1. Laura Gregory, MA CCC-SLP Rehab Without Walls - San Antonio, TX

2.  The information provided by speakers in any presentation made as part of the 2012 NAF Annual Membership Meeting is for informational use only.  NAF encourages all attendees to consult with their primary care provider, neurologist, or other health care provider about any advice, exercise, therapies, medication, treatment, nutritional supplement, or regimen that may have been mentioned as part of any presentation.  Products or services mentioned during these presentations does not imply endorsement by NAF.

3.  Laura Gregory, MA CCC-SLP  The following personal financial relationships with commercial interests relevant to this presentation existed during the past 12 months:  No relationships to disclose or list

4.  Overview of the swallowing process  Overview of speech  The team approach  Specific treatments and compensatory strategies

5.  Dysphagia – the clinical term for a disorder of swallowing  Speech Language Pathologist (SLP) aka speech therapist – diagnoses and treats dysphagia  Dysphagia is typically diagnosed through a videofluoroscopic or videoendoscopic swallow examination.

7.  Decreased coordination and oral control  Delayed swallow initiation  Decreased pressure gradient to propel the bolus  Impaired timing of reflexes for airway protection  Pure cerebellar ataxia does not cause decreased strength or sensation

8.  Coughing, especially with liquids and mixed or crumbly textures  Penetration: food/liquid enters the airway but does not pass below the larynx  Aspiration: food/liquid enters the airway and passes to the lungs – can lead to pneumonia  Food feeling stuck in throat  Liquids going into nasal cavity

9. Articulation of speech sounds is a complex process of movements of oral structures coordinated with respiration and voicing. Ataxia affects speech in the areas of  Timing  Coordination

10.  Slurring of sounds  “Scanning speech” with equal emphasis on each syllable  Difficulty modulating volume of voice  Difficulty controlling force or direction of oral movements (overshoot, undershoot)  Inadequate or poorly coordinated breath support  These are referred to as Ataxic Dysarthria

11.  Difficulty communicating with family and friends  Fatigue

13.  Educate yourself and others  Be aware of early signs of difficulty with swallowing and speech  Seek help before swallowing and speech difficulties become a major issue  Recruit a support network

15.  YOU!  Caregivers/family  Friends  Physicians  Speech pathologist  Occupational therapist  Physical therapist  Social worker/therapist  Dietitian

16. VS

17.  YOU! You know yourself best, so you are in the best position to make decisions regarding your healthcare in partnership with the team. The team approach won’t work without YOUR motivation and participation

18. Eating is a social activity!

19. Communication goes two ways.

20.  Discusses signs and symptoms with you  Makes appropriate referrals  Communicates with the team along the way

21.  Speech Pathologist  Evaluation and treatment of the oral/pharyngeal and respiratory components of swallowing  Physical Therapist  Evaluation and treatment of postural and head control as they relate to speech and swallowing. Can also address respiration.  Occupational Therapist  Similar to physical therapist plus adaptive equipment

22.  Social Worker/Therapist  Emotional support for adjustment to disability. Assistance in finding compensatory strategies to decrease frustration when communicating with friends and family.  Dietitian  If changes to the diet are needed for swallowing safety, a dietitian can assist in maintaining adequate nutrition

23.  Universal  Sit upright at 90 degrees with good postural support  Stay upright for 30 minutes after meals  Take small bites and sips  Reduce distractions, including talking  Eat several small meals if fatigue is a factor  Avoid problematic consistencies

24.  An SLP may recommend other strategies based on individual needs.  Chin tuck  Swallowing maneuvers designed to protect the airway  Diet modifications  Soft or pureed food  Solids chopped into smaller pieces  Thickened liquids

25.  Provale cup: delivers 1 tsp per sip  Bionix safe straw: 1 tsp

26.  Less measured but less expensive ways to control the flow of liquid :  Squeeze the straw  Use a cup with a lid

27.  Scooper bowl  Weighted utensils  Dycem

28.  Oral-motor exercises may be of some benefit to improve timing, coordination, and awareness.  Neuro-muscular electrical stimulation (NMES), also referred to as Vitalstim, is not effective for ataxia alone but may be beneficial when there is accompanying weakness.

29.  Naso-gastric tube- can be used for a short period of time when eating by mouth is not safe.  Gastric tube or less commonly a jejunal tube can be surgically placed for long term supplemental or alternate nutrition.  Choosing an alternate method of nutrition is a difficult decision that should involve the entire team and support network.

30.  Speak face to face without distractions  Educate unfamiliar listeners  Break sentences into shorter phrases when you are not understood  Introduce the topic using a single word  Take your time

31.  Overarticulation  Pacing/rhythmic training  Speech agility exercises  Lee Silverman Voice Therapy (LSVT) – Would be beneficial for Ataxia when a patient has difficulty speaking at a consistent volume or coordinating respiration with speech. Evidence base for multisystem atrophy.

32.  Yoga  Music therapy

33.  Low tech: Alphabet board, picture board, etc.  Voice output device (or ipad)  Picture to speech  Text to speech  Access  Hand  Switch  Switch/scanning  Eye gaze

34.  Funding in Texas  Specialized Telecommunications Assistance Program (STAP) http://stap.puc.state.tx.ushttp://stap.puc.state.tx.us  Review of ipad apps  http://www.spectronicsinoz.com/article/iphoneipa d-apps-for-aac http://www.spectronicsinoz.com/article/iphoneipa d-apps-for-aac