Each month, a member of the Chapter’s experienced care team answers three questions about ALS and their role in supporting ALS families.
May is ALS Awareness Month. What aspects of ALS do you think the public should be aware of regarding ALS and the care available to ALS families?
The public should know that ALS can begin differently in each patient. The symptoms can begin with difficulty with speech or swallowing, weakness in an extremity, difficulty breathing and at times cognitive or behavioral changes.
Patients and their families can receive the best care at certified ALS Treatment Centers. These clinics provide support and guidance for managing the symptoms of ALS patients. It is a multidisciplinary structured clinic so the patient can see a variety of specialists that can address their needs at each visit. The goal is to provide education to the patient and family so the impact of the disease maximizes their quality of life. Studies have shown that attending a multidisciplinary ALS clinic the quality of life of the patient improves, their life extends, and they have access and awareness to the latest research.
May is National Nurses Week. How do you and other nurses care for ALS patients and their caregivers during a visit to an ALS treatment center?
The ALS nurses develop a relationship with our patients that begins on their day of diagnosis. When we see them again at their clinic appointments, we most likely have communicated with them multiple times by email, text, or phone calls. Symptom management as the disease progresses is our main goal. Nurses discuss all our findings with the physicians and other disciplines. The specialists discuss a treatment plan which is then communicated by the nurse. The nurse’s role is to coordinate the patient’s care in and outside of the clinic.
What questions should people ask when attending a clinic appointment at an ALS treatment center so that they can be best prepared as symptoms progress?
Patients have their breathing tested, weight monitored, and a functional rating score measured. These measurements can predict what areas ALS is affecting and at what rate. Asking about these scores can help the patients and caregivers know what to expect next.