Old 01-20-2016, 09:37 AM #1 (permalink)
New Member
 
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Drewsmom Drewsmom is offline
New Member
Join Date: 2014
City: dixie
State: usa
Country: US
Diagnosed: 07/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 68
Drewsmom is on a distinguished road
Default End stages

Hey just wanted to update.
Yesterday my pals had his last appointment with his neurologist. She assured him that hospice is managing his care well and that she would continue to be his neurologist, but that there was no need for a follow up appointment. He has continued to stay in denial. Hopefully this will help him come to terms. He is in the bed 23 hours per day, sleeping a good majority of that time. Hospice has changed him from morphine to methadone. Even in large doses of morphine - he remained in pain. His neuro checked his fvc yesterday and his readings were .1, .4, and .4 of 1 liter. So less than 10 percent. He should be at 5 liters for his age and height. He had a good seal on the mouthpiece. He does have throat weakness, but not sure if that can contribute to the low numbers. It's amazing to me he can still stand and walk with his low numbers and the amount of medication he is on. This disease is crazy.
Drewsmom is offline  
Old 01-20-2016, 11:08 AM #2 (permalink)
Atsugi's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,067
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ Atsugi Atsugi is online now
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 5,067
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: End stages

Thanks for the update. We can all learn from it.

At some point, the doctors have nothing more they can offer, and the only thing that matters is keeping the patient comfortable hour by hour.

It's amazing how far the body can push itself. My mom was still participating from her wheelchair, speaking and transferring with help, when her heart was hardly pushing out one or two weak beats per minute, I think. She lived a couple of years with very little heart and lung action. The body might just get used to it.
Atsugi is online now  
Closed Thread

Tags
age, bed, denial, fvc, hospice, hours, morphine, neurologist, pain, stages, update, wanted, weakness


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
End Stages...just got more complicated Handmaiden General Discussion About ALS/MND 6 10-24-2014 12:10 AM
Early stages of ALS? cgw2551 Do I Have ALS? Is This ALS? 21 03-17-2014 06:05 PM
What are the final stages? NCurran825 Current Caregivers (CALS) 3 01-24-2014 06:41 PM
Final Stages pscheffel ALS and FTD 16 12-10-2012 02:47 PM
5 Stages of Grief ottawa girl General Discussion About ALS/MND 22 07-23-2012 07:40 PM
Last stages for someone with ALS? Sunnyinsd General Discussion About ALS/MND 21 02-15-2012 10:37 AM
Final Stages? How do you know? lisaohgee General Discussion About ALS/MND 13 05-10-2011 11:24 PM
Mom in her last stages jdale949 Current Caregivers (CALS) 23 01-25-2011 01:04 PM
Mom in final stages? palsdotter Current Caregivers (CALS) 5 07-26-2010 06:13 PM
Stages? Adele General Discussion About ALS/MND 4 03-30-2007 08:50 AM


All times are GMT -5. The time now is 07:21 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016