Recent content by Pooja Dhamor

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    As an update, basis what you taught me on my thread, I increased his breath rate from 16 per...

    As an update, basis what you taught me on my thread, I increased his breath rate from 16 per minute to 18 pm. He is feeling better. In hindsight, I feel stupid for panicking.
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    Hi Laurie, tx for your help on my thread. As an update, my dad's Trilogy machine has now been...

    Hi Laurie, tx for your help on my thread. As an update, my dad's Trilogy machine has now been replaced with another machine: Oricare V8600. Ever since he has been shifted to this new machine, he isn't feeling comfortable breathing even with the same settings. Idk how to PM, this is the closest I...
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    My father was rushed to the hospital

    Thanks Mary and Igelb, my father doesn't have pneumonia. We had to get him admitted again and this time he got his tracheotomy done (which is connected to Philips Triology ventilator). He is far more comfortable breathing now.🧿🤞 He has currently been put on SIMV mode. We are so lost around...
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    My father was rushed to the hospital

    Hi, sorry for the delay in response. The team has been giving antibiotic injections, yes. We did have x-ray done at both the hospitals - however, nothing unusual was highlighted to us by our doctors who read those x-rays. He still doesn't look v comfortable, but feels that he is in a far better...
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    My father was rushed to the hospital

    As an update, he was moved from the previous hospital to a different hospital (given that they seemed clueless and we felt that the care provided was not adequate esp given he needs a close family member to communicate his needs and no attendant was allowed with him at all). After taking him to...
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    My father was rushed to the hospital

    Hi, my father was diagnosed with probable ALS in October 2021 - this diagnosis was later confirmed. He has been on Riluzole since October 2021. He has lost complete mobility in upper limbs and has been having breathing, swallowing and speaking problems (among other issues) for quite a few...
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    Tonabersat

    This is helpful, thank you!
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    Tonabersat

    I came across an article discussing a recent Johns Hopkins study (29 March 2022) - Potential window for treating ALS identified and Cx43 hemichannels contribute to astrocyte-mediated toxicity in sporadic and familial ALS which talks about Tonabersat being a prospective drug for ALS. On a little...
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    EMG abnormal | MND being considered | long waiting period

    Thanks Laurie, there haven't been any injuries, nor does he have any history of manual labor. I'm not sure what do you mean by trauma - if it's long term stress, then yes, that's there. I'll check the link containing info on more proven treatments, thank you so much!
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    EMG abnormal | MND being considered | long waiting period

    Thank you for your responses. I am sorry for the delay in response because of the restrictions of not being a forum supporter. To reply to Laurie's questions, my father is not diabetic, doesn't smoke and neither does it consume tobacco in any other form. I am also attaching the other table, if...
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    EMG abnormal | MND being considered | long waiting period

    Thank you for the information! It has been difficult. If it is probable ALS since it doesn't meet the criteria for ALS yet, there's a likelihood that it might turn out to be something else/curable in near future, right? I'm sorry if I'm being nagging but I'm just being hopeful and trying to look...
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    EMG abnormal | MND being considered | long waiting period

    Hi, I am from India and my father (aged 48) started experiencing difficulty in lifting things this Feb/March 2021. This difficulty in doing normal things like buttoning, opening wrappers, signing, writing, combing, etc. kept on increasing gradually. Starting from August/September, we noticed a...
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