[Ed]

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 I thought about the future and the need to make final arrangements. My breathing capacity had gone from 96% to 60% and I thought I was on the ALS express train. I remained positive enjoying the “small” things in life like the first sip of coffee, listening for the first bird to chirp, etc.

But introduction of a BiWaze air clearance system resolved my partially collapsed lungs. I have now been told by my doctors that the ALS is progressing slowly. I continue to enjoy life’s simple pleasures and have noticed that others living with ALS remain positive despite not being able to move around with their own power.

I am not saying it is easy but prayer, faith and remaining positive seem to have helped.

[Ed]

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 to your RT about it. Best wishes. Ed

[Ed]

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 clearance system I had been prescribed in case I needed to cough up something that was in my lungs. My therapist recently explained that cough assist was not the only value for the machine—that it would also help with the lower lobes of the lungs by recruiting and clearing the alveoli. Bottom line after using the machine for about 4 days my voice returned. I discovered that a CT Scan last September of my abdomen for purposes of tube placement revealed the lower thorax and the finding of bibasilar atelectasis. I recently had a CT Scan of the lungs and am anxious to see if this has cleared up which might explain the return of my voice and a little less breathless during exertion, i.e. showering and dressing. May be worth an inquiry if you are not using an airway clearance system and the problem with the voice is inaudibility.

[Ed]

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.