Diagnosed with ALS 3 weeks ago

[cpmk59]

trying hard not to dwell on how long it's going to take before i turn into a drooling pile of goo that can't walk or feed myself. can't seem to shake the gloom and doom...normal for a newly diagnosed person?

 

[joelc]

Re: DXD 3 weeks ago

You make it sound awful. As one who is there - it is not that bad if you don't dwell on it. You have to take each day as it comes and not look into the future. Enjoy each day as no one knows what will happen tomorrow so why worry about it? What you are feeling is common but not everyone is that way. Enjoy today.

 

[alex scared]

Re: DXD 3 weeks ago

hi . . I am sorry to hear of your diagnoses . . . . I cant begin to imagine how you feel but i can tell you that there are some amazing people here that will listen and offer support . . Your not alone. take care . . Alex

 

[Lavender Lady]

Re: DXD 3 weeks ago

Sorry you have to be here but Joel is right. No one is promised tomorrow so keep living in today. Today your still able to do a lot so keep it up until you can't. Try to enjoy life, plan some fun things to do with family and friends. I will say a pray for you.

 

[abbas child]

Re: DXD 3 weeks ago

cpmk59, yes, I won't lie to you, depending on how your onset is, or to put it better, where it is, when you find out this is the new reality, there's a shocking sense of helplessness. Now, that doesn't usually last. The new reality is something you'll likely find ways to deal with, and on so many levels find new ways to view life and what your life is really about. The people who stay in that state of grief and anger or denial instead of learning to come out of it remain very unhappy. You've had only three weeks. Please read the forum, both the pretty and the ugly, and learn that we can still enjoy life. Read the Christian thread in the PALS section if you can do it. I realize you may be too angry to go there, but we're there and would like to help.

Remember that as all newcomers are told, there's no answer as to how quickly you'll progress, and no pattern. One fellow here began with bulbar but years later says it's very mild, and that particular progression quit, to pick up somewhere else. Your world isn't over yet is the bottom line. I know I speak for us all in saying we're sorry you had to come here, but welcome.
Ann

 

[cpmk59]

Re: DXD 3 weeks ago

tried to find "the Christian thread in the PALS section" but don't know how to do it. i've never used a forum before.

 

[abbas child]

See if this works; this whole page is the Patients with ALS (PALS) Support, and a few threads down is the Christian Thread... many pages, start anywhere you like. And anything in blue letters you can click on. You can click onto a name in blue and contact that person. We're very glad if we can help you, so feel free to ask. Hugs.

People With ALS - "PALS" - ALS/MND Support Group Forums

 

[Chris_b]

I can understand how you feel and the thought of what lies ahead is frightening, but all i would say is it gets a bit easier after a month or 2, especially reading some of the threads on here. I got diagonesed in july this year and still have little breakdowns now and again, more so when i see my 7 year old daughter and shes asking me why my arms not got better yet!
Try not to think too far ahead and as its been said, live each day as it comes.

 

[Ladyinn]

I know it is scarey but as time goes on I find it easier to accept with grace and the good words of encouragement from my forum family. I was diagnosed with ALS in October 2009 and never had the courage to come on the forum until April 2010! Now I wonder "why" I waited so long!

We are all in this together and I like to think that there is strength in our numbers - I feel it each time I am here and hope you will too! WELCOME.

{{{Hugs}}}

 

[Sequoia]

Re: DXD 3 weeks ago

Hello, and wlecome! I just want to say "dito" on abbaschild's thoughts. It is scarey getting a diagnosis of I'd say one of the most dreaded diseases on the planet, but alot of that is going too fast into all the possible symptoms, and reading horror stories before you have even gotten thru the first stage of diagnosis. All my support team members have echo one thing: this can be a precious moment to look squarely at ones life , and see what really matters come bobbing up to the surface. Now is all we have, and to share that fully alive, fully awake, fully loving and open, is the greatest gift on earth. What matters most to you? Live it moment to moment! There will be good and grand moments, there will be difficult and courageous moments. My ALS Team has told me to stay in my "innocence", trust them to help me thru each new phase; they will see it coming and prepare me. There are only a relative few of us ALS-ers on the planet, and I am fast learning that this family is a very very special group of human beings. There are huge questions to listen to, and if we quiet our minds and listen, we will hear our Creator's answers echoing in our hearts. There is grace in the moment, when we need it. Most of all, I am comforted that I am not alone, we are in this together, a family. "Take courage, be of strong heart, trust in the Lord!"
Your Sister,
Seqouia