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
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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
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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
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The need is great
Source: ALS Society of Canada 2019 Report to the Community
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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
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ALS.CA Source: ALS Society of Canada 2019 Report to the Community
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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
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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
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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
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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
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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
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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
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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
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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
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ALS Society of Canada
ALS.CA
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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
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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
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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.
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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
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Thank you!
Questions?
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