trying to come to grips

[machaffi]

I was diagnosed with ALS Wednesday (09-05-2012) and I think I am trying to still denie it to myself. I am feeling scared, Guilty and alone. I am worried about my wife and the strain that I allready see on her. I have thrown myself into doing as much as can to prepare for the things to come so I dont think about it. So I guess what is next.

 

[vzandt]

You've just been diagnosed. You need a little time to think about it. So does your wife. Take it one day at a time. Do as much as you can/want to do. Hug each other..cry..and most of all laugh. The first two months after my husbands diagnosed the only people that knew was our best friends. We laughed over the stupidest things and it helped so much. We cried to. But the laughter saved us. I'm so sorry you have had to find us and I welcome you to our club.
Oh and its been over two years and I'm still kinds in denial
and guilt is a waste of time

 

[CGARS]

machaffi,
Very sorry to hear of your diagnosis.
It sucks, and you think no one could have any idea how you are feeling.
You found the right place. This forum is a source of knowledge, friendship and understanding.
We know how you feel, and most have been, or are going through the same thing.

Know this, there is life after diagnosis. It may not feel like it right know, but honestly I have lived more since being diagnosed than ever.

Hang in there Bud. Ask what you need, share what you can, and stay positive.

Cheers,
Casey

 

[WellsRuby]

The diag no sis is so unbelievably over whelming at first. We take it a day at a time as every one suggested. This is a great forum where you will find support and a wealth of answers. Its been a year for us and I still vent, cry and laugh.

 

[ottawa girl]

You've come to the right place! While we do truly and wholeheartedly understand what you're going through - this may be of little comfort to you - at this moment in time. For instance, it took me well over 2 months from Dx day to sign up on this forum (though I had been a frequent guest). As my "shock fog" lifted, I allowed myself to receive comfort here and slow down my quest to "get everything done today". You will gain a whole bunch of encouraging, sage, generous and sensitive friends here. Just as I have.

I am sincerely sorry that you have ALS but I promise you, just as Casey and others have written, that you will, in time, learn that ALS is not who you are and it will not define you.

Hugs, tears and belly laughs are wonderful gifts. Slow down - you don't have to prepare absolutely everything today.

 

[HelenL]

Hi machaffi, it will take some time to process all the feelings of grief, anger, etc... and at some point will come to acceptance, and hopefully have a bit of living to do! So sorry for your diagnosis, but glad that you found us. Get signed up with a clinic, where you have one-stop shopping... if you're a veteran, call the VA immediately to start lining up stuff before you need it.

Above all, try to stay positive!

 

[vzandt]

It was a almost a year before I joined...but I read. It was and is very hard but this place helps.

 

[ltbeauti]

It took me a lot longer for acceptance than I thought. I would think that i had it under control and then just loose it.... Breakdown and start crying. Or laughing ..
I found out that some of my emotional problems were caused by a condition related to the ALS. And after I got treatment for that it helped.

It will take time to sink in. I would seek help from from your local ALS chapter for any and all info they can give you.

Some people shy away fro the forums in the beginning finding it too depressing. For me I found comfort in the amount of information that I find on this and other ALS forums.

Sorry to hear about your diagnosis and we are here when you need us. There are some great and knowledgable people here.

 

[Compass Rose]

I'm sorry about your diagnosis, machaffi. Like others have said, the shock is intense and will take a while to wear off. One day at a time.

 

[nikolab]

@ machaffi.

I'm sorry about your diagnosis, there is life after diagnosis.

Do not think about ALS, read, listen to music, watch movies, talk with friends ..............

Enjoy it while you can!

 

[machaffi]

Thank all of you, I know that I will need a freindly voice a lot.

 

[momap53]

You're not alone, there's always someone about here to lend and ear or to hold out a hand.
You'll learn to be proactive about equipment needs but to take life one day or even one moment at a time.

Please register with ALSA and the MDA. They have some great caregiver guides and lists of resources.
Register, also at the CDC and fill out the survey questions to help out with their research.
CDC also has listings of all the current Clinical Trials. NEALS, the northeast ALS consortium is also a good resource.

 

[hjlindley]

Welcome to the club nobody wants to be a member of. Deb is right contact your local ALS a and do the CDC registry for all of us please. That said, life does not end with the diagnosis ,it just changes. Realize that each case is completely different individual and progresses that its own rate. We are all here from you for you and I know there will be lots of questions. Mine started in my hands, so there's a rope around my refrigerator that I can hook my arms through to open it. Please do feel free to ask us anything. This diagnosis is a shock a real 2x4 to the head. One day at a time, take a deep breath, watch the sunset. Good luck, we're here for you .

 

[HelenL]

ltbeauti, I still can lose it emotionally depending on the conversation! I'm ok about talking about things most of the time, but sometimes when I talk about my kids... it just can overwhelm. I find that if I try to use humor and make jokes about "Mom needs a crane to get off the floor" it helps us all deal with it better.

I also lurked on here for about 9 months before I actually joined... couldn't do it.

 

[sunewun]

We never know what life will bring us. Just know that we understand, that we share your sorrow and hope we can do a little to pick you up when you are feeling down. /sunewun