Thank you for the information, this information validates my experience. I was diagnosed early 2022. I formed a team for the ALS walk in 2022 and named the team “Follow your Bliss” with the team motto “Smile Often”. People commented regularly that I seemed so positive. I admit I wasn’t always positive— had many nights awake and even weepy as…

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Hi Len. They calibrated the machine for my needs and suggested I begin by using the machine twice a day, once in the morning once in the evening. There are 5 sets of 5 repetitions morning and evening. It takes very little time, a couple of minutes depending on how long you rest between sets. I have not been resting but maybe 5-10 seconds. Talk… Read more

Hi everyone. Great information. I was diagnosed with respiratory onset ALS last July. My voice was affected in that I could not be heard unless in a quiet room and if I tried a long sentence I became breathless. I have been on NIV with oxygen at night for several months. I recently asked my respiratory therapist to train me on an airway… Read more

Excellent discussion. Our providers need to listen to us. I suggest reading Being Mortal written by Atul Awande. This book explains the importance of the medical team (and others) listening to the patient. I found it empowering.