Monitoring and supporting respiratory function is a critical aspect of ALS care. ALS (Amyotrophic Lateral Sclerosis), is a progressive nervous system (neurological) disease that destroys nerve cells and causes disability. As the disease progresses, most patients experience shortness of breath and respiratory insufficiency at night. Inability to clear secretions can lead to discomfort and increased susceptibility to lung infections.
The addition of respiratory therapy, physical therapy, and respirology has been an essential part of this newly formed team. During clinic visits all patients receive respiratory testing which determines the nature and extent of breathing dysfunction.
The last year has seen tremendous growth in the ALS/Motor Neuron Disease clinic in Saskatoon. Our goal is to provide a patient centered approach and excellence in care. We are excited to share some of the highlights with you!
The addition of services available to patients in clinic over the last year includes:
- Clinic Coordinator – Raelyn Gossen
- Speech Language Pathologist – Brigette Hofmann
- Physical Therapist – Robyn Chura
- Respiratory Therapists – Adam Buettner and colleagues
- Neurologist – Dr. Kerri Schellenberg
- Respirologists – Dr. Richard Nataraj and Dr. Jordan Olfert
- Dr. Gary Linassi is joined by Dr. Brenda Joyce to provide continued service from Rehabilitation Medicine (Physiatry)
A group of practitioners working together in clinic this way is called a “multidisciplinary team.” This approach to care has been demonstrated in the medical literature to provide a number of advantages for patients with ALS. This includes: improved quality of life, longer survival, fewer hospitalizations, better access to equipment and interventions (such as non-invasive breathing supports, feeding tubes, and medications). This coordinated approach also means that patients can be evaluated by a variety of practitioners with expertise and experience in ALS/Motor Neuron Diseases at a single clinic visit.
Monitoring and supporting respiratory function is a critical aspect of ALS care. As the disease progresses, most patients experience shortness of breath and respiratory insufficiency at night. Inability to clear secretions can lead to discomfort and increased susceptibility to lung infections. The addition of respiratory therapy, physical therapy, and respirology has been an essential part of this newly formed team! During clinic visits all patients receive respiratory testing which determines the nature and extent of breathing dysfunction. If the cough strength is diminished, patients are taught lung volume recruitment exercises and given cough assist machines. These interventions have been demonstrated to improve cough strength in neuromuscular disease. If patients are determined to have breathing dysfunction at night, then non-invasive breathing support (Bipap) is offered if appropriate for the individual. In ALS, use of Bipap has been shown to slow the progression of respiratory dysfunction, prolong survival, and also improve quality of life! The fact that this can all be determined and implemented at a single clinic visit (while also seeing other ALS/MND specialists) means that patients have “one stop shopping”. The aim is for patients to receive more timely access to respiratory support. Feedback from patients has been tremendously positive!
There are also a number of new and continuing research projects at the clinic. Examples include participation in a national neuromuscular registry, blood sample collection, surveys, and interviews. Thanks to those who have participated! We value your thoughts and ideas. We are always happy to answer any questions about ways that patients and family members can be involved in new and ongoing studies.
The number of patients seen at clinic over this last year has more than quadrupled. I see this as a great success. There are growing pains with every new endeavour, and we appreciate the support we have received from our patients, their family members, the ALS Society, administrators, and partners within the health region during this time of transition. As we build on the dedicated work of physicians previously in clinic, we strive for continued growth in the number and quality of services we provide.
Kerri Schellenberg (on behalf of the ALS/MND team)
MD, FRCPC, MMedEd, CSCN Diplomate
Medical Director, ALS/MND Clinic
Medical Director, RUH EMG Laboratory