Living with ALS
With ALS, it’s important to be proactive about managing your disease. There are many steps you can take that may help enhance your quality of life, reduce possible symptoms and even prolong survival.
Communicating with your care team is key
It’s extremely important to stay in contact with your healthcare provider(s).
Communicating regularly will help them monitor your disease progression, manage any symptoms you may be experiencing, and connect you with information and resources you may need.
Research shows that multidisciplinary care has helped people develop a better understanding of how the course of their disease will look like (disease prognosis).
What is multidisciplinary care?
Multidisciplinary care is personalized care provided by a team of specialists from a range of disciplines. Each of these healthcare providers have expertise to help people living with ALS at various points throughout the ALS journey.
Your team may be comprised of:
Neurologists
Nurse coordinators
Physiatrists
Occupational therapists
Physiotherapists
Social workers
Speech-language pathologists
Dietitians
Research coordinators
How does multidisciplinary care help improve outcomes?
There are many multidisciplinary care clinics across Canada, known as ALS clinics, that optimize the delivery of care to patients in need. Attending an ALS clinic may provide the following benefits:
- Prolonged survival compared to those who attend general neurology clinics
- Fewer and shorter hospital admissions compared to patients who do not receive multidisciplinary care
- Increased use of adaptive equipment
According to a study that examined the impact of multidisciplinary care on survival, patients who attended an ALS clinic experienced a:
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47.3% decreased risk of death
7.5 month increase in average survival time
Your loved ones are also a vital source of support
It is important that your healthcare provider(s) refer you and your caregivers together to a multidisciplinary clinic so that you can receive regular support and access to resources.
Click here for a helpful resource to take with you during your appointment.
To learn more about or to locate an ALS clinic in your province or territory, click here.
Insights from healthcare professionals:
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Working to improve the lives of Canadians impacted by ALS:
Q&A with Dr. Lorne Zinman -
The role of spiritual care in ALS:
Q&A with Lana Kim McGeary -
Optimizing nutrition in ALS
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Nurse perspectives:
The gift of caring for people with ALS -
Improving the quality of life for ALS patients through speech and language pathology (SLP)
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Maintaining independence while living with ALS with the help of occupational therapy
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The Role of a Respirologist on the ALS Care Team
