Old 10-12-2015, 05:23 PM #1 (permalink)
New Member
 
Join Date: 2015
City: Eureka
State: CA
Country: US
Diagnosed: 09/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 19
ccraig1771 is on a distinguished road
ccraig1771 ccraig1771 is offline
New Member
Join Date: 2015
City: Eureka
State: CA
Country: US
Diagnosed: 09/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 19
ccraig1771 is on a distinguished road
Default Good days, bad days

I am still very new to this forum, my mother was only diagnosed three weeks ago and given less than 6 months to live, but in this time I will like we have been dealing with this forever. Watching the strong woman that I know struggle to swallow and breath. But we do have good days. We actually got the brand new wheelchair out and went to the mall. We had a good time. It's these moments that I will hold onto. The bad days are really bad, but we are with her. She keeps saying "I'm still here." I know that this is still denial for her, but I don't want her to be afraid. So I will let her hold onto that denial until she doesn't need it anymore. On a different note, does anyone have any suggestions on the saliva and swallowing issue. That is one of her biggest complaints that she is choking. She won't use her suction machine because she says that the problem is further down in her throat. Any help is very appreciated.
ccraig1771 is offline  
Old 10-12-2015, 05:32 PM #2 (permalink)
GregK's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,708
GregK has disabled reputation
♥ GregK GregK is offline
Very Helpful Member
Forum Moderator

GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,708
GregK has disabled reputation
Default Re: Good days, bad days

Do a Search. Start with "titles only". Quite a few hits.
GregK is offline  
Old 10-12-2015, 07:34 PM #3 (permalink)
starente15's Avatar
Senior Member
 
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
starente15 starente15 is offline
Senior Member
starente15's Avatar
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
Default Re: Good days, bad days

Hi ccraig,
I'm glad she is able to enjoy the good days when they come. My dad was prescribe atropine to dry up his mouth and amitryptiline to decrease secretions. I believe there is another as well but someone else will have to provide the name of it as it wasn't a huge issue for us. Welcome to our little group!
starente15 is offline  
Old 10-12-2015, 08:31 PM #4 (permalink)
Senior Member
 
Join Date: 2013
City: Small town
State: Midwest
Country: US
Diagnosed: 08/2012
Interest: I lost a loved one to ALS/MND.
Posts: 977
cheerleader is on a distinguished road
cheerleader cheerleader is offline
Senior Member
Join Date: 2013
City: Small town
State: Midwest
Country: US
Diagnosed: 08/2012
Interest: I lost a loved one to ALS/MND.
Posts: 977
cheerleader is on a distinguished road
Default Re: Good days, bad days

Craig, in my mother's heart, wondering if her denial is really an effort to protect you, her child? If she is in denial, maybe you won't worry so much? Don't expect logical- think love! You are in my thoughts. Thanks for being there for her- the greatest gift you can give her. Donna
cheerleader is offline  
Old 10-12-2015, 09:09 PM #5 (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: Good days, bad days

Don't expect logical- think love! --Donna

Outstanding perspective. That's absolutely right.

I have only one thing to add for Star: Don't forget the survivors. You and your mother will have a future even after your father passes.
Atsugi is online now  
Old 10-12-2015, 09:44 PM #6 (permalink)
starente15's Avatar
Senior Member
 
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
starente15 starente15 is offline
Senior Member
starente15's Avatar
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 803
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
Default Re: Good days, bad days

Thank u Atsugi
starente15 is offline  
Old 10-13-2015, 12:32 PM #7 (permalink)
New Member
 
Join Date: 2015
City: Eureka
State: CA
Country: US
Diagnosed: 09/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 19
ccraig1771 is on a distinguished road
ccraig1771 ccraig1771 is offline
New Member
Join Date: 2015
City: Eureka
State: CA
Country: US
Diagnosed: 09/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 19
ccraig1771 is on a distinguished road
Default Re: Good days, bad days

Thanks everyone! Thanks Star for the info. I will ask her nurse about that. Also @ cheerleader, I think that you are right. She began crying this morning, and when she saw the concern on my face she immediately composed herself. I think she is being strong for me. I told her that as her daughter that I want her to cry if she needs to because I cry over this, it helps as a release. On another note, she had a wonderful dinner with us last night. I made homemade soup and pureed and strained it for her. She actually had seconds. It was a good night.
ccraig1771 is offline  
Old 10-13-2015, 12:34 PM #8 (permalink)
New Member
 
Join Date: 2015
City: Eureka
State: CA
Country: US
Diagnosed: 09/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 19
ccraig1771 is on a distinguished road
ccraig1771 ccraig1771 is offline
New Member
Join Date: 2015
City: Eureka
State: CA
Country: US
Diagnosed: 09/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 19
ccraig1771 is on a distinguished road
Default Re: Good days, bad days

Quote:
Originally Posted by Atsugi View Post
Don't expect logical- think love! --Donna

Outstanding perspective. That's absolutely right.

I have only one thing to add for Star: Don't forget the survivors. You and your mother will have a future even after your father passes.
By the way I love this. "Don't expect logical-think love!"
ccraig1771 is offline  
Old 10-18-2015, 05:45 AM #9 (permalink)
gooseberry's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,450
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
gooseberry gooseberry is online now
Extremely Helpful Member
gooseberry's Avatar
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,450
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
Default Re: Good days, bad days

People are going to tell you to "stay strong". I hate that phrase. I try to control my emotions around my family so our times together can be as happy as possible. But when I can , I have a good cry. It does release all the tension and emotion and I think since that is gone I am a better cals for many days. Talk with your mom, let her express her concerns and if she has none, a few of your own for her will start the conversation. I have found many times that the not talking about what was happening with this disease just made it a lot worse.
gooseberry is online now  
Closed Thread

Tags
choking, denial, diagnosed, problem, saliva, suction, swallow, swallowing, wheelchair


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
Bad days starente15 General Discussion About ALS/MND 31 10-12-2015 02:38 PM
Having one of those days starente15 General Discussion About ALS/MND 15 11-09-2014 08:09 AM
365 days ago ottawa girl People With ALS - "PALS" 22 04-22-2013 05:04 PM
Fewer Good Days rachelg Current Caregivers (CALS) 16 09-29-2012 03:38 PM
Good days/Bad Days early on? kenwood54 Do I Have ALS? Is This ALS? 13 08-28-2012 12:55 PM
Good days and bad days cocacolafun General Discussion About ALS/MND 13 07-18-2012 10:49 PM
364 days until..... trfogey Other 11 12-24-2011 03:35 PM
last few days... i think. GigiDi Current Caregivers (CALS) 30 12-26-2008 09:46 AM
When you're having one of those days... ZenArcher General Discussion About ALS/MND 4 12-19-2007 09:13 PM
Are Some Days Different Then Others wewillbeatthis General Discussion About ALS/MND 3 01-03-2006 09:47 AM


All times are GMT -5. The time now is 07:02 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