New CALS - totally broken-hearted

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HI Marnes

I'm caring for my husband who was diagnosed in 2016. We live in Ireland too. I remember the early days post diagnosis all too well. I had figured out what was wrong with my husband pre diagnosis (I'm a nurse) but the confirmation of MND was like being hit by a double decker over and over again. To be perfectly honest MND is the last thing I think about going to bed and the first thing in the morning. It SUCKS.

That being said, it is what it is. As other posters have said you are still in shock. The fog will lift bit by bit as the practicalities of life bang on your brain. Go with it for now and give yourself time to get your head around it.

If you haven't already, sign up to the IMNDA association and register with the online forum which will have Ireland-specific advice.

Take care of yourself

Marnes, how are you today? You are on our minds.
Welcome Miriam! You have been a CALS for a long time. Do jump in to the roll call thread, or start your own. I bet you can give lots of great tips, but let us support you as well.
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Hi everyone. Wow. You guys are such a reservoir of support. Thank you again.

st72. I am so sorry you are in this awful situation. I understand all your feelings. I can't take your pain away. But please know you are understood. I am so new to this. So it is hard for me to advise. What I will say for now is this:

This disease is so cruel and one of complete hopelessness. My expectations are lowering all the time. One new hope is that I will adjust more and function better in time and be able to carve some joy from life. I hope you can find some sort of hope too, however small. We need some bit of hope. Fight to find it for your PALS and yourself. Sending you strength.

Miriam, thank you for your lovely message and advice. I will go with it for now as you say. You can't fight it. Gosh, I have so much to say about all of this to you and everyone. But I don't even need to elaborate. You all get it. And yes, have registered with the IMNDA. I actually contacted them before DX. Not a medic, but knew. Thanks to their advice I made it my business to get into Prof Hardiman asap. Saw her within a week of initial contact. The GP would have had us waiting until April in Vincent's otherwise. Unthinkable. Prof Hardiman was so compassionate to see us so soon. And the IMNDA are angels. You are at this a long time. As Tillie says, you must have plenty of advice.

MJT - thank you. That is very kind I am on your minds. Today I have been all over the place. Barely slept. Worked as best I could. Cried a lot. Oh my, the pain. Saw my counsellor. She is amazing and helped. Then spent the evening focussing on my daughter with the help of my sister. Another angel. We did a wardrobe clear out for my little girl. She loved it, and that did my heart good. I am finding that keeping busy in simple ways helps a bit. Obviously doesn't kill the pain. And I may go overboard on the keeping busy for the next while. But whatever gets you through. Overall a little more at peace tonight. It won't last of course. But I will still take it while it's here. We will see what tomorrow's rollercoaster brings. I will aim low. Work as best I can. Parent as best I can. Care for my beautiful PALS as best I can. Be gentle as i can with myself. And try to keep some sliver of hope in something, anything.

st72 - conscious you don't have any family or friendship support network. That's really hard. Maybe consider "shopping around" for a counsellor that is a better fit. A good counsellor can help. I promise. They are not miracle workers. But they can help. So do please consider that. It's also something to do and keep busy with. And sometimes staying busy is all we have to stop us going completely fucking mad.

Strength, support, love and gratitude to you all, as always.

Hi everyone. Nearly two months post DX and I am still a wreck. On meds. Getting counselling. Etc. But not really improving. In fact today I can barely get out of bed.

Is this normal?
Marnes. Forget the word or concept- normal.
Your ALS world is unique to you and your PALS. With ALS we lose our touchstones. There may be a typical virus cold and how it runs its course,
but not with ALS.
You may have had unrealistic expectations of how you would move through this messy ALS world. Or no expectations at all and so every day is surprisingly scary.
Just remember you dont live all of ALS in one day. (Your mantra) Try to live in the present. You need to be present today. Even though you do need to educate yourself and plan for the future.
Journaling, meditation, yoga, walking nowhere may all benefit. Talking with a friend or therapist may also help. Sleeping is good. Your body needs rest. CALS take many naps because we dont get a full nights sleep.
I had a telehealth with my lcsw today and I missed it....because I fell asleep!
Peace and hugs. Kathy
Marnes, I don't think 8 weeks is an unreasonable time to despair, and I'm sure I was at the same point then. At some point, you'll have longer periods like when you cleaned out your daughter's clothes, and be accepting of your despair when it rears its head so that you get through it faster. We are 15 mos. post-diagnosis, and I can still go to a dark place. Who wouldn't? I wouldn't trust anyone that didn't.

This may sound sickeningly goody-goody, but I find gratitude✨ helps me. However, this isn't your garden variety gratitude; The Sun Always Shines Behind the Clouds!, but my own twisted version. "Well, we have ALS, and I will be the first widow in my circle, and my sweet, kind husband is suffering horribly, but I'm grateful our baby didn't drown when the boat broke apart after we paid smugglers our life savings to get us from Afghanistan to Italy."

Am I helping? You're probably heading to turn on the oven to stick your head in. Sorry.

Sending love and hope that you come to a place of radical acceptance. How is your daughter?
Are you talking with your partner about his feelings as well? Airing your shared fears and sadness might give you both a platform on which to proceed with your relationship and your lives with your daughter without losing your way. I am not saying to wallow, but rather to plant a stake in the ground.

The person you are is still the person he loves and vice versa. Don't think you have to channel it all into counseling, because for the most part, honesty [sometimes in measured doses] is still the best policy between P/CALS.
I agree with lgelb, Laurie. Tom and I had some heartbreaking sobs together, especially in the first few months. And we also laugh at this thief of a disease. When I cant understand him I say funny things. He smiles and laughs.
One day I climbed into his twin size hospital bed , I'm coming up there! Then I got stuck in the 8 inches of space I had and it took a lot more laughing to get free. Stuck in the bed. Stuck with ALS. And thank the Lord. Stuck with each other.
Thanks everyone. Brilliant advice as ever.

MJT - I almost chuckled at your "head in the oven" comment. For me, almost chuckling post-DX is the equivalent of a proper LOL pre-DX. So kudos and gratitude to you for that. And it didn't make me want to stick my head in the oven at all. In fact, I have been adopting the same twisted gratitude myself for some time now. One of these thoughts recently was: "Well, if he didn't have ALS, maybe we would all have gone on a road trip and..." I can't even commit to writing how dark that goes. But you can use your imagination.

Dark humour aside, ALL of your advice is really insightful and helpful and full of understanding. So thank you.

Again, our story is really complicated by tricky logistics and extenuating circumstances. Even my counsellor (really experienced in ALS) agrees it is a total shit show. But hoping that once we get one particularly giant boulder out of the way, we can make a plan for being under the one roof, scaling back work, and making the best of the time left, etc. Hopefully the universe will be kind to us in that way at least.

F*** this disease so hard.

Please excuse my French.

Love, strength, support and gratitude to you all.
Oh and my daughter is OK thanks. I know she is worried about me and her beautiful bonus dad, and has seen me in bits. But on balance she is OK so far, thanks.

And yes, talking and sharing with my PALS. But it's a fine line between sharing and burdening further for us both. I am sure you all know what I mean. But yes, honesty as the best policy in measured doses - excellent advice.

Thanks again everyone.

I sorry your are here and I feel your pain. My husband is my PALS and he was diagnosed in November 22. There was life before and life after that day. I cry every day on the way to work and again on the way home. Talking to a therapist has helped me to continue functioning but the pain and fear is still there. If it wasn’t for that and having to keep it together for my 3 kids, I’d hide away in bed all day and cry.

Someone mentioned a FB group for PALS who are spouses. I would be very interested in joining that group if someone could PM me the details.
Oh Iscah1. I am sorry you are here too.

A job and 3 kids on top of ALS is an horrendous load.

I was pm-ed the details of that group. Have contacted and heard nothing back. That's not a complaint at all btw! If it happens, it happens. We all need to do things in our own way, in our own time, and at our own discretion. No pressure from me.

I don't want to send anything out as I would feel like that might be acting above my station.

I am sure the relevant parties will share with you if they are ok with it.

Regardless, you are not alone. Sending you lots of love. ❤
catching up...I wrote this ?? but forgot to push the button to post it. sigh Iscah, I'm sorry that yu are one of us.

I'm so relieved to read your post. I'm as worried about your daughter as I am about you. As this is public, don't share, but in my mind, your daughter is 8. I can't imagine having a young daughter to worry about in the middle of this mess. My hope for her will be that she comes out of this horrific experience with a firm foundation in resilience, though it sounds like you've already modeled that for her.

In our house, dark humor rules. (and yes, all of the F---s)

My mantra is; I'm lucky I have so much to lose.
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