Recent content by SanNicolas

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    My wife Jasia passed away on March 3rd, just before this pandemic was a reality for all of us. I was out of the country when this happened and I was unable to be at her funeral (for travel restrictions mostly). Today, five years ago we got married. It was also around that time that she got...
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    Swollen upper lip

    I can't rule it out, but it does not seem like that is the cause. Her jaw muscles are weak, so very often her mouth is open (since she is unable to close it). It might be that. I was just wondering if anyone here has had any similar experiences.
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    Swollen upper lip

    For a few days now, my wife wakes up every morning with a swollen upper lip. She has a trach for more than a year now, so there's nothing touching her lip during the night. I wonder if anyone else has a clue about this, there seem to be no other symptoms (i.e., not swelling in other places, no...
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    Behavioral changes

    My wife was diagnosed two years ago, and the progression has been quite fast. Right now she is almost completely immobile, has a PEG and a vent since a little more than a year. She used to be really smart, both in the academic and the emotional sense, had a great sense of humor, and used to be...
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    My wife also talked/threw punches etc. in her sleep often prior to diagnosis. She also grinded her teeth a lot. I have no idea if these things can be related, but it is interesting to see that others had the same.
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    A podcast about a PALS

    Hello, I came across this episode of a podcast that I sometimes listen to, in this episode they interview a young ALS patient: The story starts around 16 minutes in. I would love to hear your impressions about it.
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    Vent and trach

    My wife was trach´d in April, and had the PEG since November of last year. She is now almost 24/7 on the bed. She has not lost a lot of weight recently, but has severe constipation problems.
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    Don't mean to hijack...

    I have also feel that at times I am not as afectionate as I could be to my wife. I feel that this is because, as the main caregiver there are already a lot of things that I have to do for her (including handling -for lack of better terminology- multiple body secretions), to on top of that being...
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    Losing myself

    When my wife was diagnosed, I did some research about this disease and the first thing that you learn is that "The average survival from onset to death is three to four years". Of course this does not cover the fact that if the patient is ventilated and feed thru a tube, they can live many more...
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    no words

    Sorry to hear about your wife. I don´t have a lot to contribute, but I can relate of having a (relatively) young wife affected by this disease.
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    Riluzole side effects

    My wife started taking it, also had extreme fatigue (at the time we did not know if it was a normal symptom of ALS at that stage). After some blood test, it turned out that the drug was causing her damage to the liver, so it was immediately suspended. This is a reported side effect of Riluzole...
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    Outside help/paid care aid

    We just got a nurse to be 2 hours a day every day. She seems to be not familiar with the disease, but I´m not surprised. Basically she´ll be here so I can go out a bit (I´m the main caregiver). It seems to me that 2 hours is not a lot of time, considering that the rest of the day I´m constantly...
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    Medical marijuana

    Thanks for your posts. As it happens, my wife has ruled out MM completely. Her main problem right now is the breathing and the swallowing a closer second. It also does not help that in Poland "illegal" substances are not seen favorably. I still think that there is some value in these...
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    Medical marijuana

    My wife's neurologist did not recommended the use of MM because she thinks that the muscle relaxation can be problematic specifically to the muscles involved in breathing. I understand that the use of MM basically aims to give some relief with problems related to spasticity and cramps, but have...
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    New to forum

    Thanks Tille, I've been reading posts for some time now, in order to learn as much as possible.