quality of life

  1. JimInVA

    Shifting Sands...

    Our journey began at a Joe Bonamassa concert in November of 2012. With no advance warning, Darcey was suddenly having difficulty walking. Later that same night, she'd be unable to rise from a seated position. It was the beginning of a life phase that neither of us anticipated. For all of...
  2. B

    Constant use of Bipap machine

    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...
  3. Kristina1

    disagreement with my husband/cals about end of life decisions

    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...
  4. N

    Extensive medical workup; symptoms getting worse

    Hey there, I’d like to start by saying I appreciate those who are going through this illness and vigilant on these forums, as the comfort of having friends with same possible experiences is something that helps with my current fears. Here’s my last 3 months of hell: Male Age 29. Before...
  5. B

    Revisiting the Neurologist

    To preface — I’ve read the READ FIRST posts, so I hope all details below are relevant. 29 year old, smoker for 8 years. About 3.5 years ago I noticed minor tightness in my throat that I payed no attention to at first. Over the course of time I became more aware of slightly labored breathing...
  6. Kristina1

    frightened by another post

    The post in general forum about eye lid surgery frightened me. I was under the impression that all or vast majority of pals can use eye gaze communication indefinitely despite body becoming fully paralyzed. At this stage in my disease my feelings are that I want to continue to live for as long...
  7. N

    Trach - What is it like?

    Hello I'm trying to get a general idea from those who have gone through the tracheostomy process. What was your recovery time like and pain? How does it feel when breathing afterwards? Is it something you have to get used to? Is it better than what you were experiencing as far as breathing on...
  8. Clearwater AL

    Decisions...

    (I questioned whether to post this or not. Some may take it wrong but it may bring some conversation to this sub-forum. And… I’m not sure what sub-forum it belongs. Mods… move it if need be.) This is about decisions many of us face. First, I no seek of sympathy, Ann and I have been very...
  9. Chincoteaguer

    What about exercise?

    Should ALS patient do physical exercise for therapy? Some say no and save energy for things that lend to quality of life. Some say only range of motion. Some posts from PALS say It helps maintains muscle tone.. My wife still has the ability to lift herself into a standing position which...
  10. T

    Is this the end??

    Hi - My name is Michelle and my sister was diagnosed with ALS April 2015. She seems to have got it pretty bad and drawn out. At first it was just her tripping a lot, then she would just fall and couldn't get up, couldn't get off the toilet or out of bed without help. As it got worst and worst...
Back
Top