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    End Stages...just got more complicated

    Barbie......we had a two hour initial consultation with the doctor who said he would do the surgery, only to find out today, after receiving his medical notes from his neurologist that he will no longer do it....no explanation. We did speak with my brothers respiratory therapist (who works...
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    End Stages...just got more complicated

    Hi Max & Sandy, Yes we did reach out to ALSA and they referred us to MDA for further action.
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    End Stages...just got more complicated

    Hi friends, To recap previous information I have posted about my precious brother.... My brother was diagnosed with bulbar ALS in January 2011. He has been on a feeding tube since June 2013, unable to speak since May 2013 and has been on a non invasive ventilator (Trilogy) for about 8...
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    Non Invasive Ventilation vs Tracheostomy

    Gil - that is the same thing that my brother is experiencing. When he was first diagnosed he had a DNR on file and once he reached the point he is currently, his thoughts towards a trach have definitely changed. Also - I didn't realize hospice can only be approved if the doctor thinks you only...
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    Non Invasive Ventilation vs Tracheostomy

    Thank you igelb, ECpara, Max, Barbie, Greg, Diane, Nikki and affected....So much good information to consider. My brother currently does have two different face masks...hadn't thought about alternating them and also including the foam pads. I had never heard about being "locked in" where he...
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    Non Invasive Ventilation vs Tracheostomy

    Hi Friends, It has been so very long since I have posted anything, and my brother is now close to 4 years since his diagnosis of bulbar onset ALS. He went from slurring his words, to feeding tube, unable to speak, unable to walk, wheelchair, bipap and for the past 4 months requires the use...
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    ALS Support Group....Seriously?

    Fran, and friends, I can't tell you how nice it was to hear from the heart of someone who is actually a facilitator. Thank you - thank you. I have to remind myself how important it is to have all the information so that we are not caught "unaware" by things my brother is facing. I know you...
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    ALS Support Group....Seriously?

    Hi friends, I know it has been awhile since posting. So much has happened since my brother first received his diagnosis. We went for a second opinion - same diagnosis was given. The second doctor actually told my brother.....What you are dealing with is very serious - if there is anything...
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    Diagnosis and What's Next

    Thank you thank you so much. This is the information I was looking for David - thank you for looking up and providing the links for the ALS/MD locations in our area - that was so helpful. I now have clearer direction about our help resources. Your amazing to have done that and I am very...
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    Diagnosis and What's Next

    My brother had his appointment with his neurologist yesterday to go over the results of his spinal tap (the last test, after a year long testing process). The results of the spinal tap - Negative. The diagnosis - Bulbar Onset ALS. The neurologist explained that he was in a category called...
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