lgelb

I will keep you updated 🫂 ❤️

HI Laurie

My Mom is on a Trilogy machine and is having issues with breathing with it. Can you PM me with help with her settings?
Thank you!

I updated my profile.

Hi Laurie,
I'm looking for a ventilator vs BiPAP machine for my sister which do you think is the way to go keeping in mind few points :
-She will never be trached
-We will get it out of our pocket
-She rarely if ever leaves the home.
If your answer is BiPAP machine which specific one you recommend ? I mean what is the best out there regardless of the money factor ?Thanks

Hey, Laurie. Thanks for replying to my post. I feel a lot better now after reading. I guess I do have anxiety. Going to see a therapist/doctor about it soon. I wish you the absolute best. You’re really amazing. Thank you again for helping me calm my anxiousness.

Hey I don't know to respond to conversations on this website. I'm knew and he hasn't full got diagnosed as the doctor is making us wait over 2 months for a specific ALS doctor

Hi, sorry to bother you, but I have one quick request.

I use this username on a lot of sites, and it's quite easy to find out who I am with a quick google search.
Is it possible for you to change my username? Kinda don't want any future employers to see my health anxiety meltdown, and so on.

Don't bother doing it if it's a lot of work.

Laurie, I could use your help re a couple of things. I have been using an AVAPS for about 4 years, switched to a Trilogy(in AVAPS mode) about 1 year ago. During the night, the IPAP will go up to its set limit of 25 cm H2O, do I need to raise the limit or leave it as it stands? The other problem is that when it gets towards the limit, I start to get a lot of mask leaks. I have tried numerous masks and adjustments

Hello, Laurie. Is there any way you can send me a PM or vice versa? I need to ask you a question. Thanks.

Hi Laurie i hope you are doing ok, healthy, happy/ I hope you keep safe. Are you aware of any connection about Herpes Zoster and ALS? Mum had it before she got sick and now my sister got it and we are terrified/. I know, i know, i am tiring you, but sometimes i feel you guys are the only ones i can talk to about my fears. I miss you.

Hi there, im not sure im sending you a msg properly. I noticed you mention your husband had frail arm. Can you tell me how it progressed? And if it turned into classic als?

Good morning, yesterday you answered my Post about my doubts in relation to chronic denervation in an emg in a muscle but I don't know how to answer the thread because it doesn't give me the option to answer, how could I do it? Would it be possible for me to send you my emg so that you could see it and comment on it? Thank you very much

Martha

The below references are in response to the Sticky on PLS in the Medicare and other benefits section.
Often a veteran has the appeal to the BVA. Tht is what I had to do. It has been 3 years.

VA Policy-Primary lateral sclerosis (PLS) is not considered to be a qualifying disease under 38 CFR 3.318