My husband is dying....

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kwmechelle

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CALS
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Norfolk
My husband and I got married 15 months ago. He was diagnosed with PBP 4 months later. It's been a nightmare. I'm depressed, even suicidal at times as I think about having to go on without him, having to start over in life, being both a newlywed & a widow at the same time.

His FVC measured at 27% last week in his clinical trial. He just completed the Healey trial and is now on pridopidine- or drug D. He does use a trilogy at night while sleeping. We've been told to learn all we can about a tracheotomy. He was put on a feeding tube about 4 months ago. His speech has been gone for sometime now.

Occasionally, I see traits of him that are so different from the man I fell in love with. His personality has changed a lot but I've learned that this is likely the disease and not a new personality. He has chronic asthma. We only dated for 2 years before we got married. Feels so much like we had a wedding and now a long funeral. We never really had a marriage. Some how, I'm supposed to pick up the pieces once he's gone and keep on living life.

I'm in therapy. We meet every two weeks through zoom. I have never felt more defeated in life. We're each only 44 years old. His birthday is next month but I'm really not even sure he'll live that long. And the lake of fire that I feel like I'm burning in just gets hotter. Glad I found this site yesterday. Glad to connect with people who know exactly what this feels like.

Before the Healy trial, he participated in the AT-1501 trial where each patient received the medication and not a placebo for 6 months. We actually believe that the infusions in the trial slowed down the progression. And once it ended, he began to take a nose deep dive that's not letting up.

I feel defeated. I feel like the wind has been knocked out of me. I feel like I'm hemorrhaging. And deeply traumatized. I feel knocked down. And I don't want to get back up. :-(
 
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affected

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Really sorry to welcome you here.
My Chris was diagnosed young also, and symptoms started within a year of us marrying.
I'm glad you are seeing someone for yourself, are you also taking any meds for depression?
This disease is indeed deeply traumatising, I'm glad you have found us as we totally get it, every single bit.
 

rmt

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I'm so sorry to welcome you here but I'm glad you found us. This forum has helped me tremendously. Antidepressants have helped me, as has finding people to talk to that understand exactly what you are feeling. You are not alone.
 

kwmechelle

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CALS
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10/2020
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US
State
VA
City
Norfolk
Yes, I am on antidepressants. And thank you for welcoming me. Huge hole in my heart and soul.
 

lgelb

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Very sorry that you find yourself here, K. While it's good to learn enough about a trach to know if it's what you guys want or not, an FVC of 27% is not the whole story of his breathing. With appropriate settings (that should be adjusted as he progresses), some PALS live years at a similar level, without a trach. It's more about which muscles are weak, how others compensate, and how well the body adjusts to reduced lung capacity, than that arbitrary number.

The fact that he is only using the Trilogy at night, though, with that FVC, suggests that he might want to try using it at times during the day, which will rest his muscles more, and possibly delay getting to the "trach or die" fork in the road.

We will support you however we can. But if the twice-monthly Zoom therapy is not enough, especially if you feel suicidal, please look for other help. Everyone with Internet has options to see a mental health clinician via telehealth on demand. Also, please make sure you are eating and getting "enough" sleep, whatever you have to do to make that happen. You're too important to him not to make sure you can be there for him.

Best,
Laurie
 

Nuts

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K, You have found a group of people who understand your pain--I found this group the night my husband came home with his diagnosis and it saved me. You will receive a ton of information from extremely experienced and knowledgeable people, but I'd like to address your pain. I lost my husband three years ago after a five year journey, and although I've come to accept that the pain will never go away completely, but it is manageable and life has become livable. It does take work.

The biggest truth I've found is that while we cannot change our reality, we can try to change the way we think about it. If you think about it differently for awhile, sometimes you start to feel differently. Imagine if your husband had never met you and was alone at this point in his life.

While it will be a very short marriage for you, it is for the rest of his life and he is blessed to have you. He is blessed to not be alone going through this. I hope that you can make some sense of what seems senseless by focusing on how important you are to him. Frankly, it's the only way I survived. Had I stayed in that place where I focused on my loss I would be no good to anyone, let alone myself. If the antidepressants aren't working, talk to your doc about dosage or another medication, and continue to do as you have done--vent.

Much love to you. This is an unimaginable tragedy and the best thing you could have done was to find people in the same situation to share the journey with.
 

affected

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I will just second what our beautiful Nuts said.
I am still devastated on the one hand that I lost my Chris, especially so soon.
On the other hand, I am so glad I met him and was able to be there with him in the last few years of his life. I cannot bear to imagine what that would have been for him had he been alone, with just his children who were teenagers and very young adults, trying to cope. He lost his first wife at only 41.
That helped me feel like there was a little something I could hold to. Since then, I have found a lot of comfort in helping others.
We all find a different way to cope and to grieve after, but we do it best when we have others.
This place was my absolute rock and home while I was caring for Chris, I can't imagine doing it without the ones who were with me here.
 

Mary2

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K, Sorry to welcome you here. This forum has been a great help and support for me. My husband uses the Trilogy 24/7 and is comfortable on the Trilogy. I understand your pain. Watching your husband/ PALS decline is very painful. We are both on antidepressants and they are helpful. We try to spend some quality time together each day...often an audio book...some time when I am not the caretaker, but a wife and spouse. My heart goes out to you. You are not alone, we are on this journey with you. You have done a great job finding research trials to be part of and by reaching out to us and others you will continue to have the strength to care for your husband. Sleep is a must! Stay strong! Reach out for support!
 

kwmechelle

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Messages
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Reason
CALS
Diagnosis
10/2020
Country
US
State
VA
City
Norfolk
I feel like with every new symptom, with every symptom that gets worse, with every new change, I crash & burn all over again. It’s brutal. My husband is a veteran & his dad mentioned something about the funeral & I felt shell shocked. I hear you. But the loss is huge. The loss is great. I cannot believe that when he’s gone, I’ll have to start over in life again. But this time without him. Sometimes I crash and burn. I’m just venting. It hurts. I know he needs me & I’ll be here. The funny thing is that no one says that I need him, too. But I do need him. Being here for him is a good thing. Yet how my heart aches. My heart aches 💔
 

rmt

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K, if your husband is a veteran, his ALS is considered 100% service connected and he is eligible for MANY benefits. Our local Paralyzed Veterans Association helped us get all the paperwork in and my husband gets all his ALS care from the local VA for free. All his tube feeding food is covered (as was the feeding tube procedure), we got a tablet for communication, and any mobility devices will be covered as he needs them, and there are grants to get your house remodeled as necessary. Plus he gets a disability payment every month. The benefits for veterans are incredible. I highly recommend contacting your local/state PVA to get things going.

I'm almost 4 years into my husband's symptoms and I still crash and burn on a regular basis. Most of the time, I can't imagine life without him. Sometimes it hurts too much to even think about it. Other times I can try to plan for what it will be like when he is gone. I've only recently started having "real" conversations with my parents about what life may look like in the future. But I'm still working hard to make right now as good as possible, for both my husband and myself.
 

affected

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Yes, your feelings of huge loss and grief are so real and so valid.
I think most everyone tend to focus on the PALS, as we do, and while there is good reason for that, you also need to be able to vent, and to have your feelings and the gravity of your situation acknowledged.

I won't tell you any of it is easy, I sometimes marvel that I survived it all.
I don't think there is any more isolating that being a CALS.
I would do it again if I had the time over, but I still don't ever talk about any of it with anyone other than other CALS. It is impossible.

So this is your thread here - you can vent all you want here and we will walk with you.
 

Nuts

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Let me echo Robin's comments about the VA: if your husband is a veteran, there is a TON of help available. I do not know how the Hampton VA handles their vets with ALS, but the Durham VA was AWESOME. If you haven't reviewed the information in the veterans with ALS subform, please do right away. Then have your husband contact the Paralyzed Veterans of America to help with enrollment if he is not already receiving care from the VA and disability payments. This is not only important for both of you right now, but it will also provide benefits to you after he is gone. Please reach out if you have questions---in the world of ALS, the VA is a game changer, but your husband may now need an certainly in the future will need your help in accessing the help that is available.
 

KarstBoy

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<quoted text removed>

No joke, the VA really comes through for ALS vets. If you have at least 90 days of service (IIRC), you will be declared 100% disabled. It opens up a world of expert help and financial assistance to help fight the effects of this disease. The folks we've interacted with at the VA have been the most dedicated, kindest folks imaginable. I can't say enough good about them.

As stated above, contact the local PVA (Paralyzed Veterans of America) to get the ball rolling. It is probably located in the local VA hospital (that's where they are located in the Dallas).
 
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Lkaibel

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I am so sorry this is happening to you both. You definitely came yo the right place.
 

CJV

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Sep 22, 2021
Messages
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PALS
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01/2022
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I lived it, too. And now I’m diagnosed myself. It’s cruel, and you have every right to be freaking pissed off. I know what you’re feeling, my husband was 49. My heart is with you.
 
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