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...
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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bulbar als
confusing
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information
insurance
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stages
surgery
tracheostomy
trilogy
ventilator
work
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...
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...
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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feeding
feeding tube
hawking
hospice
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tracheostomy
trilogy
ventilator
wheelchair
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...
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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coughing
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cramping
crying
death
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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...
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...