This past month, the Ice Bucket Challenge was brought back into the spotlight when co-founder of the ALS Ice Bucket Challenge, Pat Quinn, unfortunately passed away. As the ALS Association describes, the Ice Bucket Challenge raised more than $220 million for amyotrophic lateral sclerosis (ALS) research. Now, the ALS Society of Canada is sharing how this viral sensation continues to benefit Canadian citizens. In a recent blog post on their website, the organization shares how funds from the Ice Bucket Challenge contributed to the creation of a comprehensive care and management guide.
Ice Bucket Challenge
In 2014, the Ice Bucket Challenge began. If you’re like me, you probably remember seeing the photos and videos all over social media. The challenge consisted of dumping a bucket of icy water over someone’s head and filming it to raise money and awareness for ALS. Now, some of the proceeds have helped fund the creation of best practices for the management, care, and treatment of ALS. You can find a full list of the recommendations published within the Canadian Medical Association Journal.
Some of the topics covered include specialized treatment, disease-modifying treatments, communication of diagnosis, caregiver support, respiratory and nutrition management, and exercise. Altogether, there are over 130 recommendations. These were officially decided through the Pan-Canadian Working Group. Some recommendations include:
- Patients and caregivers wish to be informed about current research, treatments and prognosis when receiving a diagnosis of ALS.
- A personalized exercise program, including strength and aerobic training, should be encouraged for patients who are able to participate.
- Patients with ALS should be regularly followed by a multidisciplinary ALS clinic, along with their primary care provider.
- Health care providers, therefore, need to be attentive to the physical and emotional well-being of the caregivers, and involve them in planning for the impact of ALS on both the patient and themselves.
Prior to the development of these guidelines, there were no recommendations for Canadian ALS care. As a result, there was no consistent standard of care. With these guidelines, many physicians hope that ALS care will now become more effective and standardized.
Additional funding came from the Canadian ALS Research Network (CALS) and ALS Canada Research Program, which helps to make a difference in the lives of patients with ALS.
Amyotrophic Lateral Sclerosis (ALS)
There is no distinct cause of amyotrophic lateral sclerosis (ALS), a progressive neurological disease characterized by nerve cell death in the brain, brain stem, and spinal cord. However, genetics have been linked in a small subset of familial ALS cases (5-10% of all diagnoses). Additionally, researchers believe there may be a link between ALS and frontotemporal dementia, or that toxin exposure could lead to ALS. Regardless, nerve death causes muscle weakness. Eventually, patients lose their ability to maintain control over their muscles. As muscles in the chest become weaker and weaker, ALS often becomes fatal. Symptoms include:
- Anxiety and depression
- Changes in speech (slowing, slurring)
- Difficulty speaking, swallowing, walking, or holding objects
- Poor posture
- Frequent tripping and falling
- Muscle weakness and cramping
