Waldmeister
New member
- Joined
- Jul 19, 2020
- Messages
- 2
- Reason
- Loved one DX
- Diagnosis
- 10/2019
- Country
- CH
- State
- ZH
- City
- Zürich
Dear members of this forum,
English is not my mother tongue, so I beg you pardon if I write something wrong. i am here because of my mother (61 years old), short facts:
beginning of 2017: slurred speech, no reason for this was found in hospital on an neurological station
middle of 2018: hospital because of difficulties with her hearth - 10 percent of the normal cardiac output, not clear whether she would survive the night, but she did. cardiac output is nearly normal now. Speech got worse, I could hardly understand her in hospital
middle of 2019: she fell without reason from bike and in a shop. startet to walk stiffly with one leg, diagnosis of a probable "ALS", although it might also be "just" a PLS
Christmas 2019: mother is unable to walk freely around the house, falls very often
July 2020: She needs a wheelchair, much saliva, eats very slow and lost a lot of weight. speeching computer will arrive next month.
I have to say I do live about 500 km awy from my mother, but try to visit her every month. She lives with her husband.
Well why am I here...There are so many questions, but I want to start with one. Last night she textet to me in the middle of the night on "Whatsapp", that she had to cough so much and could not sleep because of this. I know they have some kind of aspirator at home, but did not have use it, yet. Her husband CAN use it, because he worked at a hospital. But she did not want to wake him. I did some research in the middle of the night and now I wonder: Is the coughing because she can not swallot OR because she cannot breathe? I am afraid now that it might be the breath. Usually she does not have any breathing problems during the day, it seems. And I found information that you can not do a non-invasive ventilation if someone had a bulbar oneset. Is this true?
Another topic that does not stop to occuly the my mother's mind is the question about the "WHY". I know I won't find any answer, because it is not possible. Now there was someone who tested the electro-smog and found out, that a telephone produced a lot of emissions. Now she thinks this is the reason for her disease besides eating to much "glutamat". I do not know how to react then. Maybe it is easier for her to accept that there might be a reason. On the other hand she still struggles with the diagnosis. She claims there had been much improvement last year and also in the beginning of 2020. From afar I could not see any of these improvement. BUT after her hearth failure she got a medicine called "Amiodaron", which maybe made some symptomes worse?
I am sorry, I know i wrote more than my initial question... I would be happy about any feedback!
English is not my mother tongue, so I beg you pardon if I write something wrong. i am here because of my mother (61 years old), short facts:
beginning of 2017: slurred speech, no reason for this was found in hospital on an neurological station
middle of 2018: hospital because of difficulties with her hearth - 10 percent of the normal cardiac output, not clear whether she would survive the night, but she did. cardiac output is nearly normal now. Speech got worse, I could hardly understand her in hospital
middle of 2019: she fell without reason from bike and in a shop. startet to walk stiffly with one leg, diagnosis of a probable "ALS", although it might also be "just" a PLS
Christmas 2019: mother is unable to walk freely around the house, falls very often
July 2020: She needs a wheelchair, much saliva, eats very slow and lost a lot of weight. speeching computer will arrive next month.
I have to say I do live about 500 km awy from my mother, but try to visit her every month. She lives with her husband.
Well why am I here...There are so many questions, but I want to start with one. Last night she textet to me in the middle of the night on "Whatsapp", that she had to cough so much and could not sleep because of this. I know they have some kind of aspirator at home, but did not have use it, yet. Her husband CAN use it, because he worked at a hospital. But she did not want to wake him. I did some research in the middle of the night and now I wonder: Is the coughing because she can not swallot OR because she cannot breathe? I am afraid now that it might be the breath. Usually she does not have any breathing problems during the day, it seems. And I found information that you can not do a non-invasive ventilation if someone had a bulbar oneset. Is this true?
Another topic that does not stop to occuly the my mother's mind is the question about the "WHY". I know I won't find any answer, because it is not possible. Now there was someone who tested the electro-smog and found out, that a telephone produced a lot of emissions. Now she thinks this is the reason for her disease besides eating to much "glutamat". I do not know how to react then. Maybe it is easier for her to accept that there might be a reason. On the other hand she still struggles with the diagnosis. She claims there had been much improvement last year and also in the beginning of 2020. From afar I could not see any of these improvement. BUT after her hearth failure she got a medicine called "Amiodaron", which maybe made some symptomes worse?
I am sorry, I know i wrote more than my initial question... I would be happy about any feedback!