions increases • Time to trial options for communicating longer messages (e.g., spelling) • Eye linking, eye gaze, partner-dependent scanning • Further assessment of cognitive/language capabilities • Low tech strategies to meet changing communication needs • Educate communication partners!

12. Phase II: Formal AAC Assessment • Reliable low tech methods established • Goal: Evaluate for SGD to support more independent communication • Key considerations • Establish communication advocate • Communication needs • Environments • Capabilities • Formal trials with SGDs • Appropriate access options • Continue with initial training and on-going support!

13. Mary’s Story continued… • Learned partner-assisted scanning; doesn’t like it • Prefers to “mouth” words • Prototype Safe Laser System • Transitioned to ERICA w/eye gaze camera access • Pre-programmed messages • Large targets • Learning to navigate

14. Speech Recovery and AAC • Can be slow and long-term process • Mary’s story: 8 years post, intelligible words when angry! • Re-evaluations important! • Strategies and techniques • Prosthetic intervention • Supplemented Speech

15. Mary’s Story continued… • Later - head control improved • Transitioned to HeadMouse Extreme by Origin Instruments for SGD access • (http://orin.com/index.htm) • Spelling w/WP • Pre-programmed, topic displays • Photo album • “Save to” buttons • STILL prefers to “mouth” words

16. Safe-laser and Head Movement Training

17. Participants

18. Absolute Head Tracking TechnologyAccuPoint (www.invotek.org) Participant • 60 year-old male chronic Guillain Barré • Initial onset Locked-In syndrome • 4 months post onset - minimal head movement to activate light-touch switch • 6 months post onset- increased activity tolerance and head movement to trial head tracking technology

19. Challenges • Minimal head movement • Unable to recalibrate frequently • Computer access needed in a variety of positions • Simple set-up in skilled nursing environment

20. Results • Calibration • Full computer access with scaling of 10:1 • Minimal head excursion (measured from tip of nose) was ¼ in left/right and up and 1/8 in down • Positioning • Successful with calibration and use regardless of position (wheelchair, bed, supine, side-lying) • Communication Functions • Written communication throughout the day when one-way valve in use • Email communication • Internet use • Face-to-face communication at night when one-way valve not in use

21. Results • Set-up/Staff Training • One training session with patient and staff • Patient trained all other staff independently on set-up • Duration of Use • Email/Internet 2 hours/day • Face-to-face communication 8-10 hours in evening and over-night

22. Acknowledgements • Thank you to Madonna Rehabilitation Hospital and the people who rely on AAC and their families for allowing us to share their stories • Absolute Head Tracking funded by NIDRR grant H133S0301065 • Safe-laser project funded by NIH grant 2R42HD35779 • Culp, D., Beukelman, D.R., & Fager, S.K. (2007). Brainstem Impairment. In Beukelman, D.R., Garrett, K.L., & Yorkston, K.M. Eds.), Augmentative communication strategies for adults with acute or chronic medical conditions (pp. 59-90). Baltimore: Brookes Publishing. • Assessment and intervention strategies were based on work by Delva Culp, M.S., CCC-SL