Recent content by julialee23

Thanks Barbie - it is VERY hard not to try to step in and handle things myself. THAT is my lesson in all of this. She has more mucous this week as we have discussed in the other thread so next time I see her I will watch for the gagging and if she asks for help, will recommend some of the...

Thanks all. Barbie, she does have a bi pap machine next to her bed but not sure she uses it at night. Never during the day that I know of. I know she wanted a hospital bed recently so she could elevate herself for easier breathing. The weight loss is very concerning indeed. She has...

Hello, I've been reading past posts on Phlegm and see that there are various methods and suggestions in dealing with it. Unfortunately, I probably will not be able to use any of them with my PALS. What I would like to know is whether increase in phlegm and mucous could be/ is likely related...

You would be unhuman if you didn't give in to despair sometimes. I'm sure there will be many lows along the way, but something tells me highs will still have you soaring and you will find joy in places, people and things you didn't expect and isn't that what life ultimately is all about? Hang...

Geez Louise NotBrad - I've been reading your posts in the DIHALS forum and had my fingers crossed that it would be a different outcome. So sorry it wasn't to be. But you are FREAKING AMAZING! I am in this to the end with my PALS, but it will be a completely different journey than your CALS...

Thanks for the replies. I have spent the last week or so readying her home for 24 hour care which she finally agreed to. She was falling every day and by some stroke of luck, never hurt herself. She only had limited daytime care. Her falls generally came when she was alone but last weekend...

I asked her about a feeding tube and she is refusing. I do know ALS is progressive - but I think I'm in a little bit of denial too. It just seems to me that there is more that can be done for her and her choices are limiting her quality of life. I read all the posts here and so many sufferers...

Hello, I would like to know what a sudden gag reflex taking pills or eating even small pieces of food means. I don't think it happens all the time (not me, but my loved one) and it is very recent. Her voice is quite weak but breathing is fine although sometimes she has a very labored cough...

It sounded more weak and gravelly than slurred. I will search for voice banking. I suppose it would be hard to correlate actions with reactions if everyone progresses differently, but having SOMEthing to DO is so much better than feeling helpless!

After more than a month, I have seen my Aunt and she looks ...really well! I am shocked at how well. She is very thin and walking with a cane but she is still driving. The biggest change from the last time she was seen by any of the family is that her voice has become affected. But she...

-it may be time to consider talking with clergy even if you don't have an existing relationship with any. can't hurt to ask... I can't believe I didn't think of this. Thanks so much for the idea which I think is excellent. I did tell her in an email and a voice mail that I would not tell...

I am not sure this is the appropriate place for this post, but I really have no one to talk to. My aunt was diagnosed with ALS over a year ago. She is my mother's sister but they have been estranged their whole lives and so I have only in the last few years, been able to form a relationship...