Old 10-09-2015, 01:58 AM #1 (permalink)
New Member
 
Join Date: 2015
City: bend
State: or
Country: US
Diagnosed: 4/2015
Interest: I have been diagnosed with ALS.
Posts: 13
lilblackhorse is on a distinguished road
lilblackhorse lilblackhorse is offline
New Member
Join Date: 2015
City: bend
State: or
Country: US
Diagnosed: 4/2015
Interest: I have been diagnosed with ALS.
Posts: 13
lilblackhorse is on a distinguished road
Default Re: PALS roll call Wednesdays ( or whenever)

still here, going quickly. diagnosed May of this year. Just got accepted to Hospice, and met with the prescribing doctor who can get me the Death With Dignity drugs by next week. Not ready to go yet, but I figure my legs will go in the next 3 weeks or so, left arm is not great, right one is going too. Sucks---at least I can breathe and swallow. The loss of mobility really blows.I have been enjoying sitting in the sunshine in the powerchair on my front porch...and rolling downtown. Not sure how this goes when I can't stand up anymore.
lilblackhorse is offline  
Old 10-14-2015, 10:09 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: 5,132
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 offline
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: 5,132
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: PALS roll call Wednesdays ( or whenever)

Quote:
Originally Posted by lilblackhorse View Post
still here, going quickly. diagnosed May of this year. Just got accepted to Hospice, and met with the prescribing doctor who can get me the Death With Dignity drugs by next week. Not ready to go yet, but I figure my legs will go in the next 3 weeks or so, left arm is not great, right one is going too. Sucks---at least I can breathe and swallow. The loss of mobility really blows.I have been enjoying sitting in the sunshine in the powerchair on my front porch...and rolling downtown. Not sure how this goes when I can't stand up anymore.
Hi LBH,
My wife also had a fast progression.
Are you doing hospice at home?
--Mike
Atsugi is offline  
Old 10-14-2015, 10:30 AM #3 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,619
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,619
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Progression

Since Mike chose to start a conversation I made a separate thread as the PALS roll call is not an appropriate place for this. Lil if you wish not to continue the thread you can close it using thread tools
Nikki J is offline  
Old 10-24-2015, 01:19 PM #4 (permalink)
New Member
 
Join Date: 2015
City: bend
State: or
Country: US
Diagnosed: 4/2015
Interest: I have been diagnosed with ALS.
Posts: 13
lilblackhorse is on a distinguished road
lilblackhorse lilblackhorse is offline
New Member
Join Date: 2015
City: bend
State: or
Country: US
Diagnosed: 4/2015
Interest: I have been diagnosed with ALS.
Posts: 13
lilblackhorse is on a distinguished road
Default Re: Progression

yes, hospice on board now. I have had trouble getting up out of bed for the last few days, and almost didn't make it off the couch yesterday. Right arm is going, which is the only decent appendage I had left at this point. It's freaking out all the friends who don't think it can go this quickly. I've gotten thru all the hoops for the drugs, I figure the rate I'm going I'll make it to Thanksgiving....I don't want to live where I have to hve 24/7 care, and can't move. I am thankful I live in a state with a choice---my daughter has come home to be here, my son will come in a few weeks. we'll spend time together and then I can just say goodbye to this crappy disease.....it just seems to be taking on a daily basis.
lilblackhorse is offline  
Old 10-24-2015, 01:34 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: 5,132
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 offline
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: 5,132
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: Progression

Lilblackhorse, I think I understand where you're coming from, and I totally agree you've got to do whatever you feel is the best for you.I'm really glad you have children who care. You must have raised them right.
Atsugi is offline  
Closed Thread


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
Progression Michellesews Current Caregivers (CALS) 3 10-14-2015 02:35 PM
Is there any way to know the progression? :( Lory People With ALS - "PALS" 10 03-05-2014 03:15 AM
FTD progression? affected ALS and FTD 15 02-04-2014 02:01 AM
Progression Clearwater AL General Discussion About ALS/MND 6 09-18-2013 02:48 PM
Progression kds4 People With ALS - "PALS" 4 09-03-2013 10:25 PM
What's next in the progression? hopeangel66 People With ALS - "PALS" 25 11-08-2012 02:13 AM
Progression Pandy Do I Have ALS? Is This ALS? 19 02-23-2012 12:56 PM
ALS Progression? Jeff Long General Discussion About ALS/MND 33 09-02-2011 11:55 PM
Where are we in progression? cervus General Discussion About ALS/MND 14 06-23-2011 10:49 PM
Progression of ALS Alastair Dunwoody People With ALS - "PALS" 9 11-10-2008 11:54 AM


All times are GMT -5. The time now is 12:48 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