help!

  1. N

    Need help with Avap setting

    I got best friend in Russia with ALS 60 years old guy and send him Respironics Legacy Series BIPAP last year (thank you for advise from forum). They had doctor who recommended setting. Everything was great. Than recently doctor change settings (increased) and quit the job. My friend realize in...
  2. J

    88 year old Mom recently diagnosed...please help!

    My Mom will be 89 in November. She was always very busy, doing her own cooking, cleaning, etc. She got out with friends a couple of times each week. She was just diagnosed in July with Bulbar ALS and is having trouble speaking clearly. Is there anyone out there who was diagnosed at this later...
  3. Tippenme

    Newbie--need help decoding respiratory numbers...

    Hello to all: I am a newbie and was diagnosed after a year of symptoms in June of 2018 at OHSU here in Portland. (I had previously gone to Mayo in Rochester and was badly misdiagnosed...a story for another time perhaps.) I have been reading through the forums and am truly blown away by the...
  4. M

    My PALS is getting a cold-help!

    My husband seems to be coming down with a cold and I have no idea what to do. This is the first illness he has gotten since diagnosis a year ago. He is on a feeding tube and a bipap at night (12-14 hours). Last time it was tested his breathing was around 50% (don't have raw numbers). He has a...
  5. R

    Muscle Weakness, Spasms and Chronic Fasiculations

    I am new here and am FINALLY seeing a neurologist, but wanted to get a feel for the experience of others. After [failed] surgery to repair my left ankle joint, I knew they had damaged the nerves in my foot and ankle, so any problems in that leg was always seen as a result of the surgical...
  6. W

    looking for advice about my symptoms

    Hi All, can't believe I have arrived at this point. First let me say my heart goes out to all that have been diagnosed with this awful disease. I have the a ton of respect for all who work hard to support people like me with whatever they may be going through. I will try to keep this short...
  7. C

    Tube feeding side effects? Which Formula?

    I have a feeding tube that I currently use for my meds. I see the day approaching where I will need to start using it for nutrition. What are the side effects? Will it be diarrhea after every feed? What formulas are best to reduce diarrhea? Ive heard of gravity feeding and a pump....HELP...
  8. T

    very concerned I have ALS

    I am a 44 year old female with two year old twin daughters. A little background on me, I have had muscle twitches all over my body since I was 19. They have come and gone without any problems. I just notice them and I am otherwise healthy. Lately they have gotten worse and more consistent...
  9. C

    Worried it could be ALS, seeking help!

    Hello guys, I’m new in here, hope yall doing fine. Well, first, my clinical history. I’ve just turned 22, no family history of als. I’ve been diagnosed with GAD when I was 12 and always been worried about having serious diseases, it started with brain tumors and stuff like that. Ive been on ssri...
  10. M

    Golf/tennis enthusiast needs grip help!

    Hi all! I am new to this forum and trying to assist my favorite uncle (newly diagnosed with ALS) with making the most of his progressive grip weakness. He is a lifelong golf and tennis player and coach and still coaches currently. While he is still in the early stages, he is becoming frustrated...
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