Old 10-05-2016, 01:45 PM #1 (permalink)
New Member
 
Join Date: 2016
City: Holly Springs
State: North Carolina
Country: Uni
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 81
njk0407 is on a distinguished road
njk0407 njk0407 is offline
New Member
Join Date: 2016
City: Holly Springs
State: North Carolina
Country: Uni
Diagnosed: 06/2016
Interest: I am a caregiver for someone with ALS/MND.
Posts: 81
njk0407 is on a distinguished road
Default Immense Hope

Hi Everyone,

It's been awhile since I've last posted. I've been muddling through what I now know to be the "7 stages of grief". I see a therapist weekly and am on anti-depressants. While not a "cure all" it has definitely helped. My PALS is doing good on his Tirasemtiv clinical trial. I've noticed some slight progression mainly with he has seemed to "slow down" with his overall movements (takes him longer to do things), he's had some balance issues (mainly if he tries to squat down or sit on the floor), and his speech is slightly worsening Overall though I think he's still in pretty good shape. I wanted to let you know for those who might be interested that I found this 6 part series on Youtube called "Imagine Heaven" I actually started watching it yesterday while at work (shoosh don't tell ) and it has given me tremendous hope and has seemed to pull me out of the pit I've been in for the past month. I've been having a really hard time emotionally especially with having young kids. This diagnosis and disease is heartbreaking as you all know too well. Sometimes the panic sets in and I feel as though I literally can't breath if I let myself think about it for too long I would give anything for this to not be happening and to have my husband around for many years to come. Our 5 year old son still is not aware of what's going on, but I get the feeling we need to talk to him soon as I'm sure he is detecting some changes with Daddy. Thankfully our 1 year old is oblivious. I'd like to thank you all again for being an outlet of support and especially at the beginning of diagnosis. Several times I've went back to my original posts and have reread what I posted. To say I was in shock and in complete and utter despair is an understatement. Thankfully, the shock does wear off and although it still sucks it's more manageable.
njk0407 is offline  
The Following 2 Users Say Thank You to njk0407 For This Useful Post:
KimT (02-17-2017), Lixen (11-07-2016)
Closed Thread

Tags
back, balance, clinical, clinical trial, cure, diagnosis, grief, hope, kids, progression, speech, stages, support, trial, wanted, work, young


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
I hope it isn't... Clearwater AL Rants & Raves 12 11-21-2014 06:36 PM
Hope is what gets us through SarahKatherine Stories of Hope 7 09-30-2014 08:54 AM
I hope you are well nebrhahe53 General Discussion About ALS/MND 24 08-03-2014 12:05 AM
maybe hope ardalon ALS Research News 1 02-20-2014 05:28 AM
Looking for hope CCINJERSEY General Discussion About PLS 7 09-19-2012 09:50 AM
There may be HOPE! dianan General Discussion About ALS/MND 41 04-19-2012 02:16 PM
So my hope is gone sadandconfused General Discussion About ALS/MND 14 06-22-2011 09:56 PM
Hope Air Al Stories of Hope 2 03-08-2009 11:16 AM
There Is Hope Shane the Pain ALS Research News 8 02-03-2009 07:42 AM
Hope Patsy General Discussion About ALS/MND 1 06-15-2005 02:28 AM


All times are GMT -5. The time now is 03:42 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