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NothingButLove

Distinguished member
Joined
Dec 25, 2016
Messages
106
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
CA
City
Anaheim
My wife's neurologist first suggested ALS in early October. I've been a basket case for the past couple of months. I don't know if your brain just runs out of "sadness juice" or it develops calluses but very recently I could feel the "fog" starting to lift. I guess you just can't hurt that bad for that long.

I introduced myself on this forum on the "Newly Diagnosed" sub-board and received a very warm welcome. I noticed that many people had high post counts. Some post counts were in the thousands. I decided I wanted to be an active member of this forum and do what I could to help everyone out. So a couple of days before New Years, I marked all posts as read in the forum. From that point on, it was my intention to read every post and respond if I thought I could help.

The first post/thread I read was about a wife announcing her husband had had enough and decided to go off the ventilator. In a later post she announced he had passed away. The second post/thread I read was about a bitter husband with ALS causing additional stress to his wife/caregiver. I didn't read anymore threads. I didn't respond to any posts. I cried for about an hour. I told my wife why I was crying and we cried for a couple minutes more. This post is the first time I've been back to this forum since. I think it was just too early for me. The fog came rolling back quick.

I've realized that as sad as I've been, I'm in the "golden period" of this disease. My wife can still walk to the bathroom with a rollator. She can still use her arms, talk, eat and breath. The thought of what's coming is unbearable.

I'm 51 years old and I've had friends and acquaintances experience tragedy. One person's son died at 16 in a car accident. No goodbyes, no planning, no bucket list... You're just gone. Another friend's daughter died of leukemia. She was about 21 and had just graduated from Pepperdine. There was hope but her treatment failed. About a year ago, a close friend's mom developed cancer. She went through the treatments and was pronounced cancer free. A couple of months later the cancer came back, responded to nothing and she passed away. She was 45.

My wife is going to be 58 this Thursday. Obviously, I would take ALS over any of the situations listed above. That said, there's just something about ALS. It's the hopelessness. It's the slow, certain progression. But more than anything, it's the cruelty. The level of cruelty is off the charts.

Rob
 
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Oh Rob you are totally correct. The level of cruelty can't be measured it is too huge.

BUT, somehow we are family here. Not a happy family smiling for the camera and playing in the sun. A family that digs in and pulls each other through every single day.

Let me tell you I scared myself into a panic in the early days after Chris was diagnosed. I had to learn to really pace myself with what information I could face.

I could never have made it through without the support of others going through the same thing.

Don't let my post count mean anything, it's taken over 3.5 years. My Chris was struck down by ALS at the tender young age of only 55. Way too young to be taken, but I had to learn to accept it. Believe me I still struggle some days to accept it on some levels!

Please learn to look at the thread title and it if looks at all suspect of being too difficult, don't open it.

I encourage newer members to just start their own threads, and stay in them at first and use the search function for specific information they need. Be kind to yourself, you don't need to be faced with the full brunt of the force all at once.

Lastly, not everyone goes through everything you will read here. My Chris for example never had bladder or bowel issues. What I'm saying is you could read a thread and start to severely future worry, but we just don't know what will happen with this disease. We do somehow move through each progression and take things on one at a time and cope with far more than we would have thought we could.

We constantly advise ourselves here to live in the day. Whatever you have today, take it and be thankful and enjoy it to the max. Tomorrow is not a given for anyone, least of all for PALS. But what you have today is everything.

We will stand at your back mate.
 
Rob, I'm about a year ahead of you in this journey. My husband was diagnosed with ALS in October 2015. I feel as though we entered our own private hell. He has a slow progressing form, but it is still relentlessly depressing to see him frustrated, weakening, and down. I cried every day for the first six months, ended up going on a low dose of Zoloft, which helps lift the fog a little.

No one can experience another person's tragedy. One acquaintance told me she understands exactly what I'm going through...her mother died of breast cancer eight years ago. I can't explain to her that ALS is a whole different monster; I will be full time caregiving in the not too distant future while she is off traveling to Italy with her husband. It IS unbearable to think about the future, no question. There are times when I have to take a break from the forum (which has been a great source of comfort) because it is too sad, and seeing what's ahead is just unfathomable. I know we will have to sell our home, and we will have to give up all of the plans we had for our retirement. I know I will have to watch helplessly as my husband's body fails him. I know I will be a full-time caregiver. Everything about this disease is cruel for both PALS and CALS. I think the people here are the only ones who can truly understand.

For now, I'm trying to do what Tillie advises - her words are so wise. I'm trying to live for today. I'm trying to do what I can to take my PALS' mind off this evil monster and do the things he enjoys. I'm trying to take time out for myself and cultivate some small pleasures in life. I still have some very down moments; this holiday was very hard. We'll have some hard times ahead, but also some good times ahead, and for now I'm trying to focus on that.

This forum has been a lifesaver for me, I think you will find understanding and support here. The other thing I have found is stories of hope; the CALS and PALS on here are very courageous people. And once in a while there is some information about potential breakthroughs, which I follow to keep our spirits up.

V
 
Rob, Tilie is so right about only reading what you can. I devoured information before ever posting here. There were times I had to walk away--I just couldn't read what was happening to people so far ahead of me. Other times, I can abosorb more. Be kind to yourself. Only do what you can.

This monster has been the ultimate humbler for me. My husband and I had never experienced an obstical that we couldn't overcome or work around. Until now. I had to learn blanket acceptance. Not only acceptance of what will come,but acceptance that I don't know which nasty twists and turns my beloved's body will take.

I just love him and care for him. I can't do anything else. I can't think about a "normal life". In many ways, it's easier when we don't have visitors, because then ther is nobody to compare our life to. Nobody to make us realize the we are limited.

I sometimes think this was done to us to mold us in some way. To teach us humility and acceptance. I just wish that a kind higher power would see that we've learned and accepted, and stop the lesson. I don't want to be forged any longer. I don't want to deal wth what's ahead. I can't even think about what's ahead.

I want to go to sleep and wake and find that it's all been a terrible dream. That's not going to happen, so this is just our life. I can't compare it to what we had or should have had in the future--it used to be too painful, and now it's just impossible. Three years in the end of this month.

Post when you can, read only what you can deal with. Don't let our collective grief rob you of moments of joy in your day. There is danger in living too much here when you can be living your life.

I'm rambling. That happens when I take my meds without eating a full meal first. The buzz is nice though!

Becky
 
Rob - we get it, we all get it. Take your time, do as Tillie suggests, stay here in this thread for now. Venture as you feel ready. This is home, this is family, no one will judge you if you never, ever post on another thread. What we all need is different and at different times. One day you could hunger for everything, the next you don't want to read anything. We get it. And as others have said, you have your back.

Hugs,

Sue
 
It often feels like a Catch-22. We desire information to enable better planning, but often immersing ourselves in it becomes unbearable and creates fear.

When my dad was first diagnosed I devoured every piece of info I could find. I attend a monthly support group, joined this forum and read every book written that I could find. At the time, it was like I had a shield around me that enabled me to do this as I was the only one in my family capable of it.

Once my dad passed, it's been very difficult for me to participate here and read anything about living with ALS. We all have to find our balance but trying times do somehow seem to enable us to do that which we think we can't.

We're here to support you any time!
 
Rob, I'm a life-long military man, so I like to think I've seen it all. But when I worked at the VA, sometimes I had to go to a private room and cry for the veteran I had just seen.

I'm been part of this forum since 2010, and still some of the posts I read make my laptop screen misty.

When Krissy was diagnosed, I learned everything I could. Scared the crap out of me. I realized that my wife, who was a doctor, already knew what was going to happen to her. But she never complained, never seemed "woe is me" or depressed. Except one time, she was quietly sitting and then burst into tears and said, "It's just not fair."

So I tried to be as brave as she was.

Then I got to work. I had a mission: to make Krissy's remaining months and final passing as painless and fear-free as possible. I got really busy, to distract myself from the sadness.

That's all I got.
 
This disease is beyond cruel!!!

In the beginning I read way too far ahead and, like Mike, was scared. But ALS doesn't follow the same path in each person and Bob never experienced some of what I had read. It truly is best to take one day at a time.

Hugs to you
Joan
 
Thanks to everyone who replied to this thread. I always dislike it when people start a thread and never acknowledge they read any of the replies. I've been hanging in there. I haven't logged into the forum lately. Just trying to clear my head...

Rob
 
It is so true.
It is so cruel that is hard to explain to others that haven't experienced how this horrible illness progress.
I look at my husband every day disappearing slowly in front of me and no mater what we do the decline is restlessly.
I am always behind in every measure.
Hugs to all
 
Hi Rob; welcome back to the forum. The members here are very supportive and give great advice. While I was active on the forum early on, after a few months I found (like you) I could not bear to read all the stories of sadness and ALS progression. It was as if reading the personal stories/posts made me "live out" the stories in my own mind. I don't know how else to describe it ...... Anyway, I only read posts once in awhile now & contribute when I can.

I totally agree with you. ALS is a particularly cruel disease. When you stated ... "I've realized that as sad as I've been, I'm in the "golden period" of this disease. My wife can still walk to the bathroom with a rollator. She can still use her arms, talk, eat and breath. The thought of what's coming is unbearable", I can relate to this so well. I am in the same "golden period" with my husband, and I know it only goes downhill from here. That said, most of the time I try to balance living for today & enjoying the time we have with planning for what may come. There are some things that we CALS know will happen (progressive weakness) but we don't know how fast this will develop. We know respiratory involvement is inevitable. However, as others have stated you can read and educate yourself into a frazzle and some types of deterioration may never happen to your PALS.

I also am no stranger to family/friends who have passed away from cancer, leukemia, and some friends who have passed suddenly without warning. I have known young people with rapidly progressive, incurable brain cancer. I agree that ALS is preferable to these situations, but this does not diminish the pain. I think the fact that we (as well as the PALS) have a pretty good understanding of how this disease plays out and this triggers terror and disbelief. I know that at times, when I first get up in the morning and glance at my PALS - the love of my life, I still experience feelings of disbelief. Part of me still thinks maybe this is a nightmare; the logical and rational part of me knows it is not.

You will find great support on this forum Rob. Come here for answers or just to vent. We've all done that! And when the regulars can't provide answers they will provide you with a listening ear, an open heart, and a cyber "shoulder" to cry on.
 
My wife is going to be 58 this Thursday. Obviously, I would take ALS over any of the situations listed above. That said, there's just something about ALS. It's the hopelessness. It's the slow, certain progression. But more than anything, it's the cruelty. The level of cruelty is off the charts.

Rob

I empathize with you, but I cannot agree. I would take anything other than ALS. Sorry you are going though this. ALS is a true sh-t show...
 
All we can do is put our heads down, move forward, and keep repeating "No matter how tough this gets, I'll be right there with you, and we're going to make the best of it." ALS forces us to become stoics, and every time we resolve not to shrink from a new challenge, we're elevated. So, despite the cruelty, there is, and always will be, hope.
 
Thanks to all of you who are able to share. There's not a day that goes by that I don't shed tears. I like to think of myself like a kettle. The steam builds and the best thing for me is to let it out and start again. Most days that works just fine.
There's is so much sadness built up in me. There's not one aspect of our lives that hasn't been touch by this horrible disease. I'm lonesome, I'm sad and soon we'll have to more to the hospice stage. To see my husband in the state he is now is so consuming. He has bulbar ALS and has progressed so quickly. He's sleeps on his Trilogy most of the day and night. I miss him so much.
 
Cattaztrophy , I totally understand what you are saying. Big hugs girl. It is all consuming. I don't think ALS ever leaves my mind and is even there when I am sleeping. I keep my sadness and loneliness to myself.

I know Steve is always positive and hopeful unless I am upset. Keeping it all in increases the loneliness. I miss talking, hugging, having him as my cheerleader, and having a husband.

I go through phases and eventually come out of my funk. We do have to make the best of it and try to find something to hope for.

ALS is a thief that's always at the door just waiting to steal something else. I have and will continue to make sure it doesn't take everything from us.

Big hugs and understanding.
 
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