Old 11-12-2012, 02:33 AM #16 (permalink)
New Member
 
Join Date: 2012
City: Glastonbury
State: Connecticut
Country: US
Diagnosed: 06/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 18
TeamDom is on a distinguished road
TeamDom TeamDom is offline
New Member
Join Date: 2012
City: Glastonbury
State: Connecticut
Country: US
Diagnosed: 06/2011
Interest: I am a family member of someone with ALS/MND.
Posts: 18
TeamDom is on a distinguished road
Default Re: If you could improve one thing about ALS...

Notme: I couldn't agree more with your statement:
"The medical community is very uneducated at large about ALS, as are the people that work in govt. offices."

I'm finding it very difficult to find nursing assistants that have any experience with ALS. Now we have to pay triple the amount to get skilled medical professionals such as, LPNs and RNs. Sure the VA compensates him for his disability but its not nearly enough to pay for all the expenses. My father worked hard his whole life to create a comfortable nest egg and now he has to go through his life savings to get the proper care he deserves. I feel fortunate that he has the monetary means but what about those pALS that don't?

I feel bitter sweet about the VA. On one hand, they provide us with most the equipment we need but, on the other hand, if my father didn't serve in the military, would he have ALS? As many of you may know, those that served in the military are twice as likely to get ALS.

Another issue I have with the VA is while they're great at supplying much of the needed equipment, unfortunately, the reps that drop off the equipment don't know how to use them nor customize the settings. When the cough assist rep came by, she had the setting so high that my dad's eardrums almost burst. So now we have an apartment full of expensive pulmonary equipment that is collecting dust.

I'm fortunate enough to have the time and resources to advocate for my father which is a full-time job with no pay but, it isn't easy to do when I have two young children and a husband depending on me as well. Also, sometimes I feel as though I'm not qualified to know all that my father needs, so it seems like I'm always in reactive mode.

Then I always wonder, what about those pALS that don't have friends/family that can advocate for them? How do they do it? These thoughts keep me up all night.

I could go on and on but the question is - How can we educate these medical professionals to provide the proper care that pALS desperately need and deserve?!

Team Dom
TeamDom is offline  
Old 11-20-2012, 01:52 PM #17 (permalink)
New Member
 
Join Date: 2012
City: Northumberland
State: Pa
Country: US
Diagnosed: 09/2012
Interest: I am a caregiver for someone with ALS/MND.
Posts: 10
slicknscoot is on a distinguished road
slicknscoot slicknscoot is offline
New Member
Join Date: 2012
City: Northumberland
State: Pa
Country: US
Diagnosed: 09/2012
Interest: I am a caregiver for someone with ALS/MND.
Posts: 10
slicknscoot is on a distinguished road
Smile Re: If you could improve one thing about ALS...

I have to agree with the assistance with caregivers. I am a ft caregiver to my mil and have two children ages eleven and thirteen. I have been to every appointment with my mil. There seems to be alot of help and support for her needs but none for the caregivers and family. I have decided to start a non profit organization that will help caregivers by providing them a chance for date night or family fun activites while providing a nurse to care for the affected. This will begin once my caregiving is no longer needed.
slicknscoot is offline  
Closed Thread

Tags
als, als?, bulbar, bulbar onset, caregivers, caregiving, diagnosed, diagnosis, familial, genetic, genetic testing, hope, hospice, information, insurance, introduction, life, onset, testing


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
How would you improve your PWC? Nuts General Discussion About ALS/MND 22 07-27-2015 04:41 PM
Does pulmonary function ever improve? nebrhahe53 General Discussion About ALS/MND 2 01-17-2015 07:10 PM
The right thing to do seaside Rants & Raves 5 06-20-2012 09:33 AM
This POA thing... brooksea Current Caregivers (CALS) 13 09-24-2011 09:10 PM
Methotrexate improve walking Whitetiger Chronic Pain 7 04-23-2011 03:04 AM
Help to improve quality of life lsavage2000 Tips, Tricks, and Gadgets 16 07-05-2010 02:26 PM
What is the best thing that you've had come out of this Dx? kedevlin23 General Discussion About ALS/MND 13 08-21-2009 10:03 AM
Improve the ADA! MarkV64 General Discussion About ALS/MND 1 02-25-2009 05:40 PM
PLS - Symptoms Improve? MichaelH General Discussion About PLS 2 12-15-2007 01:16 PM


All times are GMT -5. The time now is 12:45 AM.

 

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