Management of Patients with ALS
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1 Management of Patients with ALS Nesreen H. Alawami, M.A., CCC-SLP, BRS-S Senior Speech Language Pathologist The Methodist Hospital November 18, 2011
2 Outline What is ALS? Implications of Cognitive Involvement Dysarthria Profile Dysphagia Presentation Conclusion
3 Amyotrophic Lateral Sclerosis (ALS) A progressive Motor Neuron Disease (MND) involving both: Upper Motor Neurons (UMN) hyperreflexia, rigidity, weakness Lower Motor Neuron (LMN) hyporeflexia, muscle cramps, fasciculations, atrophy, weakness Bulbar vs. Spinal
4 Triggers Genetic predisposition Environmental factors: Trauma: surgery, physical injury, falls Irritants: toxins, chemicals Infections
5 Statistics 3-4:1 : ratio in 20s-30s vs. 1:1 post-menopause Incidence: /100,000/year in US Prevalence: 5-7/100,000 in US 5-10% familial vs. 90% sporadic 50% of the population survive 3-5 years after established diagnosis Average age of onset is years
6 Diagnosis Diagnosis by excluding other conditions with related symptoms Clinical examination Electrodiagnostic testing Radiographic exams Lab/blood work up
7 Disease Management Proactive multidisciplinary symptomatic management Neuroprotection Antioxidants Respiratory management Spasticity Pseudobulbar affect Nutrition Sialorrhea
8 Cognition 50% show evidence of cognitive impairment Most common pattern is mild frontal lobe executive dysfunction 15% of the affected patients develop frontotemporal dementia (FTD)
9 Cognitive Impairment Initiation Insight Personality Attention & multitasking Problem solving & decision making Organization & planning Perseveration & impulsivity Following recommendations/strategies
10 Cognitive Management Simplify Institute a pattern with structured schedule Modify the environment Positive reinforcement Encourage caregivers to change their response to the negative behavior Adjust roles as primary decision-maker
11 Dysarthria Speech changes typically precede dysphagia Type: mixed spastic (UMN) flaccid (LMN) Characteristics: hypernasality, hoarseness, strain, slow rate, imprecise articulation, monopitch, reduced volume Bulbar onset patients had greater dysarthria at time of ALS diagnosis (Tomik & Guiloff, 2010) Dysarthria effects 70% of limb onset at later stages
12 Dysarthria Management Speech intelligibility strategies Communication strategies Alternative Modes of Communication: No technology Low technology High technology Apps
13 Dysphagia Oral Presentation Initial involvement: hypoglossal > trigeminal & facial motor neurons Oral Dysphagia: Reduced labial seal Delayed bolus manipulation and transfer Velopharyngeal insufficiency Piece meal deglutition
14 Dysphagia Pharyngeal Presentation Laryngeal sensory deficits found in 55% of ALS patients (Milan et al., 2006) Pharyngeal Dysphagia: Delayed initiation of stage transition Weakened pharyngeal constriction Reduced hyolaryngeal excursion Decreased epiglottic inversion Airway invasion
15 Dysphagia Management Therapy focuses on maintaining function for as long as possible Management of symptoms: Diet modification Compensatory strategies Environmental modification Patient and family education
16 Conclusion There is a great deal that can be done to treat the symptoms of ALS, to improve the quality of life of the patient, and to help caregivers and the family cope with the disease Amyotrophic Lateral Sclerosis A Guide for Patients and Families: Third Edition Hiroshi Mitsumoto, MD
17 Team Hope Thank you
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19 References Lever, T.E., Gorsek, A., Cox, K. T., O'Brien, K. F., Capra, N. F., Hough, M. S., Murashov, A. K. (2009). An animal model of oral dysphagia in amyotrophic lateral sclerosis. Dysphagia, 24, Lever, T.E., Simon, E., Cox, K. T., Capra, N. F., O'Brien, K. F., Hough, M. S., Murashov, A. K. (2010). A mouse model of pharyngeal dysphagia in amyotrophic lateral sclerosis. Dysphagia, 25, Limousin, N., Blasco, H., Corcia, P., Gordon, P. H., De Toffol, B., Andres, C., Praline, J. (2010). Malnutrition at the time of diagnosis is associated with a shorter disease duration in ALS. Journal of Neurology Science, 297, Logroscino, G., Traynor, B. J., Hardiman, O., Chio, A., Couratier, P., Mitchell, J. D., et al. (2008). Descriptive epidemiology of amyotrophic lateral sclerosis: new evidence and unsolved issues. Journal of Neurology, Neurosurgery and Psychiatry, 79, Magnus, T., Beck, M., Giess, R., Puls, I., Naumann, M., Toyka, K. V. (2002) Disease progression in amyotrophic lateral sclerosis: predictors of survival. Muscle & Nerve, 25, Merrilees, J., Klapper, J., Murphy, J., Lomen-Hoerth, C., Miller, B. L. (2010). Cognitive and behavioral challenges in caring for patients with frontotemporal dementia and amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 11, Neary, D., Snowden, J. S., Mann, D. M. (2000). Cognitive change in motor neurone disease/amyotrophic lateral sclerosis (MND/ALS). Journal of Neurological Sciences, 180, Ringholz, G. M., Appel, S. H., Bradshaw, M., Cooke, N. A., Mosnik, D. M., Schulz, P. E. (2005). Prevalence and patterns of cognitive impairment in sporadic ALS. Neurology, 4, Spataro, R., Ficano, L., Piccoli, F., La Bella, V. (2011). Percutaneous endoscopic gastrostomy in amyotrophic lateral sclerosis: effect on survival. Journal of Neurology Science, 304,
20 References Sterling, L. E., Jawaid, A., Salamone, A. R., Murthy, S. B., Mosnik, D. M., McDowell, E., et al. (2009). Association between dysarthria and cognitive impairment in ALS: A prospective study. Amyotrophic Lateral Sclerosis, 11, 1-6. Strand, E. A., Miller, R. M., Yorkston, K. M., Hillel, A. D. (1996). Management of oral-pharyngeal dysphagia symptoms in amyotrophic lateral sclerosis. Dysphagia, 11, Teismann, I. K., Warnecke, T., Suntrup, S., Steinsträter, O., Kronenberg, L., Ringelstein, E. B., Dengler, R., Petri, S., Pantev, C., Dziewas, R. (2011). Cortical processing of swallowing in ALS patients with progressive dysphagia A magnetoencephalographic study. PLoS One, 6, Tomik, B., Guiloff, R. J. (2010). Dysarthria in amyotrophic lateral sclerosis: A review. Amyotrophic Lateral Sclerosis, 11, Wheaton, M. W., Salamone, A. R., Mosnik, D. M., McDonald, R. O., Appel, S. H., Schmolck, H. I., DrMed, Ringholz, G. M., Schulz, P. E. (2007). Cognitive impairment in familial ALS. Neurology, 14, Witgert, M., Salamone, A. R., Strutt, A. M., Jawaid, A., Massman, P. J., Bradshaw, M., Mosnik, D., Appel, S. E., Schulz, P. E. (2010). Frontal-lobe mediated behavioral dysfunction in amyotrophic lateral sclerosis. European Journal of Neurology, 17, Zoccolella, S., Beghi, E., Palagano, G., Fraddosio, A., Guerra, V., Samarelli, V., Lepore, V., Simone, I. L., Lamberti, P., Serlenga, L., Logroscino, G. (2007). Riluzole and amyotrophic lateral sclerosis survival: a population-based study in southern Italy. European Journal of Neurology, 14,
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