mad

I'm usually very positive, but finding it harder and harder lately! ALS has stolen so much from me already and I'm still just at the beginning! I lost one of my jobs because insurance won't cove me driving patients if I have ALS. My other job is threatening to let me go because I'm moving...

The last few days have been tough at my house. It makes me so sad, mad, and frustrated that I can't make things better for my PALS. Feeling helpless and unable to offer hope sucks. It is heartbreaking and it makes me really mad. If I were a guy, I would punch the wall. I'm not so I guess I...

Hello everyone, about 4 years ago I woke up and my left hand was odd feeling..just wouldn't function right. I didn't think anything of it as there was no pain at all. About 2 years passed and I noticed that it was progressing to be much worse and when I would bend my thumb it would shake...

Had my first visit today to try to help with peg tube. Nurse was from hospice and said that she sees survival from diagnosis to death of about 1 year. Not what I wanted to hear:mad: Also took last blood test to rule out any other possibility no matter how remote. Its official, I have ALS. Wife...

:mad:Wednesday morning my CNA started the day with the announcement that she is quitting and going back to school! I am worried sick as well as so sad to be losing her. She is a wonderful and caring individual who has been with my husband almost 2 years--she is our first and only outside...

Hi All, Today I had to take my 87 year old mom - bulbar onset - to the hospital's endoscopy unit, she had to change into a gown and be prepped as if she were having a surgical procedure, all for the gastro to come out and change the valve on the end of her tube. That's all I wanted, was to...

I think we've got pneumonia..or a lung infection..or something. Last couple days Haydens swallowing/choking/mucus has all of a sudden gone crazy. Have hardly slept since Tuesday, coughing, choking, gasping for air. Hasn't eaten more then a piece of toast.. Had Dr in yesterday, he prescribed the...

My dad was actually diagnosed on 12/13/13 and given an educated guess of 4 months of life because of the rate of deteriation at the time. We are now 8 days past the 4 month mark, YAY! I feel like between me, mom the doctors, and home health/hospice we have done a pretty darn good job of taking...

Some background, a disclaimer, and a question... Background: Had my DPS "installed" in June 2013. Pretty unremarkable procedure & recovery; only issue was the grounding wire pulled out about 2 inches a few days after surgery. I'm still 'grounded' (despite what my bride would say!) so other...

My husband has been diagnosed with ALS in December. Most of the time he is pretty good, but some times he get mad with frustration and yells. I understand but sometimes it hard to be everything. A wife, chef, cleaner, dentist , mom and still have time for me. He doesn't understand that I...