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I am still here

ARCG. Thank you for the reply. Our home is brand new and built to be disabled compliant. We did this with the help of the Veterans Administration Special Adaptive Housing grant, which I was qualified for as 100% disabled. And our life savings. I will hopefully be released home with the trach but...

I was trach and vented during a nasty dealing with pnemonia last Wednesday. I-am currently in a process to get weaned from vent and arrange home health care with VA. I have a Trilogy and my home is fully disability prepared. Roll in shower, etc. I am seeking advice and guidance on being at home...

My wife and I just completed the first step in the program, which is a lengthy telephone assessment of my need and her willingness and capability it was straightforward questions regarding my need of a caregiver and her experience and capabilities. Of course with the standard questions about...

Debwilson77, thanks very much for your post. I will provide feedback after our assessment next Tuesday

Hello All, My wife applied October 1. We got a phone call today from VA to schedule a telephone call assessment of both me as pALS and her as caregiver. They said a 2 hour call! Have any of ya’ll been through this? It would be great to get information on what to expect. Thank you, Tom

I was diagnosed 12/13/2019 with bulbar onset ALS. I had experienced an extreme weight loss from 162 to 118.6 pounds in 8 months. Looking back at symptoms now, it seems like 03/2018 I had a voice change and started minor drooling. The day after diagnosis I had a feeding tube installed. I have...

Hi ya’ll, Tom here in TN. I was diagno on Dec 13, 2019 with bulbar onset ALS. I had lost a significant amount of weight and could not swallow food at all. Had PEG surgery next day and suffered respiratory failure in the OR Which resulted in a tracheostomy. So far I have lost speaking ability...

Hi all, I was diagnosed December 2019 with bulbar onset ALS. I am now on PEG feeding. I am bing treated by an ALS clinic at Vanderbilt in Nashville. i will be using this forum for information. Thanks Tom