Old 06-16-2013, 08:33 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: new windsor
State: N.Y.
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 4
photogjackie is on a distinguished road
photogjackie photogjackie is offline
New Member (Say Hi)
Join Date: 2012
City: new windsor
State: N.Y.
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 4
photogjackie is on a distinguished road
Default Anxious about what lies ahead

Hi, diagnosed several months ago but am told things are progressing very slowly. Still am very anxious about what lies ahead., Also, though I can adjust to not walking without much support, do miss gardening hiking etc. Photogjackiie
PS. Want to reach out and talk to others about all this.
photogjackie is offline  
Old 06-16-2013, 08:51 PM #2 (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: 6,265
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: 6,265
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: Anxious about what lies ahead

Welcome
So sorry for your diagnosis but slow progression is good. Try to live each day and do what you can while you can. While it is important to plan ahead try not to dwell on it if that makes sense? None of us can know what the future will hold and especially for slow progressor s like you there may be good treatments ahead I pray that they come quickly for everyone. But even without that there is life to enjoy now. I can imagine how hard your losses are now and how you fear more in the future. That is utterly normal but don't let it stop you from doing what you can.

Take care
Nikki
Nikki J is offline  
Old 06-16-2013, 09:16 PM #3 (permalink)
Senior Member
 
Join Date: 2011
City: nixa
State: mo
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 633
pearshoot is on a distinguished road
pearshoot pearshoot is offline
Senior Member
Join Date: 2011
City: nixa
State: mo
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 633
pearshoot is on a distinguished road
Default Re: Anxious about what lies ahead

please the most important thing you can do for us now is get signed up on the national als registary also sign up there and at your als clinic to be a volunteer for drug trials. i have been in two but now over three yesars since diagnosed so no longer can participate. you are our future. join local support group, exchange information and socialize. its been proven those socialily active will extent life expectancy success and welcome
pearshoot is offline  
Old 06-16-2013, 09:53 PM #4 (permalink)
Senior Member
 
Join Date: 2012
City: Thomasville
State: GA
Country: US
Diagnosed: 02/2012
Interest: I lost a loved one to ALS/MND.
Posts: 606
ECpara is on a distinguished road
ECpara ECpara is offline
Senior Member
Join Date: 2012
City: Thomasville
State: GA
Country: US
Diagnosed: 02/2012
Interest: I lost a loved one to ALS/MND.
Posts: 606
ECpara is on a distinguished road
Default Re: Anxious about what lies ahead

So sorry Photogjackie for your recent diagnosis. My husband has slow progression, too, although his is bulbar onset and he can no longer speak. He occupies himself with as many fun activities as he can. We call them "happy distractions"! That includes having just moved to be near the grandchildren, building a new house, golfing as much as he can while he can, traveling to visit friends and relatives, and staying in touch with everyone on the Internet. Keep yourself busy any way you can with things you enjoy. Lifting you up in prayer!
ECpara is offline  
Old 06-17-2013, 05:48 PM #5 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,659
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,659
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Anxious about what lies ahead

I couldn't agree more Photogjackiie, do as much as you can and enjoy life to the fullest that you have. Try to focus more on these things than what you are losing. Not always easy to do, but it truly does help to count your blessings than to focus on losses.
So sorry to hear you have joined us, we welcome you but are always sad to hear of every new diagnosis.

My PALS is recently diagnosed too and it is very up and down, and I understand the anxiety. I try to focus on a day at a time and small issues, not look too much at the big picture which can feel overwhelming.
affected is online now  
Old 06-24-2013, 09:03 PM #6 (permalink)
New Member (Say Hi)
 
Join Date: 2012
City: new windsor
State: N.Y.
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 4
photogjackie is on a distinguished road
photogjackie photogjackie is offline
New Member (Say Hi)
Join Date: 2012
City: new windsor
State: N.Y.
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 4
photogjackie is on a distinguished road
Default Re: Anxious about what lies ahead

Thanks to all of you for sharing with me. I am trying to be as engaged in life as possible and in fact am going to start some new projects. Its very helpful to be able to communicate with others going through the same process.
photogjackie is offline  
Closed Thread

Tags
diagnosed, support


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
If You're Anxious and Scared... I've been too. tinmanjack Do I Have ALS? Is This ALS? 4 01-14-2016 08:00 PM
Very anxious srijana63 Do I Have ALS? Is This ALS? 7 11-01-2015 08:24 AM
25 and anxious dmb1990 Do I Have ALS? Is This ALS? 9 09-21-2015 11:15 PM
Hello all, new here and just a wee bit anxious raggedywriter Do I Have ALS? Is This ALS? 6 03-21-2013 11:38 PM
Worried & Anxious mamaw2hr General Discussion About ALS/MND 9 03-07-2013 01:24 AM
worried about what lies ahead kate42 Do I Have ALS? Is This ALS? 5 02-23-2013 03:49 PM
Trying to Think Ahead LornaDoone General Discussion About ALS/MND 1 12-14-2010 02:48 PM
Can anyone help, so anxious jennydoc Do I Have ALS? Is This ALS? 7 01-24-2010 10:11 PM
What's ahead? donarden Current Caregivers (CALS) 13 07-15-2009 07:16 AM
anxious again :( Blizna Do I Have ALS? Is This ALS? 13 11-01-2008 06:32 PM


All times are GMT -5. The time now is 05:26 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