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Symptomatic management of ALS Gestion des symptômes de la SLA

Explore the multidisciplinary approach to managing ALS symptoms such as cramps, spasticity, secretions, pseudobulbar affect, and more. Learn about assistive devices, nutritional care, respiratory support, and palliative care. Expert neurologists share their insights.

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Symptomatic management of ALS Gestion des symptômes de la SLA

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  1. Symptomatic management of ALS Gestion des symptômes de la SLA ALS Education Day September 14th 2017 Rami MassieNeurologist, ALS Clinic, MNH

  2. Outline • Multidisciplinaryclinics • ALS Symptom Management • Cramps - Fasciculations • Spasticity • Secretions • Pseudobulbar affect • Mobility and speech assistivedevices • Other: • Pain – Constipation – Depression – Fatigue • Nutritional care and dysphagia • Respiratory care • Palliative care • Conclusion

  3. MNI ALS Team

  4. MultidisciplinaryClinics • Improved QOL • Improvedsurvival in moststudies • Independent of the use of Riluzole – NIV – Gastrostomy • Reduction in hospitalisations • Longer travel time (lessconvenient) • Very long tiringdays • Depressing

  5. Symptommanagement Supportive and symptomatic management of amyotrophic lateral sclerosis Esther V. Hobson and Christopher J. McDermott. Nature Neurology Reviews, volume 12, September 2016, 526-538. A survey of clinicians’ practice in the symptomatic treatment of ALS. Dallas A Forshew and Mark B Bromberg. ALS and other motor neuron disorders 2003 4, 258–263

  6. Spasticity • Physiotherapyexercises – stretching • Baclofen • Tizanidine • Marijuana • Dantrolene • IntrathecalBaclofen

  7. Secretions - Saliva • Anticholinergicmedications • Local: Atropine drops • Systemic patch: Scopolamine patch • Oral: Amitriptyline – Glycopyrrolate • BotuliniumToxin Injection • Onlyproventreatment by RCT • Small risk of increaseddysphagia • Marijuana • Radiotherapy • Suctiondevice

  8. Secretions - Thick • Mucolytic agents • Carbocysteine – N/A in Canada or US • AcetylCysteine • Respiratory techniques • Breath-stackingexercies • CoughAssistdevice (mechanical insufflation/exsufflation devices) • NIV (BiPap) • Increasingbipaphumidity - Nebulised Saline • Suction

  9. Pseudobulbar affectEmotionallability • Antidepressantmedications • TCA’s: Amitriptyline • SSRI’s: Citalopram, Escitalopram, etc… • Dextrometharphan – Quinidine (Nudexta)

  10. Assistivedevices • Mobility • AFO and Wristsplints • Cane – Walker – Déambulateur • Wheelchairs • Neck collars – Thoracic/Abdminal Corset • HospitalBed – Cushions (Ulcerprevention) • Home adaptation (Toiletaccess – single floor– … ) • Speech • Writingboards • Text-to-speech Apps (via tablet) – Voice banking • Eye-gaze software • Brain-Computer interfaces

  11. Nutrition and dysphagia • Weightloss • Decreasedintake: dysphagia – poorappetite – limbweakness • Increasedloss: IncreasedEnergyneeded – Muscle wasting • Poor prognostic factor • High-Calorie dietmayimprovesurvival • Regular assessments and counseling • Swallowing – Techniques to prevent aspiration/choking • Nutritional – Change of texture, hypercaloric nutrition Hypercaloric enteral nutrition in patients with amyotrophic lateral sclerosis: a randomised, double-blind, placebo-controlled phase 2 trial. Lancet. 2014 Jun 14;383(9934):2065-2072.

  12. Gastrostomy • 2 Main techniques in Canada • Radiological guidance versus Endoscopic • Advantages • Weight-stabilisation if < 10% weightloss • Earlier insertion • Possible improvedsurvival • Bulbar-onset patients withdysphagia • Possible improvedquality-of-life • Decreasedanxiety/fatigue withmeals • Increased care-giverburden • Futile in frail/end-of-life patients ProGas. Lancet Neurology 14, 702. (2015)

  13. Respiratory care • Regular monitoring of respiratoryfunctionrecommended • History – Measurements • Regular immunizations • Non-invasive Ventilation (BiPap) • 1st treatment to improve • Survival: 7-13 months – 19 months if bulbar-onset • AND • QOL – even if late in disease • Can bechallenging • Patient perseverence • Professional support • Paralleltreatment of dry mouth – claustrophobia • Role of opioids to alleviatedyspnea Bourke et al. Effects of NIV on onsurvival and QOL in patients with ALS: a RCT. Lancet Neurol 5, 140-147 (2006). Identifying who will benefit from NIV in ALS in a clinical cohort. Berlowitz DJ, et al. J NeurolNeurosurg Psychiatry 2016;87:280–286.

  14. Palliative care • Early and continuousinvolvementrecommended • Role in symptom control • Alternative to Gastrostomy • When/how to stop NIV • End-of-life care at home or institution • Aide Médicale à mourir

  15. Conclusion • Symptom management in ALS iswhatwe do at everyclinicvisit • Importance of multidisciplinaryapproachwith • Othermedicalspecialties • Otherhealthprofessionals • Keeping patient concerns and needs at the center of patient care

  16. Merci! Questions? rami.massie@mcgill.ca

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