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ALS onset with effect on breathing first
Who on this forum has onset of ALS which impaired breathing function first and how it has declined over course of disease. My husband is recently diagnosed and is able to walk, talk and speak and breath okay in sitting standing position but can not lye on back without bipap machine
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2 Replies
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My twin who passed away had a definite affect to her stamina. She was an avid hiker. It first was noticeable that something was amiss when she could not get her own home to stay clean…she needed my help 3 years before she died for cleaning work. I ran a cleaning business so I would bring my gear, we would have fun for a few days and I would clean her home. She got winded sooner on hikes so I feel like I can say yes, it was her first symptom but we didn’t recognize it as such. She was very high functioning until her last 10 months. She never sought a Drs help til her last 3 months and got her formal diagnosis. Fear in this case resulted in denial and homeopathic care that was not beneficial in helping her. I am her fraternal twin and have no symptoms at this time. I have not had genetic testing but my daughter and niece both have with no markers present. I just have to be vigilant in my own health and watch for symptoms at this point. I am hoping my insurance will approve a genetic test.
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I have a trunk onset ALS, which was diagnosed in 2016. It seems that many practitioners have not seen this onset. Are you in the USA? My breathing declined rapidly, and I was on my way to a ventilator in 2017.  Despite recommendations from some doctors not to proceed, I received a diaphragm pacer implant in 2017, and it still works today. Outcomes differ greatly, but it is definitely worth investigating and having a consultation. Dr. Onders at University Hospitals in Cleveland is the inventor and he has licensed and trained surgeons that can perform the surgery in other locations.
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My wife has bulbar ALS and was diagnosed in 2018. Her speech and breathing were impacted right away. Fortunately she is still breathing on her own but she cannot lie down so she always sleeps in an inclined position. We believe one of the key factors for maintaining her ability to breath is a therapy she has been receiving since June of 2019 through the Healey Center”s expanded access program at Mass General. If you would like more information about that, please send me a private message.
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I have a trunk onset ALS, which was diagnosed in 2016. It seems that many practitioners have not seen this onset. Are you in the USA? My breathing declined rapidly, and I was on my way to a ventilator in 2017. Despite regm pacer implant in 2017, and it still works today. Outcomes differ greatly, but it is definitely worth investigating and having a consultation. Dr. Onders commendations from some doctors not to proceed, I received a diaphraat University Hospitals in Cleveland is the inventor and he has licensed and trained surgeons that can perform the surgery in other locations.
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