Old 12-28-2014, 11:28 AM #1 (permalink)
New Member
 
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Megan Dontain Megan Dontain is offline
New Member
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Default New and unsure of what to do next?

Hello, I think this is where I'm supposed to be....My name is Megan and my husband was diagnosed with ALS on 3/25/14 it's been 9 months and I think I'm just now getting over the initial shock. We are only 32 years old. I'm shaking as I'm typing this....to he honest, I don't even want to be here, but my therapist thinks joining this forum will be helpful. I guess that's all for now.
Megan Dontain is offline  
Old 12-28-2014, 11:31 AM #2 (permalink)
New Member
 
Join Date: 2014
City: London
State: UK
Country: UK
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 16
Candle2014 is on a distinguished road
Candle2014 Candle2014 is offline
New Member
Join Date: 2014
City: London
State: UK
Country: UK
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 16
Candle2014 is on a distinguished road
Default Re: New and unsure of what to do next?

So sorry you find yourselves in this situation. You're in the right place for help and support. X
Candle2014 is offline  
Old 12-28-2014, 11:37 AM #3 (permalink)
New Member
 
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Megan Dontain Megan Dontain is offline
New Member
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Default Re: New and unsure of what to do next?

Thank you. I've been reading some posts and everyone seems very supportive and uplifting.
Megan Dontain is offline  
Old 12-28-2014, 11:55 AM #4 (permalink)
JimInVA's Avatar
Senior Member
 
Join Date: 2014
City: Poquoson
State: VA
Country: US
Diagnosed: 04/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 713
JimInVA is a name known to allJimInVA is a name known to allJimInVA is a name known to allJimInVA is a name known to allJimInVA is a name known to allJimInVA is a name known to all
JimInVA JimInVA is offline
Senior Member

JimInVA's Avatar
Join Date: 2014
City: Poquoson
State: VA
Country: US
Diagnosed: 04/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 713
JimInVA is a name known to allJimInVA is a name known to allJimInVA is a name known to allJimInVA is a name known to allJimInVA is a name known to allJimInVA is a name known to all
Default Re: New and unsure of what to do next?

Greetings, Megan!

There is not a one of us who would prefer that our situations might be different so as to not need to be here. But we're here because "It Is What It Is" and we've each elected to ride this train in the company of others who can understand what we're going through. I"m sorry you find yourself needing to be here... but glad that you were recommended to at least come give us a look. For myself, being here has made our journey a better one. Once we realized we had no choice in the matter of ALS, we grasped onto the one thing that could make this bearable for us - electing to make every day the best it can be rather than to dwell on the unfairness of the circumstance. To that end, these forums have been invaluable... both for the company, care and concern of most every person here... and for the information that we've gained to make the daily mechanics of this much easier and safer for the both of us. Much of our story is written in my introduction thread.

At some point, you will have enough posts to be able to send Private Messages (PMs). So I would encourage you to reply to posts if only to get your post count up. It then allows you additional options for communicating with any of the great folks here. Ask questions... you will find that someone has probably experienced what you will ask... and can give you ideas to move you past any problems or to quell any concerns. You will find a feeling of family here... as no one will judge you and absolutely understands what you are dealing with and going through. As you allow us to help you, you also give us validation and reason for being here and help us.

Thanks for posting. I hope you feel as welcome and encouraged to post as I have been...

Jim
JimInVA is offline  
Old 12-28-2014, 12:09 PM #5 (permalink)
New Member
 
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Megan Dontain Megan Dontain is offline
New Member
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Default Re: New and unsure of what to do next?

Nice to meet you Jim and thank you for your kind words. I will definitely take your advice. As I read through posts everyone just seems to have such hope and positivity. I'm just not there....to be honest I'm pissed. I think this is the reason my therapist has sent me here, to find some sort of community because I have flat out refused to go to a "grief group". I do hope that I can eventually come to the point that you all seem to be at.
Megan Dontain is offline  
Old 12-28-2014, 12:20 PM #6 (permalink)
Senior Member
 
Join Date: 2014
City: Tucson
State: AZ
Country: US
Diagnosed: 12/2013
Interest: I have been diagnosed with ALS.
Posts: 863
azgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to behold
azgirl azgirl is offline
Senior Member
Join Date: 2014
City: Tucson
State: AZ
Country: US
Diagnosed: 12/2013
Interest: I have been diagnosed with ALS.
Posts: 863
azgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to beholdazgirl is a splendid one to behold
Default Re: New and unsure of what to do next?

Hello Megan,

We all may sound positive and uplifting, but that doesn't mean we are not also totally pissed at having this devastating disease. I feel cheated, betrayed by my body and angry of the turmoil it is causing all those around me. But, IIWII (it is what it is), and the choice is to sit around bitter and angry and lose any precious good moments that can be had with those I love, or to find some way to find something, anything to feel grateful and joyful about. That is hardest to do in the beginning.

So sorry you find yourself here. But there a good people, knowledgeable, caring people here. For me it's been better than any grief or support group to attend in person.

Hope we can help along the way...you know we understand and will try.
Best,
Kay
azgirl is offline  
Old 12-28-2014, 12:33 PM #7 (permalink)
New Member
 
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Megan Dontain Megan Dontain is offline
New Member
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Default Re: New and unsure of what to do next?

Hello Kay,
It's good to hear others as opposed to the grief group as I. It is my hope that I can take advice from you all and actually put it into action in my own household. I'm just really struggling to get past the unfairness of the situation, especially when I look at my children.
Megan Dontain is offline  
Old 12-28-2014, 01:11 PM #8 (permalink)
New Member
 
Join Date: 2014
City: London
State: UK
Country: UK
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 16
Candle2014 is on a distinguished road
Candle2014 Candle2014 is offline
New Member
Join Date: 2014
City: London
State: UK
Country: UK
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 16
Candle2014 is on a distinguished road
Default Re: New and unsure of what to do next?

I didn't start posting until after I lost my mum last month but I have been reading this site and one in the UK since February when MND first reared its ugly head. I have been through every emotion possible at different stages and repeated a few, which is normal I'm sure. Some like groups others like me prefer a forum like this. You can usually find someone who has been there already and can help. We all have different perspectives but we're all ****ed at ALS/MND for what it does to the PALS and the CALS.
Candle2014 is offline  
Old 12-28-2014, 04:27 PM #9 (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: 11,041
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: 11,041
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: New and unsure of what to do next?

Hi Megan and I'm so very sorry to welcome you to this group. We would be thrilled to disband this group and never need it, but since we need it we have made it the absolutely best place to be.

ALS SUCKS and WE HATE IT - oooh underlying anger issues in there eh?

We also know that we have to beat the monster by living every single day the best way we can, it's our best tactic.

Thanks for introducing yourself, we can support you and get to know you from this important first step you have taken.
affected is online now  
Old 12-28-2014, 05:13 PM #10 (permalink)
Barbie's Avatar
Extremely Helpful Member
 
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,672
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Barbie Barbie is offline
Extremely Helpful Member
Barbie's Avatar
Join Date: 2007
City: orlando
State: FL
Country: US
Diagnosed: 01/2007
Interest: I lost a loved one to ALS/MND.
Posts: 2,672
Barbie is a jewel in the roughBarbie is a jewel in the roughBarbie is a jewel in the rough
Default Re: New and unsure of what to do next?

Hi Megan, this group will help you to deal with your feelings much better because we Really, Truly, get it. we are all also pissed and sad and grieving just like you, but are learning to deal and live the best that we can. I know for me this group is my life line.

all my best,

Barbie
Barbie is offline  
Old 12-28-2014, 06:13 PM #11 (permalink)
skipper66's Avatar
Very Helpful Member
 
Join Date: 2012
City: SMALL TOWN IN
State: ILLINOIS
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,479
skipper66 is on a very distinguished road
skipper66 skipper66 is offline
Very Helpful Member
skipper66's Avatar
Join Date: 2012
City: SMALL TOWN IN
State: ILLINOIS
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 1,479
skipper66 is on a very distinguished road
Default Re: New and unsure of what to do next?

Hi Megan,
Welcome Megan. Sorry, for your need to be here. Share with us more about you. I saw where you mentioned having children? How old are they? Do you have any pets? We are all big pet lovers on here especially of dogs. Come to the thread on here 'The Pub Is Open. We go there to talk and take a breathier from ALS. Hope to get to know you more on there. Kim
skipper66 is offline  
Old 12-28-2014, 07:12 PM #12 (permalink)
rictak in IA's Avatar
New Member
 
Join Date: 2011
City: ruthven
State: Iowa
Country: US
Interest: My beautiful 37 Y/O wife was diagnosed 5-17-11
Posts: 51
rictak in IA is on a distinguished road
rictak in IA rictak in IA is offline
New Member
rictak in IA's Avatar
Join Date: 2011
City: ruthven
State: Iowa
Country: US
Interest: My beautiful 37 Y/O wife was diagnosed 5-17-11
Posts: 51
rictak in IA is on a distinguished road
Default Re: New and unsure of what to do next?

Hi Megan. Welcome. So sorry to hear about your husband. My wife was also diagnosed young (37). That was 3 1/2 years ago. It's a struggle and a constant readjustment of what you think of as normal, but it can be done, and with a little positivity it can even be a rewarding experience, helping a loved one through this. I don't come around here very often anymore because life at home with a 2 young ones and ALS in the house gets pretty busy, but I think your therapist is probably right, joining here will help, seeing that you're not alone, and that those deep inner thoughts you are having aren't actually crazy will help you get a handle on things. Do you guys have kids?
rictak in IA is offline  
Old 12-28-2014, 07:22 PM #13 (permalink)
Senior Member
 
Join Date: 2014
City: Bridgetown
State: Western Australia
Country: Aus
Diagnosed: 10/2014
Interest: I am a family member of someone with ALS/MND.
Posts: 592
Gembead is on a very distinguished road
Gembead Gembead is offline
Senior Member
Join Date: 2014
City: Bridgetown
State: Western Australia
Country: Aus
Diagnosed: 10/2014
Interest: I am a family member of someone with ALS/MND.
Posts: 592
Gembead is on a very distinguished road
Default Re: New and unsure of what to do next?

Hi Megan,
Welcome to our group, I have found so much inspiration from this wonderful group here in their desire to make the very most of their time as they share their love and knowledge with us and especially their loved ones as PALS or CALS, it's not fun not knowing what the future looks like as our minds tend to run away with all sorts of sinarios, we really do need to make the most of today and not worry about tomorrow as it will be here soon enough.
Hugs to you and hubby.
Love Gem
Gembead is offline  
Old 12-28-2014, 07:50 PM #14 (permalink)
New Member
 
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Megan Dontain Megan Dontain is offline
New Member
Join Date: 2014
City: Temecula
State: California
Country: US
Diagnosed: 03/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 33
Megan Dontain is on a distinguished road
Default Re: New and unsure of what to do next?

Thank you all for your warm welcome. You all sound like you have it all totally together and I hope to gain that mindset eventually. I'm still super apprehensive about dipping my feet into this pool. Sometimes I can't even sort my feelings about ALS out in my own mind, let alone type them out for the world to read. All I know at this minute is I don't want any of this...I want my husband to be able to walk and breathe and live.
Megan Dontain is offline  
Old 12-28-2014, 09:12 PM #15 (permalink)
Senior Member
 
Join Date: 2013
City: Small town
State: Midwest
Country: US
Diagnosed: 08/2012
Interest: I lost a loved one to ALS/MND.
Posts: 977
cheerleader is on a distinguished road
cheerleader cheerleader is offline
Senior Member
Join Date: 2013
City: Small town
State: Midwest
Country: US
Diagnosed: 08/2012
Interest: I lost a loved one to ALS/MND.
Posts: 977
cheerleader is on a distinguished road
Default Re: New and unsure of what to do next?

Oh Megan- so, so sorry you are having to deal with this at such a young age! I lost my husband of 54 years last month to this monster disease and if there is anything I've learned through this it is this! There is still life ahead for you both. Make each day count and try not to let the anger and resentment overwhelm you. Know that's easier said than done but.....your energy will be sapped just dealing with this disease as a CALS. We made a decision early on that whatever time we had would be spent loving each other and trying to have as good a day as possible with ALS hanging over us. It is not an easy road we travel, my friend but we don't travel this alone. Your feelings are ones we've ALL felt. So rant, cry, scream and whatever you need to do here- and then take your remaining energy and put it into making great memories to last a lifetime. Today is the only guarantee any of us have! Good luck. Hope you will find strength and comfort here, and feel the support which has upheld us all through this! Hugs to you both.
cheerleader is offline  
Closed Thread

Tags
als, diagnosed, helpful, shaking, unsure, what to do next?


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
Unsure and confused dave8 Do I Have ALS? Is This ALS? 4 01-30-2015 03:35 PM
unsure where...so post on here veggiepete Other 2 07-28-2014 02:55 PM
Life is unsure ottawa09072013 Newly Diagnosed 12 08-10-2013 11:04 PM
Still unsure! Mir1013 Newly Diagnosed 9 11-06-2012 06:12 PM
Unsure Jenny711 Do I Have ALS? Is This ALS? 6 06-16-2011 06:54 PM
Unsure Jess Do I Have ALS? Is This ALS? 8 07-07-2008 09:34 AM
unsure twodmacks General Discussion About ALS/MND 2 09-08-2007 07:32 PM
Unsure of diagnosis ! MyFathersDaughter General Discussion About ALS/MND 4 11-26-2006 09:23 PM


All times are GMT -5. The time now is 02:57 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