niravshah81
New member
- Joined
- Aug 30, 2017
- Messages
- 1
- Reason
- Loved one DX
- Diagnosis
- 10/2016
- Country
- Ind
- State
- MAHARASHTRA
- City
- MUMBAI
Hi All,
My father passed away on 8th Aug 2017 from ALS. I am writing this for others who may find our experience helpful.
We live in Mumbai, India. My father showed symptoms for ALS since Feb 2016. Initial symptoms included weight loss, weakness, lethargy (especially in the morning) and difficulty in closing shirt buttons. We visited a couple of doctors but they attributed it to early onset of Parkinson. By end of Oct 2016, his symptoms were clear for doctors to diagnose ALS (after going through a large number of tests to rule out everything else). At this point, he was facing slight difficulty in breathing, general lack of stamina (would get tired very fast) and bit issues in speaking or swallowing. By Jan 2017, his breathing deteriorated and he started using Bipap all through the night and few hours during the day. Till this point he was following a normal routine as much as possible. He even went to work for a few hours each day. From Feb 2017 to June 2017, there was gradual deterioration in his health (especially breathing). He was still able to speak, swallow and travel occasionally. He was completely mobile in the house and was able to take care of himself. Since July 2017, his breathing became increasingly difficult without the Bipap machine. His weakness had increased and swallowing and speaking was getting difficult. All this time, his oxygen (O2) levels were ok and above 90. Then suddenly on 4th August he faced intense air hunger. He was agitated and was unable to breathe even with the Bipap machine. His O2 levels were low and we rushed him to the emergency room. It was his wish to not be put on the ventilator so the doctors put him on the Bipap machine with doses of O2 and morphine to keep him comfortable. Over the next 4 days, my mother and I did not leave his side in the hospital. He was conscious and ready to leave. While always difficult, we got our chance to say goodbye. The night before his passing, he slept for 10 hours straight while waking up only once for the bathroom. We realized it was CO2 building up. The morning of 8th August, he was in deep sleep. He was facing difficulty in breathing even with the BIPAP and O2 at full force. The doctors tried to wake him up but he wouldn’t wake up. The entire family had gathered together fearing the worst. Finally he woke up at 10am from his sleep like any regular day. He interacted with all of us (through gestures) and asked for my daughter to be brought from school to the hospital. He spent beautiful 30mins with her and they also did their favorite puzzle together in the newspaper. Finally at 3pm he passed away peacefully in his sleep. The last 10 months were very difficult for him and the family. But it got all of us together. My mother has been the pillar of strength for him and us throughout this period.
Thank you all here for your posts and information. This forum has been extremely helpful to us through our journey in ALS.
My father passed away on 8th Aug 2017 from ALS. I am writing this for others who may find our experience helpful.
We live in Mumbai, India. My father showed symptoms for ALS since Feb 2016. Initial symptoms included weight loss, weakness, lethargy (especially in the morning) and difficulty in closing shirt buttons. We visited a couple of doctors but they attributed it to early onset of Parkinson. By end of Oct 2016, his symptoms were clear for doctors to diagnose ALS (after going through a large number of tests to rule out everything else). At this point, he was facing slight difficulty in breathing, general lack of stamina (would get tired very fast) and bit issues in speaking or swallowing. By Jan 2017, his breathing deteriorated and he started using Bipap all through the night and few hours during the day. Till this point he was following a normal routine as much as possible. He even went to work for a few hours each day. From Feb 2017 to June 2017, there was gradual deterioration in his health (especially breathing). He was still able to speak, swallow and travel occasionally. He was completely mobile in the house and was able to take care of himself. Since July 2017, his breathing became increasingly difficult without the Bipap machine. His weakness had increased and swallowing and speaking was getting difficult. All this time, his oxygen (O2) levels were ok and above 90. Then suddenly on 4th August he faced intense air hunger. He was agitated and was unable to breathe even with the Bipap machine. His O2 levels were low and we rushed him to the emergency room. It was his wish to not be put on the ventilator so the doctors put him on the Bipap machine with doses of O2 and morphine to keep him comfortable. Over the next 4 days, my mother and I did not leave his side in the hospital. He was conscious and ready to leave. While always difficult, we got our chance to say goodbye. The night before his passing, he slept for 10 hours straight while waking up only once for the bathroom. We realized it was CO2 building up. The morning of 8th August, he was in deep sleep. He was facing difficulty in breathing even with the BIPAP and O2 at full force. The doctors tried to wake him up but he wouldn’t wake up. The entire family had gathered together fearing the worst. Finally he woke up at 10am from his sleep like any regular day. He interacted with all of us (through gestures) and asked for my daughter to be brought from school to the hospital. He spent beautiful 30mins with her and they also did their favorite puzzle together in the newspaper. Finally at 3pm he passed away peacefully in his sleep. The last 10 months were very difficult for him and the family. But it got all of us together. My mother has been the pillar of strength for him and us throughout this period.
Thank you all here for your posts and information. This forum has been extremely helpful to us through our journey in ALS.
