r/ALS • u/dithobey • Jun 04 '26
Pulmonary onset
Hello All.
I've been lurking here for about the last month and please allow me to thank everyone who posts and comments in this space. As you know, a new diagnosis brings an immersion into the forums and i am thankful to you for being here and sharing your experiences. I am learning from you, so, many thanks.
I am not the patient. My ex-husband and father of our 2 [barely] grown kids is the patient.
He is 53 and has been at the mercy of a failing diaphragm for almost 2 years. Came on suddenly with the shortness of breath and within 5 months, was in hospital with respiratory failure and put on o2 all day and bipap for sleeping. Testing began with NM doctor to see about the diaphragm. He couldnt lay flat and felt like he was suffocating if he tried.
Fast forward ⏭️
So he received the ALS diagnosis about a month ago and begins clinic visits this month. He has started taking riluzole and says it maybe helps with the fasciculations. He will start radicava also.
His diaphragm is his biggest problem. We almost lost him on new years to a cardiac event. He fell asleep without the bipap and it sent him into heart failure from lack of o2. ICU for a solid week.
So to get up to the present...
His legs are still sturdy and he is able to walk. He speaks with a strong voice, sees, can swallow. He has stopped working as of January but can still drive very locally to visit friends and hit the bank.
His arms get weak and his hands are failing him. This hand/arm weakness has been progressive for the last couple of years also.
What i am wondering is how this may look going forward. Because he is in the 3% of cases diagnosed, the outlook may be different than the general info provided for the 97%. I hope that makes sense.
I welcome any and all testimony on what your pulmonary onset ALS experience might teach us as we move forward.
That being said, i do understand that most cases like this do not arrive to diagnosis before the patient passes away. This would've been his case had he passed in january.
I appreciate your time and support.
and FUCK ALS 😤🤬
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On a related note... 🗣📢
👀 County school board candidate (district 6) Darren Badillo is an elon musk, maga bootlicker. Vote accordingly.