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Nov 30, 2006
I'm new here, just a few days. My ALS had a hard time arriving, because it was the last thing left, and because I didn't want it and hoped the docs were wrong. One of my new friends here wrote to me and said time is a luxury. I hadn't thought of that. I was wasting what time I have left. I have the choice of spending my time being angry, or being grateful for what I have had, and thankful for what I do have.
Many of you are familiar with the Five Stages of Grief: denial, anger, bargaining (with God), depression, and acceptance. I think we all go through the steps, but perhaps not in the same order. Yes, I did deny I had ALS; yes, I have been (and still am) angry; yes, God and I have had many conversations; yes, I've been more depressed than I ever thought possible; but where I want to be, where I need to be, and the reason why I came to THIS group and message board, is to help me with my acceptance. AND my positive attitude.
Without a positive attitude, I can't survive. But with a positive attitude, I can use whatever time God will give me, enjoy it, enjoy the many blessings I have, enjoy my family and friends, and make new friends. I know what to expect, and I know I can't change that, but that doesn't have to consume the time I have. Having, and keeping, a positive attitude may be hard, but I promise to work at it, and with YOUR help, I'll get it and keep it, at least most of the time. I'm positive about that. Thanx for being there.

Hi Alan -

I think sometimes I go through all five stages several times in one day. For example - at my first ALS Clinic appointment which I went to this week I told the doctor that the fact that I'd been diagnosed with ALS was "ridiculous" then I asked for a prescription for Rilutek.

I agree the positive attitude is something we have to work at. This forum is helping me with that and also is supportive on the harder days when "positive" gets swallowed up by despair for awhile. There is always someone here ready to help lift us back up again.

Glad to meet you.

I totally understand where you are coming from. I feel like a yo-yo with being angry with God then trying to bargain with him or feeling like there must have been something that I have done in my life that was so horrible that made him (God) give me this dreadful disease and then there is the depression which is now hitting me like a ton of bricks. I can not wait for the final stage acceptance if there is ever such a stage with ALS.

Liz is also right on the money; when you are feeling down there is always someone here to lift you back up. Welcome!:-D

God Bless

Some days I cry real tears over what I can no longer do. Then I think of how much my life will continue to change and I get angry. Then I decide I am wasting time and start making plans for what to do about my family, the house, my job, the finances, and on and on. I am not sure it is possible to stick with one phase!
Alan, I'm very sorry for your diagnosed with this horrible disease. Regarding the stages..., I think it's true that we go through stages, but as others mentioned, I don't think they are in the same order all the time and I don't think they simply come and then we move on to the next stage. For me, they came and went, some returned from time to time... When dealing with drastic physical, spiritual, emotional and financial... chaos, these stages will never be neat. I have been "down" before, but I don't think I've ever been depressed. However, even though my anger stage was 10 years ago, I remember it vividly, that was a very difficult stage for me and of course my wife. The first few years with ALS can be very frustrating because virtually every week you discover you're no longer able to do tasks that you've been doing with ease your whole life.
Hang in there Alan, this gets easier or at least more managable as time goes on.
You're in my prayers.
Yes, I've had more than one stage in one day and still do. If "things" get easier, I suppose it could be the acceptance. The Prayer of Serenity is posted on my wall: "God grant me the serenity to accept the things I cannot change; (the) courage to change the things I can; and (the) wisdom to know the difference." It's more positive than the five stages of grief. I think we know what we can't change, but what I CAN change is my attitude about it. I don't know if a good attitude is merely acceptance, or something deeper, perhaps spiritual. In any case, I smile a lot.
I was wondering. Are there stages or levels of ALS? I know everyone doesn't experience the same "first" loss of something. But do doctors describe the progression in some manner? hmm. Maybe I don't want to know.
Hi Alan
I wrote an article dealing with the importance a good attitude plays in our lives, now more than ever!
It's on page 14.

Sounds like you have the right attitude! I know it's tough and that there are good and bad days. Just don't dwell for a long time in those 'bad' ones, see it for what it is and carry on.

I'm glad you found this forum. Great people here, ready to lift heavy spirits!

Thank you for referring me to your article.
[ 2006.pdf
It's on page 14.
Well done! And I "am" trying. I'll continue to try. Everything you said is right and there is no "but" at the end of the sentence. Okay, I lied. But --- I can be bright and cheerful with family and friends, but I don't feel that way. Am I being a phony? I can understand that no one wants to hear what parts of my body don't work --- and maybe that's the value of this forum. I can laugh it off when I'm in the house with a neighbor and can't put my pants on, and yes, I can shrug it off, BUT ! I laughed when GrampAL said he couldn't get off the toilet seat. YES! And it won't be long before I have to ask my wife to wipe my fanny, because that day will come sooner than I realize and I can't finish this. I'm sorry.
Are you being a phony? The way I see it (from what you wrote) you are compassionate and care about the feelings of your family and friends. Even though you have this damned disease, you chose cheerfulness over pity. Phony? Absolutely not!

It’s perfectly normal to feel that you’re putting on a show. People do it every day! I’ve gone to work on occasion, not wanting to be there, but you do it. I’ve been to dinner with my in-laws…well, perhaps I’ve said too much.:mrgreen: We know what a pain in the butt it is not to be able to do something you once took for granted. You want to get mad and scream at whoever is present! The trick is to recognize the anger building and realize that it is only an emotion, let it pass on by (control breathing, count to ten) and then try to figure a way out of the problem.

See, for every problem, there is, and will be, an answer. Can’t get your pants on? Look into a healthcare worker to come out and give you a hand. If mobility becomes an issue, look into different equipment. If you can’t afford certain items, look at the ALS Society for help. If you’re like me, my major problem was my ego. I remember saying, when my walking was first affected, was “I’ll be damned if I am getting in a wheelchair!”
After a couple of months of falling and cracking my head open, I finally opted for it. Now I wonder why I hesitated. The same is true for my healthcare worker, other equipment and services.

I guess what I’m trying to say (in a longwinded fashion) is to take it one problem at a time. Don’t try to imagine all kinds of horrible scenarios, which may never come to pass! Keep the cheerful attitude, stay in a loving way with your family and friends, and all else will fall into place.

You’re not Alan…who is suffering with ALS; your Alan…period! Nothing phony about that!
ALS is only a road bump on your life, it isn’t your life.


PS-I can sympathize with Al not being able to get off the toilet seat! Oy!
Great points Mike. As a Christian, I've found from reading the Bible... A big part of faith is exactly what you wrote, i.e., not ALLOWING our FEELINGS to dictate our actions. We are told to love the unlovable, to be kind even to the unkind, to pray for enemies... You asked the right question, is this "acting" being phony? If doing the right thing and keeping the right attidude... No matter how we might feel is phony, than I want to be phony.
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