New member with new perspective on ALS/MND

[hope]

Marcia, I know how you feel and my heart goes out to you. My husband is a wonderful man and it is truly heartbreaking to be in this. I feel helpless at times. Sometimes I do not know what to say. My husband says honey you do not need to say anything, loving me all these years and taking wonderful care of me says it all. This is painful Marcia but please know we are here for you. Your sister is lucky to have you.

Sandy.

 

[rcharlton]

This is a bit of a double post - but I thought it was appropriate...

I'm not a spiritual person - and I cope just fine without thinking that this life is just some practice run for a big reward in the afterlife. It is my personal belief that my only after life will consist of my being worm food.

Do I get scared sometimes? You bet! Do I cry? uh huh...but I spend more time laughing...

I would not go so far to say that ALS is a gift...but 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.

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 - reading an Archie comic, wearing a goofy hat, digging up your old teddy bear from childhood, going out to smell spring blossoms, 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 cramming your opinions down someone else's throat - and it makes you happy - I say go for it...

Good luck everyone.

Richard

 

[hope]

Richard,

Your post was very well written, I enjoyed reading it. Thank you.

Sandy.

 

[Michael FM]

Hello Terri,

I just want to say that what is working for me is not my strength or my beliefs or my faith in some religious concept. What allows me to feel at home where I am in life and near death is my understading of the big picture as painted by spiritual science. Rudolf Steiner, the main contributor, was a very advanced human being and he was clairvoyant. He didn't make this stuff up. He wrote over thirty books and gave over six thousand lectures which were turned into many more books. It takes a lot of studying to get a sense of the big picture and it's best to study with in a group that includes people who can answer the many questions that come up for newcomers. For me, seeing the overview of human evolvement is not only extremely fascinating, it also enlightened me to the purpose of my being here and pointed to how I can best proceed with my journey. Again, this is not an issue of strength or belief, it is about understanding and choosing.
The universe is here for our growth and to understand the details of this is very uplifting.
By the way, my symptoms are such that I can still walk and totally take care of myself. So I have a lot of failing of health yet to experience. I'm sure this will cause much anxiety for me as I loose my freedom. I'm aware that my suffering will act within me to develop spiritual strength for my future lives. The suffering we experience serves us greatly. My understanding is that we're each on a long journey and this life is one step of many. Those of us with ALS are taking a large stride. It WILL pay off for us. Lastly, we receive spiritual help especially if we ask for it.

Take care my friend,
Michael FM

 

[Barbie4]

bird therapy

Hi Richard;

I wanted to say that your post was great to read and I enjoyed it too. My friend and I sat outside today and enjoyed the moment. We listened to all the birds singing, felt the sun and just relaxed and forgot about ALS for a bit.

Thanks Barb:-D

 

[marlo]

Hello Michael,

Welcome to the forum. I too have no problem with death.,, i mean i'm not looking forward to getting from here to the after life but i know that ,,,is really my home. This one is only temperary. I'm not sure that blessing is the right word exactly, but i do understand what you mean. I am very careful not to shove my religion down other peoples throats that are not interested,, but i do know there are others on this forum that walk with the Lord too. Just because i don't have a problem with death doesn't mean i don't have thoughts of missing my children and my first and only grandchild. But for those of us that do believe in Heaven,, it means peace, love, and no more tears and pain. And once we're gone, we won't remember earth as we know it now. And i am looking forward to seeing the other members of my family that have already gone,, ahead,, like the child i lost,, and my wonderful grandmother. Also both of my parents etc. even my husband and a lost love of years ago. I pray for all of the people everywhere not just on this forum that are dealing with terrible things like Cancers , MS, MD, ALS/PLS etc. that they find the strength to take it one day at a time and know that it will be alright,, here or in Heaven.
I won't bore everyone with my story about why i have ALS,, but i do believe it had something to do with some prayers i was having with the Lord just prior to getting sick. Becareful what you pray for or about cause God answers in his way not ours. But on a brighter note,, those same prayers brought me a grandchild that the doctors had told my daughter she would not beable to have. So is it my life for the life of a child for my daughter ? Who knows for sure,, but i'm not complaining.
Take care,, and again welcome to the forum.

Love and Prayers
Marlo

 

[marlo]

This is a bit of a double post - but I thought it was appropriate...

I'm not a spiritual person - and I cope just fine without thinking that this life is just some practice run for a big reward in the afterlife. It is my personal belief that my only after life will consist of my being worm food.

Do I get scared sometimes? You bet! Do I cry? uh huh...but I spend more time laughing...

I would not go so far to say that ALS is a gift...but 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.

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 - reading an Archie comic, wearing a goofy hat, digging up your old teddy bear from childhood, going out to smell spring blossoms, 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 cramming your opinions down someone else's throat - and it makes you happy - I say go for it...

Good luck everyone.

Richard

Richard,

Wow,, except for the worm food,, LOL i couldn't have said it better myself. Enjoy the little things in life everyday. Smile more, cry less. Be thankful for what you have,, instead of dwelling on what you don't have. I do have a home in heaven,, i'm sorry you don't think you do. I will pray about that,, if ya don't mind.

Love and Prayers
Marlo

 

[spud01]

Richard,

I loved your post, Thank you

Terri

 

[ichortle]

attitude

Michael,

I like your attitude towards the disease. I see life as what it is doing for me instead of what it is doing to me. Having ALS sucks in many ways, but it has strengthened the bonds of love between myself and my family and friends. I am grateful to be surrounded by so much love.

Steve