My husband was just diagnosed with ALS

Status
Not open for further replies.

jjkiever

New member
Joined
Mar 6, 2012
Messages
2
Reason
Loved one DX
Diagnosis
01/2012
Country
US
State
WY
City
Casper
I am feeling overwhelmed and not sure what to do next. We have two young children, 9 and 7, we don't want to tell them anything right now. I have always been the strong one but I always had my husband to lean on when I needed him. I feel like I have lost my rock-I know I need to be strong for him but I don't know where to turn when it feels like too much. My husband is still seems to be in early stages so we will continue to be as normal a family as we can while we can. I just feel lost and like I am going crazy, is this normal?
 
I'm so sorry for your husbands diagnosis JJ. You've come to the right place and I welcome you. I'm in Northern Colorado so not far. When you catch your breath, contact your local ALS Association. They know everything about ALS and also have a loaner closet with about every piece of equipment to help you through this that you can imagine. I was recommended to a Neurologist and Pulmonologist by the people in my ALS Support Group too. Is there an ALS Clinic close by you? I'll try to find some lin ks for you. Anyway, welcome to the forums. We'll be here for you.
 
It's an overwhelming diagnosis and it will take some time to digest the ramifications for your family. Just try to take it one step at a time.
You'll find plenty of information and support here on the forum. We have members worldwide so there is usually someone online day and night.
You can even search the archives for topics that you're interested in. The members had some enlightening discussions about "telling the kids"
Please be sure to check out the "current caregiver support group" You'll find others who are dealing with the same issues and can help to guide you along the way.

So glad you found us but so sorry that the need arose
 
Here's a link to a discussion about how others dealt with telling their children.

[thread]Telling the Kids[thread]
 
Last edited:
Well, the closest ALS Support Group is mine here in Loveland, CO and the closest ALS Clinic to you is in Denver. Quita a haul for Denver. I can recommend some good doctors in Fort Collins and you're more than welcome to our Support Group that meets every 4th Tuesday. I know you're pretty distressed right now. Can your doctor prescribe something to calm you? Hugs to you!
 
TRY to take things one day at a time and not to think of what's ahead all the time. And stay ahead of this disease by reading and by contacting your ALS Society and Clinic. And when family and friends offer to help later on, accept it graciously! This forum just never ceases to amaze me with all the wonderful people on it always willing to lend a hand in any way possible. Look at the all the help you've received already from Ms. Pie and momap53! Live, laugh and love as much as you can. Yasmin
 
Last edited:
I am so sorry to hear this. I was diagnosed in Dec 2011. The first month after I was told I cried ALOT. I am normally a strong willed person but I allowed ALS to take over my life. I was really upsetting my husband who was trying so hard to be MY rock. It has taken me alittle time to realize I was putting everything in my life (in my head only) on fast forward. I have pushed the play button again and live each day and only think about that day. Tomorrow will take care of itself and I dont worry about it because its not here yet. Take your time and let the shock wear off. I think all of us go through the same process when told about ANY terminal illness/disease. I have been reading the posts here for the last couple of months but today is the first day I have posted. From what I have seen this is a really FANTASTIC group of people that will help anyway they can. My strength truely comes from my GOD and I am blessed each day.
 
Thank you all so much for your replies! I have a very strong, loving support group at work but once I got there today I fell apart so I came home, which I feel guilty about on top of everything else. It helps talking to people who are or who have gone through this.
 
JJ, you are so right that you need to talk to those who are going through it. However, don't discount those work people! I thought that my, and especially my PALs family would be our main supporters, but I was wrong....it is our work family! They are not only there to listen, but they let me cry, have a bad, non-productive day, and simply let me quit for the day when I really need to. They are my lifeline. My advice to you is to gratiously take everything that is offered to you, give thanks everytime it's appropriate, and read, read, read.

We are all here to help you on your journey.
 
We are all here for you. Just remember, each individual progresses at a different rate. One day at a time, take a deep breath, and look at the number of people who you can talk to here. The only silly question is the one you DON'T ask, so feel free. Allow yourself to mourn the future you thought you would have and savor today! Good luck,
Holly
 
And I need to echo that whatever support system you have in place use. I thought my family would step up. Not exactly. My church family and particularly my women's group has been wonderful. We also have Stephen's Ministry though our church. Somebody needs to be your ally so that you can talk about this. You'll find someone hopefully that is has been on this same type of journey or has suffered a loss that will be your rock as time passes.

Prepare for this disease in advance before you need the cane, walker, chair. Whatever comes may come quickly or slowly. Good Luck.

One year into his journey and my husband's progression has been rapid. Last year at this time he walking with a cane. We thought that was an adjustment.
 
I am so sorry your young family has to face this monster. It is a heavy load to bear, and I would suggest you talk with your own doc about what is going on. When my husband was first diagnosed, we told no one including our 4 kids. it was brutally hard to pretend he wasn't sick and basically lie to everyone when they asked about him. My doc put me on anxiety meds which helped me cope with the stress since I had to be the rock of the family. You and your husband are grieving right now and probably reeling from the diagnosis, so do not be too hard on your self.

Just know, it may go very quickly for him or it may go slowly. Either way, I am glad you have found us, I know this forum is filled with kind and helpful pals and cals who can help you.
 
So sorry for the diagnosis, it takes a while to digest all this and know how to deal with it. Welcome to the forum though, hope we can help..
 
Welcome, sorry you have to be here but here is where you will be welcomed and helped in many ways. As has been said take time to get a handle on this monster, and keep a open mind to things that you will need as it progresses. There are no words that will make it all easy to take but your attitude and strength will get you through so much. Be sure to live, laugh, and love everyday.
 
Status
Not open for further replies.
Back
Top