Hi Everyone, my name is Juri. I have been living with ALS for 12 years now, and I had been gone from this site for about ten years, and during that period of time my FRS dropped from 23 to 1. I am on vent 24/7 (with the use of tracheotomy), I use an eye gaze computer for communication, and I...
I would like to figure out what is going to be the financial side of my dad's illness. My dad has a very good PPO insurance in Illinois, and so far all of his treatments were covered ( when they were approved by insurance. The insurance has only rejected his spine MRI once).
My dad got his tracheotomy and ventilator a little over 2 weeks ago. When we were at the hospital, he was doing fine adapting to it. His heart rate was around 70-90.
However, we just moved to a nursing facility that has a subacute section and the first week, he was doing fine. But in...
I have never posted here, but certainly have used the forums for getting advice for everything! I appreciate everyone here who takes the time to help those with ALS and us CALS. My husband was diagnosed in Nov. 2013. Limb onset at 48 years old. He's done pretty well for someone...
My dad was diagnosed last week with ALS. He has an aggressive form. Doctors think he only has a few months to live. He has a tracheotomy and feeding tube. The past few days he's been having trouble breathing. He's been getting a lot of phlegm build up. The doctors are having a hard time getting...
So here's my story,
My MIL was diagnosed in Nov 2015 after around 6 months of trying to figure out why her foot and leg were having pain/fatigue. She was 61. The first year wasn't too bad but use of both her legs was eventually gone and she was in a wheelchair by the end of year one. Now, 7...
We first notice something was wrong with my dad around Christmas when he started to loose a lot of weight. This progressed with muscle weakness in his neck. He started to have a hard time holding his head up. He finally made an appointment with his primary care doctor. At that...
end of life
My sister was diagnosed about a year ago. We had a family reunion this summer, while she could still communicate yes/no, and her facial expressions helped us read her. Her ALS has taken over her upper region and she can no longer eat, speak, or show facial emotions. She has a feeding tube and...
I would like to share my mother’s story with you in the hopes that I can receive advice regarding my family’s situation. This might seem like a very ‘dry’ explanation of the situation, but I assure you that there are a lot of emotions involved
My aim is to give the clearest and most objective...
I'm planning an operation or insertion in January.
I understand the basic dynamics of both. However, is there anybody on the forum that has experience with a heavy mucus flow during the use of said device(s). My concern is that the 'baloon' is far enough down the trachea that mucus can...