cookimonster is on a distinguished road

cookimonster cookimonster is offline

New Member (Say Hi)

Visitor Messages

Showing Visitor Messages 1 to 2 of 2
  1. affected
    07-02-2016 01:29 AM - permalink
    Hi :) Bulbar onset + FTD is often one of the more rapid progressions, but not always. It's all so unpredictable. Yes Chris was gone 11 months after diagnosis. He was diagnosed around 9 months after the real onset of bulbar symptoms. But there were signs of something going on up to a couple of years prior to the slurring and choking. So it could be that he had a very slow onset, but it certainly ramped up once the bulbar really started. However, his rapid weight loss and injuries from falls, and no bipap definitely contributed to his life span being short. I would not have wanted him to live a long time though, he was in a living hell with his rage and paranoia. hugs
  2. affected
    07-01-2016 02:29 PM - permalink
    I'm sorry that you are now following the same trail.
    Anything I can do to help, you got it xxx

About Me

  • About cookimonster
    What's your relationship with ALS/MND?
    I am a caregiver for someone with ALS/MND.
    If diagnosed, when was the diagnosis?
    State or Province
    I am a caregiver for my wonderful husband Jim. We are newlyweds!!!
    Caregiver, Wife, Chief Cook and Bottle-Washer
    Horses, Photography, Cooking and Entertaining


Total Posts
Visitor Messages
Total Thanks
General Information
  • Last Activity: 07-14-2016 06:26 AM
  • Join Date: 06-29-2016


Showing Friends 1 to 1 of 1

Contact Info

Instant Messaging
Send an Instant Message to cookimonster Using...
This Page

All times are GMT -5. The time now is 07:30 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