Armed and ready: tackling upper limb function in ALS

ALS is a heterogenous disease, meaning every person living with ALS will be affected differently. In some people, symptoms may start in the hands or feet, while others will experience bulbar symptoms that can first affect speech and swallowing. Since upper extremity function is critical for maintaining independence through social, professional, and leisure activities, Dr. Béatrice Soucy seeks to address how people who mainly experience changes in arm and hand movement have varying preferences and priorities from other people living with ALS. She hypothesizes that by addressing these needs directly, this can have an effect on quality of life and symptom management for this population.

In her work, Dr. Soucy will first analyze the existing research landscape on upper extremity ALS and its management, identifying main issues and available therapeutic options. She will also conduct semi-structured interviews with people living with ALS to understand their goals and priorities in disease management. Her research will help design and implement new care pathways for these individuals that aligns with their priorities. With the support of this fellowship, Dr. Soucy will also contribute to both ALS clinics in Montréal, and she ultimately aspires to master ALS rehabilitation care and properly address the needs of people living with ALS.

Through the ALS Canada Research Program, Dr. Gordon Jewett, Dr. Soucy’s supervisor, was a recipient of the 2020 Mitsubishi Tanabe Pharma Canada Fellowship, with the research project titled “Prediction of change in ALS disease state by tracking movement with wearable sensors.” Dr. Jewett is now an established clinician researcher that has shown incredible engagement with the CALS network and the ALS community, mentoring the next generation of promising early career researchers working in ALS.