life

1 Month Warning. That's what I just gave the family, via the private family FB page. One month of no quality, coherent time with Matt and we will be taking him off the vent. He was clear headed about a week ago just long enough to tell me that crazy communication doesn't count, so when he's...

Hi Everyone, Haven’t posted in about a year. My father was diagnosed approx 18 months ago with ALS and he is in the final stages. He has trouble holding up his head, can barely walk on his own, not eating anymore on his own and getting all his nutrients from a feeding tube. Just this week his...

Hello. I want to start off by saying it's wonderful what you guys do here, and my heart goes out to every one of you. I've read through the stickies and a number of threads. I'm an 18 year old Caucasian male. I realize my age makes having ALS incredibly unlikely, and that's a fact I remind...

Hello all! I'm posting about my Mother-in-law who has received a potential diagnosis of ALS, but is being sent to a specialist here in Atlanta to confirm. It started in June with back pain/trouble walking and a very slight slurred speech. I'm not sure everyone would have noticed her speech at...

35 year old male, fairly active, good physical health my whole life except for some football injuries. Need to begin by saying that I have had severe bouts of health anxiety within the last year, colon cancer, lung cancer, bone cancer, all of which started with small symptoms that manifested...

Good morning. 32 years old with two young children and pregnant with my third. Undergoing testing for a neurological issue, with ALS as one clinical possibility although I have no been formally or even informally diagnosed yet. I have life insurance through my employer but no private policy. I...

This is mainly a vent.. We are still working on discussions for writing up an advanced directive. My doctor is referring us to a palliative care doctor to help facilitate those discussions and make final decisions. While talking about this I told my husband when the time comes I DO want a...

For the past 2 and a half weeks my life has felt like a complete nightmare. In late September I started a different workout for the first time in a long time, bar lunges, everything was fine and then a few days later my legs started twitching. At first i nudged it off and just frowned upon it...

For the past two weeks or so I’ve been having excruciating pain in both calves. They feel like a consistent deep cramp that comes and goes and vary in pain. I have also noticed that while my legs are in motion or I am working out the pain is less, but they could hurt while I’m sitting down doing...

Hi Guys, my ALS has been very slow and even static for a period of over a year. But in my recent tests, early neurodegenerative changes have shown up all over my body. I guess I'm trying to figure out if I'll start collapsing all together or I'll experience periods of deterioration in various...