My mum - ALS and difficulties during the night

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Waldmeister

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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!
 

Nikki J

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I am sorry about your mum. I know it is very hard especially at a distance.

asking why is very very common. It seems as if there should be a reason for this terrible thing. Only those of us with familial ALS have a sort of answer. For everyone else the truth is they probably have a mild genetic predisposition that only activated because they were exposed to several triggers in their lifetime.

i suspect the cough is related to swallowing issues. And certainly people with bulbar disease can use non invasive ventilation. Cough may be related to inability to handle saliva and phlegm or perhaps she is aspirating food. The solution depends on the cause
 

lgelb

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Amiodarone risks increase the longer one takes it. I would urge her to seek an opinion with a second cardiologist.

I'm sorry she is going through this. If she does not have a BiPAP, I would look into that as well, and to come to an agreement with her husband that when she needs suction urgently, she will wake him up. But if she receives it before bed and uses BiPAP effectively, it is more likely that she can sleep through the night.
 

Waldmeister

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Thank both of you!

@to be honest I somethimes have short "attacks" of being afraid there could be a familar background, but as her parents died with 70 (diabetes) and her father with 86 without any ALS-Symptoms, this should not be the case. i am relieved that non-invasive ventilation might be a possibility and I will speak with my step-father about this.

@Igelb: She stopped taking Amiodoron several weeks ago. Her hope was, that the medicine was causing the nerve damage, but now since 2 or 3 weeks she knows, that cannot be the case anymore. Realizing this seems to speed up the disease in some way...

Another issue... I know problems with the bladder are not usually linked to ALS. But with my mom it's something she seems to have problems with. Usually she seems to have to go a few times to the toilet during the night, which is a great effort for her.. But if day or night, sometimes she is too late and wets herself just half a metre before the toilet. Has anyone heard about such problems? It is not only that she is too slow, because she just has this problem around 1 or 2 metres around the toilet. It would probably not happen while she sits in a car or has to "walk" 15 metre to the toilet, it happens very shortly before. Maybe it's something in her mind, a kind of stress?
 
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