mrsmason

Hello young lady,

Please stay with us, lurk around and read. Everyone, I mean everyone here, truly
wants to help. Are we ever misunderstood? Sure, but you will get the help and
friendship you need right here. Trust me. You don't even know me.

Hope you are laughing,

Gentleman Jim

I am so sorry for the response you received on your first post. I joined this forum in August but was unable to post till November. I spent a lot of time reading these posts and never seen the responses you received. I've seen only compassion and a lot of support. My husband who is 60 was diagnosed August 2011. You and your husband are young with small children, this has to be devastating and terrifying. My emotions are all over the place. There is not a day goes by that I don't cry. No one and I mean no one should judge you.

I'm sorry to hear your husband has it. My mom was diagnosed at the end of Aug. My mom has been there for me anytime I needed her. I too think about the future w/out her and will happen to our family. My kids adore her and we are a very close family. A week after she was diagnosed I found out I was expecting our 5th baby. At first she was doing good and recently she got worse and I lost it acouple of days ago just thinking I will one day lose her frightens me. Hold on sweetie! You can vent to me! Although our loved ones have this horrible disease it affects us too and we have our own way of dealing with. Please contact me if you want to talk. I would more than be happy to talk to you!

Please hang in there Mrs. Mason--most members do not jump down your throat at first flush. I wish that PALS would not post negatively on caregiver support postings or tell us how we should be feeling, but there is no stopping it. I try to be kind to all, post happy things and sad things and overlook the jerks. plenty of great people on this site and ou will be loved and supported I promise.

Hi Mrs.Mason,
I'm sorry your husband, you and your family are having to face this. It's not fair and it takes a while to accept it. You just need a bit more time, it's a heavy load on a young mother but in time you will find a way to be strong for your husband and your family. I know that because you are trying, trying to work through it as best you can. There is nothing wrong with seeking a little support, nothing. Nor is there anything wrong with being weak now and again. I'm sorry you got the reception you did. What everyone has said is true unfortunately but not what you were looking for and needed right at this moment in time and for that I am sorry. I hope you stick around, I think you will find what you are looking for, and what you don't know you need yet if you do.

Hey Mrs.Mason,

I am sorry that some of the forum members seemed harsh. I can understand that they are trying to "keep it real" but both Al and trfrogey have had a lot of time to process this disease, you obviously have not. I just wanted to say that there are great people on this forum and a lot of great info and advice, both of which you will need in the future. I am 36yo with 2 sons and my Dad was just diagnosed a year ago. My mother is also terminal with metastatic breas cancer. It is like a punch in the gut and I felt many of the feelings you are having now. It is such a life altering diagnosis and one that takes time to process. Your feelings are perfectly normal and valid. Hang in there. I am here if you would like to vent.

Your kids are too young to understand. My son was six when my husband was diagnosed. We just told him what he needed to know as questions came up and expounded upon things to include compassion for others.

Hoping to catch you before you deregister from the site. We do want to be there for you. Not every post lands well. I've been there and am just so sorry it happened on your first outing...even more especially if you have nowhere else where you can share how it really is with you. Thinking of you.

Hi mrsmason, I just posted in your thread, and do hope you stay online here. I think your feeling are pretty raw right now, and you should try to stick around for a while. Trust me, I've made some wonderful friends online here, and hope you also get your hubby to join us. We've recently lost a couple of dear friends here, and our feeling are a bit raw as well, but together we must go on. Check into clinical trials for your hubby, I think the Dex trial is going into a second phase 3 with higher doses. Sending you a hug and hope you had a nice Christmas, and have many more.

Dear Mrs. Mason: I understand your feelings and I reach out to you in love and support! Please know that you are in my thoughts and prayers! love, Jayne

I am sorry your husband has been Dx with ALS. You have learned to live next to this disease for only a short time. My heart goes out to you. There are so many feelings that can swirl within and they can be especially raw when first diagnosed. I think you will have special memories together with your husband and two children---there's lots of living to do yet. Take one moment and one day at a time. We are here to support you no matter where you're at with grief and no matter how that looks when you share how you're feeling. Hope you had a special Christmas.