Recent content by crosado8

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    Newly Diagnosed.

    bulbar palsy is that the same exact thing as bulbar ALS? My husband has Bulbar ALS.
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    home healthcare?

    You don't live to far from me Angela, I live in Kentucky . My husband has Bulbar ALS . I would train some friends so when you need that break and such they can step in. Maybe put ad in paper for that extra private care when you need it. Lots of people look for sitting with people in there...
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    Scared to Pieces ...

    Tweeka, are you on any meds? Do you have thyroid issues? Did the neuro do any test such as EMG'S or strength test? Anixety can really play crazy tricks on the body! I started twitching all over my body a little over a year ago and i jumped up in such fear! My twitches started all over my body...
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    To those with ALS, what do you think was the cause?

    My husband has bulbar ALS he was diagnosed in March 2012 and by July 2012 he was put on the vent. Right now the only thing he can move is his eyes! You ask what we think might cause ALS I personally think "medications" especially ones for depression and psychotic ones. I think thats what caused...
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    quadbliss how are you doing on a vent? How long have you been on a vent? My husband was...

    quadbliss how are you doing on a vent? How long have you been on a vent? My husband was diagnosed with ALS March 2012 and was put on vent July 2012 he has Bulbar ALS. I wonder whats the longest someone has lived with ALS on an vent? Carolyn
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    He went in for coughing in July 9th 2012 AND To this day oct 13th he is still in the hospital...

    He went in for coughing in July 9th 2012 AND To this day oct 13th he is still in the hospital. His Neuro did not want me to give him a feeding tube or any type of life support. I fired him and had to get congress involved. If anyone else on here has bulbar ALS or on a vent can you share with...
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    He had already had nothing by mouth for 5 days! anyways my daughter has two colostomies so when...

    He had already had nothing by mouth for 5 days! anyways my daughter has two colostomies so when i took her home to change her thats when they took him from a regular room to icu and that when our nightmare really started and thats also when the RN said that his rowdiness and anxiety is what got...
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    off! When i left the hospital my husband was in a normal room before i could get back they call...

    off! When i left the hospital my husband was in a normal room before i could get back they call me and say he was taking to ICU and if i wanted to have him put on a ventilator or let him die ! I was shocked because he had just got back to his room from a muscle biopsy and it would take 3 to 4...
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    Then when he went to Neuro he showed me the muscle loss in his hands and he progressed quickly...

    Then when he went to Neuro he showed me the muscle loss in his hands and he progressed quickly and became total upper body paralyzes his breathing was affected but before breathing he had issues of choking and swallowing. I'm just wondering is his bulbar forsure or another form of ALS? He can...
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    I finally told them the main thing right now is get my husband home and have quality time with...

    I finally told them the main thing right now is get my husband home and have quality time with him and love him and get our family back to normal as it possibly can. i found this forum in hopes to get support and give support as this is all new to us and a road that we had no ideal we would have...
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    It has been a long road and many tears shed from my husband and me and our children. his VA...

    It has been a long road and many tears shed from my husband and me and our children. his VA primary care doctor was upset because i demanded they give him a feeding tube and the Neuro also said it was all a form of life support! Can you believe they just wanted me to let him die! They will save...
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    I have been trying ti get him home for a longtime now I actually had to get the Congress...

    I have been trying ti get him home for a longtime now I actually had to get the Congress involved it's been rough and very stressful but finally VA is doing what they should of been doing a longtime ago. Plus the PVA put in for me to be his payee and I told them that his brain is not affected...
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    My husband has Bulbar ALS and is on a vent and in a long term hospital but we are in the process...

    My husband has Bulbar ALS and is on a vent and in a long term hospital but we are in the process of bringing him on on a portable vent and he should be home by the end of the month we are so excited! I have lots of questions and thoughts that just flood my mind and I was finally after 6 months...
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