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CHPCP Ed Day 2021 2021‐03‐09 ALS Society of Canada Kim Barry, Senior Regional Manager ALS.CA Faculty/Presenter Disclosure • Faculty: Kim Barry • Relationships with financial sponsors: • None ALS.CA 1 2021‐03‐09 Disclosure of Financial Support • This program has received financial support from Hospice Care Ottawa, Carefor Health & Community Services and Bayshore Home Care Solutions in the form of an educational grant. • This program has not received in-kind support. • Potential for conflict(s) of interest: • None ALS.CA What is ALS? • Amyotrophic Lateral Sclerosis • Lou Gehrig’s Disease • Motor Neuron Disease • Maladie de Charcot • Sclérose Latérale Amyotrophique 3| ALS.CA 2 2021‐03‐09 What is ALS? Gradually the body becomes paralyzed because the brain is no longer able to communicate with the voluntary muscles Over time, as the brain’s connection with the muscles breaks down, ALS patients will lose the ability to walk, talk, eat, swallow, and breathe 4| ALS.CA The need is great Source: ALS Society of Canada 2019 Report to the Community ALS.CA 3 2021‐03‐09 What is ALS? • ALS can strike anyone regardless of their sex, ethnic group, socio-economic status • No specific diagnostic test – a process of elimination • Two types: limb onset and bulbar • ALS is an individual disease – everyone progresses differently • Most commonly diagnosed 40 – 70 years of age • The incidence rate AND mortality rate: 2-3/100,000 people per year • There is no cure 6| ALS.CA ALS.CA Source: ALS Society of Canada 2019 Report to the Community 4 2021‐03‐09 ALS: Symptoms • Falls / Tripping • Dysphagia (difficulty swallowing) • Gait spasticity, drop foot • Dyspnea (shortness of breath) • Muscle loss and weakness • Dysarthria (slurred, slow, and • Muscle stiffness or rigidity difficult speech) • Fasciculations (muscle twitching) • Hyperreflexia (increased or 'brisk' • Excessive fatigue reflexes) • Insomnia • Emotional lability / pseudo bulbar • Sleep apnea affect • Diminished ability to cough ALS.CA ALS: Symptoms What is not affected • Bowel / bladder function • Sexual function • Vision / eye movement • Sensory system Involuntary muscles such as the heart are unaffected 9| ALS.CA 5 2021‐03‐09 Cognitive Changes ALS and Frontal Temporal Lobe Dementia (FTD) • Some ALS patients DO experience cognitive changes • FTLD affects personality and/or behaviour • Symptoms include apathy, restlessness, mood swings, loss of reasoning or problem-solving ability, repetitive behaviors • A substitute decision maker may be required when the patient can no longer make decisions 10 | ALS.CA Living with ALS Impacts Emotional Practical • Mental health • Accessibility • Denial • Transportation and travel • Isolation • Communication • Grief Physical Financial • Rapid progression • Personal support • Symptoms • Home modifications • Unpredictable • Costs approx. $150K-$250K ALS.CA 6 2021‐03‐09 Living with ALS Advance Care Planning • Difficult discussions for clients and their families • End-of-life decisions • Long Term Care options • Available Palliative Care services • Consequences of refusing services, equipment, treatment, etc. ALS Canada Regional Managers may liaise with health care professionals to provide support with these discussions 12 | ALS.CA ALS: Symptom Management Drug Therapy: • Various; Riluzole, Radicava / Edaravone Assistive Devices: • Walkers, manual wheelchairs, power wheelchairs, lifts, hospital beds, bathroom equipment, etc. Communication Devices: • iPads with speech apps, Eye gaze communication 13 | ALS.CA 7 2021‐03‐09 ALS: Symptom Management Respiratory support: • Invasive and non-invasive aids available • Cough assist devices Swallowing and nutrition: • Calorie increase • Modifying consistency and texture of food • PEG tube 14 | ALS.CA Care for the Client Ontario ALS Clinics • McMaster University Medical Centre, Hamilton • Providence Care Hospital, Kingston • Motor Neuron Disease Clinic, London • The Ottawa Hospital, Ottawa • Sunnybrook Health Sciences Centre, Toronto Contact details can be found on our website als.ca 15 | ALS.CA 8 2021‐03‐09 Care for the Client: In the community • LHIN Home Care Services • e.g. PSWs, Occupational Therapists, Nurses, Dieticians, Speech Language Pathologists, etc. • Family Doctor • Palliative Care Networks • Community Hospice Program 16 | ALS.CA ALS Society of Canada ALS.CA 9 2021‐03‐09 Our mission We work with the ALS community to improve the lives of people affected by ALS through support, advocacy and investment in research for a future without ALS ALS.CA Support Services One-on-one support from an ALS Canada Regional Manager Support groups to share experiences and learn from others Access to equipment and mobility devices to cope with physical changes Information and resources to guide people living with ALS and educate the public ALS.CA 10 2021‐03‐09 Research Invest in ALS research to fuel scientific discoveries, improve clinical care, and create a future without ALS Provide education about ALS research and share updates about clinical trials 20 | ALS.CA Advocacy Engage with the federal and Ontario governments to represent the voices and experiences of people living with ALS. Advocate for policy changes, including access to therapies, improved home and community care and research funding. 21 | ALS.CA 11 2021‐03‐09 COVID-19 Impact Since the outbreak of COVID-19: • Virtual interactions have increased 250% since March • Connected with people affected by ALS over 16,000 times by video, phone, email, text • Hosted over 120 support groups by video • Delivered over 2200 pieces of equipment ALS.CA ALS.CA 12 2021‐03‐09 Thank you! Questions? ALS.CA 13.
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