Recent content by naxos

  1. N

    My dad is in heaven.

    Sorry Kim.
  2. N

    Thanks skipper66, I appreciate. It really helps to read such messages.

    Thanks skipper66, I appreciate. It really helps to read such messages.
  3. N

    I understand from my experience all the hard times you're going through at the moment. God bless...

    I understand from my experience all the hard times you're going through at the moment. God bless you and be with you!
  4. N

    My dad, my hero

    November 26th 1949 - January 6th 2014, six months after the diagnosed, six months of nightmare.
  5. N

    Intensive care unit

    Could someone one point me to a invasive vent device that can replace the Trilogy 100? Mobility is not a mandatory aspect and the price should be below Trilogy. I've been searching for this information for the last week but I couldn't find anything that would help.
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    Intensive care unit

    Does anyone know where I can buy online an used Trilogy device? Renting it would cost 1150 dollars a month. That's something I can't afford. An used one would be around 5-6000$ I guess.
  7. N

    Intensive care unit

    Thanks for the information you shared. I contacted the company that is renting the vent machines. My father has undergone tracheotomy surgery this morning so the next step would be to find a suitable device. This needs to be tested at the ICU site as nobody knows a specific device that would...
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    Intensive care unit

    They did an invasive vent in the hospital. Nobody knows what to do next as they don't have experience with it. I suggested a NIV at home but they can not say if it's going to work as they don't have experience with such things. All they can and know is to vent him in the hospital at the moment.
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    Intensive care unit

    Thanks a lot for your advices. There is only a small problem: the whole action happens in Romania and there is little experience with ALS and especially with the respiratory onset where the other muscles are still alright (my father drove the car 1 week before the collapse). There is no...
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    Intensive care unit

    My father has been in the ICU for a week now. He was found in acute respiratory failure last Wednesday and since then he's received invasive mechanical ventilation. The doctors here don't have much experience with ALS (that's what they told), especially with this rare ALS form my father...
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    What can we do more?

    If I would describe my father's symptoms in the "Is this ALS?" section I'd probably get a lot of "Is not ALS" answers because he's showing widespread fascinations and can use at ~100% his arms and legs. The fact that he lost 25kg and the breathing problems made him weak and he's not finding...
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    My father has the same symptoms and also lost 20 kg in the last months. What was in your case...

    My father has the same symptoms and also lost 20 kg in the last months. What was in your case? We're trying to rule out als. Thanks.
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    My father has breathing issues and lost 20kg in the last months. What was in your case? We're in...

    My father has breathing issues and lost 20kg in the last months. What was in your case? We're in the process of ruling out ALS. Thanks.
  14. N

    What can we do more?

    I can post some update now that I saw my father after 1 month since he's received the als diagnostic. He's lost around 40 pounds since the beginning of 2013 and looks very weak. But he can walk and use his arms, the only problems are some breathing issues and extreme fatigue especially now when...
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    What can we do more?

    I'll meet my father tomorrow for the 1st time since he got this diagnostic. I'm affraid the way I'll react when I'll see him ... I want to give him some hope and not to cry in front of him.
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