What Keeps you going?

[Al]

Hi Pollyanna. I was just thinking. My wife had to help me up from a chair a couple of times on the weekend and she improvised by pulling up on the back of my belt. We were at a party so I had pants on. Had to quit going to the pants off parties after the ALS kicked in. I was thinking that if your husband put on a belt before going to the bathroom it might make it easier for you to grab it and help him up. Might look funny with no pants just the belt but if it works it works. And you can laugh about it later. AL.

 

[Jeannie]

Many folks who chat in the ALS chatroom http://client1.sigmachat.com/sc.pl?id=144320 say chatting and meeting new friends in the room is what keeps them going.

Many have said they wouldn't know where they'd be today if they hadn't found the room.

Everyone is welcome, it was good to meet Janf a member from here yesterday in chat.

Jeannie x

 

[donnah]

The day my husband got Dx he took my hand and his first words were " Dont be afaird" it is those words that keep me going. What keeps him going is me keeping him going, not letting him know that I'm scared, as long as I show him I'm brave he will be brave. His family and friends keep him going.
None of us see ALS we see him. You will know what keeps them going just look into there eyes thier eyes will tell you.

 

[paula B]

The day my husband got Dx he took my hand and his first words were " Dont be afaird" it is those words that keep me going. What keeps him going is me keeping him going, not letting him know that I'm scared, as long as I show him I'm brave he will be brave. His family and friends keep him going.
None of us see ALS we see him. You will know what keeps them going just look into there eyes thier eyes will tell you.

The eyes tell all. Bravo

 

[Pollyanna]

Al, you always make me smile! I have used a gait belt before with my elderly aunt, but my husband is still having trouble with each visual reminder of what is happening to him. He hasn't reached the "handle it with humor" level yet. And he definitely hasn't reached the "help me off the potty" stage. I know that will have to come, but we just are barely out of denial, so I'm trying to give him time and space to adjust. It's just that time is becoming more and more of a rare commodity! Thanks again for the suggestion and the smiles...you are great!
Pollyanna

 

[Teej]

my husband's coping mechanisms

I am not the one with ALS, my husband is...and I am working to get him on here ...But in the meantime, I will echo the sentiments of many on here and say, that he is a tremendous man of faith...When he was first diagnosed, he did not even know that ALS was, by definition, a terminal illness. After researching it, I found him sitting in a room staring quietly, and I asked him, "are you ok? are you afraid?" He replied that he was actually fine, and that he was not in the least bit afraid of ending this life and seeing Jesus in the next, but he was very sorry for what it would mean to me and our four girls. His father passed when he was 17 and his younger brothers were 9 and 7, of a heart attack, so he knows very well the pain involved for the ones left behind. He has handled this with grace and LOTS of laughs. I think that God and humor are two key things for him. I cannot imagine anyone facing each day of this without the full knowledge that the Big Guy had their back. We have had EVERY need met, even before we knew we needed it. We have both prayed for a miracle, but have peace if God continues to allow this, as He has assured us through the kindnesses of many, that we are not walking this road alone. I am thrilled to be able to share this here, and thrilled to see other believers, as I know you have the same peace my husband does and that makes my heart glad. Many blessings to everyone and thanks for letting me share....Teej

 

[MtPockets]

God Bless you Teej

You are an encouragement to us all. Thanks so much for sharing about your husband and his faith. He sounds like a fine man and one I would love to meet on here someday.

There are quite a few Christians on the forum, and we are all doing our best to walk by faith through this trial, for we know what awaits us on the other side. We all have our ups and downs, but we still believe God has a master plan for each of our lives. Even though we might question it sometimes, he's still God, and I trust him with my life and my death. For to be absent from the body is to be present with the Lord.

Maybe if you have a printer, you could print off a few of the encouraging words for your husband to read so he might feel more comfortable joining us here at the forum. We share with each other, we cry, we laugh, we pray, we encourage one another, we answer questions, and we all share in this terrible disease. WOW! Where else could you go and get all that in one place?

God Bless
Big AL

P.S. Look forward to talking with your husband sometime.

 

[rcharlton]

I've paraphrased the following from earlier posts of mine:

I'm not a spiritual person - and I believe that the life I am living right now is all I'll get.

I think the problem with Western culture is that most people take life for granted.

In countries where the average life expectancy is 30 to 40 yrs old – the average person probably won’t live long enough to develop illnesses like ALS. With malaria, famine, war, etc. there are a lot of places in this world where people don’t even have a hope of living long enough to develop ALS. I keep reminding myself of that whenever I start to feel sorry for myself. When I see posts from children who are justifiably devastated when their parents are afflicted with ALS in there 70s and 80s, part of me shares their sorrow, while another part of me thinks how lucky they are to have lived as long as they have – to have children and even grandchildren – and that they should be rejoicing about the time they have had together. If someone assured me today that I was going to live till I was 70 or even 60 – it would be like winning the world’s best lottery. Similarly, I am sure that there are millions of people in this world who are envious of my life and would trade places with me in a second – ALS and all. I guess it’s all a matter of perspective.

Since my diagnosed I've realized how many things I use to take for granted. Everything now has more meaning - it's like all of my emotions have been heightened (that could just be the ALS talking). In a lot of ways I've never been happier or felt more alive.

Sure I get scared sometimes - but for the most part I am completely at peace.

That numbness that so many people experience as a result of the dreariness and lack of purpose in their day to day lives has vanished for me. I now know that everyday is a gift and I already have so much to be thankful for in my life. Is it better to live a long life feeling half dead all the time or to live a shortened life feeling totally alive? I don't know...

I also imagine how I would feel if, after stressing about ALS and letting it consume my every thought, I lay in a hospital bed dying...not from ALS but from getting hit by a bus or infected with bird flu. I would feel pretty stupid having wasted all that time stressing about ALS only to die from something else unrelated.

You may not have a choice about ALS - but I firmly believe you have a choice about being happy or depressed...and I choose to be happy!

So do whatever it takes to make you feel happy - watching your dog chew on a bone while his tail is wagging, reading an Archie comic, wearing a goofy hat, digging up your old teddy bear from childhood, going out to smell spring blossoms or watching fall colours, calling an old friend to laugh and cry - and if you think it may help - by all means get in touch with your spiritual side....

As long as something does not involve a significant outlay of money or imposing your personal opinions - and it makes you happy - I say go for it...

Good luck everyone.

Richard

 

[MtPockets]

Peace is that not what we ALL seek?

Hi Richard,
I appreciate your comments and you are right on when you say we should be thankful that we are not in some 3rd world country, or many other things. I'm glad that I was blessed to live to be 60, and have 4 children and 14 grandchildren before ALS came into my life. Everybody has to die from something.... I'm grateful I had a full life and enjoyed it before and enjoy it even more now that I know my time is limited.
For some reason I remember Forest Gump saying "life is like a box of chocolates" or something like that. You never know just what you will get, until you bite into one.

We in America and Canada have been able to live a good live for the most part. We have had opportunities that many in the world have not had and for the most part we take them for granted without being thankful.

My family was in Gulfport, Mississippi when hurricane Katrina struck. My family had 165mph winds for over 5 hours. Some of my family lost everything they owned. Most of them have not received any help from the government, Fema, Red Cross, or any other agency. What little help they received was from churches from all over the states who just showed up and gave us food, water, and helped us make it thru this terrible storm. We still have people living in tents here on the coast, and Fema a year later still has not helped them. I diverse to say this because things could be a lot worse, and they are for some here. An 84 year old lady confined to a wheelchair with no family and only a small social security check was evicted from her rental home. She had no place to go, but my daughter helped her find a place. There are thousands literally who have nothing but a concrete slab for a home and a mortgage, lost their jobs, lost their cars, ....yes things could be worse. We should be thankful for what we do have.

I've lived a full life, loved every minute of it, and even love it now more than ever. I appreciate having the time to plan for my end, my funeral, my will, my goodbyes to friends and family. That is one thing we are blessed with that a lot of people never get if they die of a heart attack, car accident, or many other ways instantly. I'm not bitter, but the opposite. That may be hard for some to understand.

I know where you are coming from with your belief system and I respect that, and I know there are many others on the forum who share the same feelings. I only ask that others respect my belief system too. I make no excuse for the fact that I believe in God and His son Jesus as my personal Saviour. I won't get all preachy now because you've probably heard it all before, and I don't want to hurt you or anyone else for their beliefs, but I'll just ask anyone who wants to know more about my beliefs to send me a private message and I'll do my best to share my thoughts and feelings.

God Bless,
Big AL

 

[Al]

Seems to me that you guys both agree on the same principles but one puts a name on it. Christian or not you both are giving the same message. We're all in this together. I think we all respect each other here and this is why we stay here and not a couple of the other forums where they allow all sorts of nonsense. This is a good comfortable place for people no matter what your beliefs. Lets not lose sight of that. AL.

 

[MtPockets]

We are all in this together

Thanks AL for the freedom to express ourselves. We are all in this fight for our lives together and need to support all those who are on the forum.

God Bless
Big AL

 

[CindyM]

Hi Al. I agree it is easier to be postive than negative. Keeping positive creates energy and thinking negative takes too much energy. Visits with my grandchildren definately keep me going! You seem like someone who knows the value of relationships and meeting or visiting with other people. I am just now re-ordering my priorities. I used to focus on the task. Now I focus on the person, probably because it is too hard to do things but mostly because a job well done is just that. But a visit with a friend is so much more.

 

[Brentt]

I have been dealing with als for several years now .I spend a lot of time on the computer learning. I can no longer enjoy outdoor activities or anything physical. I am bound to a wheelchair my arms don't work and I can't talk . But I got to tell you I am so content this way .I can not change my physical limitations but I can change the way I feel about everything . I try to find the good things in my life .Or should I say I try to make the best of everything in my life.I found that if I complained then I worried my wife ,if I tried to fight it I just got weak.I learned to find the facts about this disease and now I know that I am very fortunate to live in the time that I live in.The technology gives me comfort far beyond what was available just years earlier. The people in my life and trying to make them happy gives me the most satisfaction of all. There are so many things that keep me going I just look for more and that does it . Good luck and god bless
Brentt

 

[janf]

Poly's husband

Hello ! Polyanna I really relate to you. My husband and I have been married for 36 years and we love being together thinking about all this is so very hard. I have been diag. with ALS I go to Atlanta Ga. next week for the 5th time (4 doctors) I will go to ALS clinic.I think your husband is probably feeling LIKE THINGS ARE COMING TO FAST, I FELT THAT WAY LAST WEEK WHEN THEY DISCUSSED W/C. You know how these men are John Wayne until the end. Hang in there he'll come around. I enjoyed all the input on this forum God is the PEACE the TRUTH the LIGHT. He didn't put these diseases on us. I don't understand why he allows it to happen but, I also know we are not supposed to understand everthing that happens on this earth. Or why it happens. I know who holds tomorrow and I knows HE HOLDS OUR HANDS(i used to sing this) but, I can't now. One day I will sing again if not healed on this earth we will be in HEAVEN. If anyone reads these posts and you don't know the pease God offers just ask all of us, we are here to guide you to him. Whoops I'm Preachey now. lol

 

[Al]

Hey Jan : You WHOOPS I FIX. AL.