I have received an unofficial diagnosis and am losing my speech quickly, along with lots of respiratory weakness and breathing issues. My voice appears to be going first (especially tongue weakness) and I was wondering how long it took those who have lost the ability to swallow to...
I am looking for some ideas for binders or any tools that I can use to organize for the aid, nurses, and volunteers that will be coming into my home to help out.
I am typically a very organized person but for some reason, I can't figure out what will work the best.
A folder for each group...
First, I must say this is my first post here and am thankful for the insight all of you provide.
I have been reading posts here for a few days, looking for situations similar to mine and can't quite put a pin in it. I'm not looking to be diagnosed on the internet and understand...
I've spent some time looking at some threads, etc. but wanted to pose a question or two.
My issue started a few months ago (Jan) where I was at lunch and a glass slid from my hand which typically I wouldn't think too much about. I then got home and poked around and did some research as I...
My mom had an appointment at the clinic today and I wasn't able to go. My Aunt sent me the page with her stats on it but I don't understand some of the results and mom won't be strong enough to fill me in until tomorrow. So if anyone can interpret I would appreciate it.
The results of her...
First - I have read all of the important documents at the top of this forum. I am extremely appreciative to anyone who takes the time to read and respond and I wish everyone on here the very best.
I am going to outline my symptoms, testing, and stats simply to make this quick and easy for...
Can ACV mode bring Bronchospasm, if used for long ?
Mom has been in the vent since mid February. For last 2 months or more, she has been in ACV mode. Earlier she was in V-SIMV & PACV modes.
For about a month or more, she has been experiencing Bronchospasm. She feels like...
Several weeks ago I had a problem swallowing a piece of food - it was like I was unable to start the swallow reflex and the food stood at the end of my tongue for a second or two. That scared me and to be honest ALS was the first thing to come to my mind (I knew a person who had ALS...
Six Month Lunasin Report
Started on the Duke University\McDuff regimen on Aug 15\2015.
Weight: 181 lbs
ALS FRS: 25
For the previous year (Aug 2014 - Aug 2015) I lost about 3 lbs on average between visits to my ALS clinic, so about 9 - 10 lbs for the year. My FVC declined...
I copied some statements (below) about life expectancy. Here’s what I think I know from the doctors and from helping my wife as she progressed:
In ALS, death usually comes from impaired breathing, especially aspiration pneumonia due to swallowing problems. If the patient lives long enough...
person with als