Recent content by Handmaiden

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 Max & Sandy, Yes we did reach out to ALSA and they referred us to MDA for further action.

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...

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...

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...

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...

Hi friends, We have one week from today before we go back to the neurologist for the results of the spinal tap as well as the diagnosis. My brother's recovery from the spinal tap was a lot tougher for him than he had expected - severe headaches. The doctor prescribed some meds for him to help...

Ann, talking to his doctor is a great idea. I would love to be able to do that without him knowing, as when I ask questions I think it is upsetting for him. Still doesn't want to hear ALS, not till the doctor says there are no more tests. I may try to call the office to see if I can arrange a...

Spinal Tap done today. We are now scheduled to go back, yet again on january 13th to get the results of the spinal and I am assuming the final diagnosis. My brother is very angry about the possibility of ALS and even mentioning it, and asking the doctor questions seems to be making it harder...

My brother had his follow up appointment today to get the results from his cervical/throacic MRI and all his blood work. Results - Negative. I did ask his neurologist how many more tests - she said "just one more" - the Spinal Tap - she said she it would show whether his protein levels were...

Anne - thank you thank you for checking your files. Such helpful information. I can only assume that with all the blood work he has had that he was also checked for some of these other things you mentioned. I pray you are right and that the spinal tap and respiratory will give the doctor...