What should I be expecting to happen now?

[Jules17]

This is my first post in the forum. Although my husband was diagnosed at 38 years old, and 6 years ago already.
I never posted before because I just couldn't bare to read what was coming. However, it is now a point in our lives when I think that important decisions will need to be made, and I before this happens I need and want to understand what is happening to my husband's body.

He started using a non-invasive respirator 3 years ago now! When his FVC (force vital capacity was already below 50%). He only uses it at night, and he has can swallow ok, but his voice is low and his breathing very compromised, as far as I can tell. My worry is that he seems to need to lay backwards on his wheelchair to help with his breathing. I am quite confused about that part, as I always read people affected by ALS usually struggle breating when laying back. So why would he need to do so? Also, he has no headaches, and neither feels drowsy during the day.

I just thought I would post this in here to see if this stage is common with most ALS affected people, and whether it means that he would need a more invasive form of respirator soon (alhtough I know he does not want to go that route....). And I am sorry I post all this questions in here, while you might be thinking that I could just ask him.... But the truth is that he will not tell me the truth, to spare me from the pain.

Thanks for reading this. xxx

 

[lgelb]

Hi, Jules, sorry to welcome you here. And you don't ever have to apologize for asking questions or expressing yourself here.

Your husband's BiPAP will need the settings to be adjusted over time as his breathing changes. Since he is having difficulty, I would ask about that or if you can post more about his machine settings, I can offer suggestions.

You mention being 6 years in but your profile mentions diagnosis last year?

It's true that most PALS have more difficulty lying down, but the fact that he seems the opposite doesn't necessarily signify anything in particular about his progression. It could be in his case that the muscles that are strongest in helping him breathe work better when they are elongated or that his lung capacity is expanded that way. It could also be that he expends less energy in that position, so he has more energy for breathing.

Feel free to tell us more about yourself and your husband -- we will support you however we can.

Best,
Laurie

 

[soonerwife]

Sorry you find yourself here Jules and sorry to hear about your husband's dx. Laurie is the best person on here to answer you about breathing issues. I can't add anything but wanted to welcome you.

 

[Jules17]

Thanks a lot for your replies. I really appreciate it.

During the last years, when I tried to understand what was happening I always turned to the internet, rather than forum. I have an advanced science degree and did not find it too difficult to pull out scientific literature to try to understand what was happening, and how it was progressing. I noticed that before his condition deteriorated to a point when he needed walking aids, or help with eating and drinking, watching videos or reading of other people’s experiences made me feel very anxious. I just couldn’t imagine that what I was seeing and reading would be happening to us. “No way! Impossible, I can’t do this!”. So, I decided ignorance would work better for me, and I would build my own “ignorant” day to day rather than suffer the panic of reading online what I was about to experience. But I am here now. And I don’t know what others experiences are, but the internet has provided me lots of valued information, although since I started searching for more concrete developments, I hit a wall. When I search for advanced breathing issues I always end up with similar generic answers, the ones we all know. That’s why I thought the forums, with people that have experienced similar developments, could be a well of wisdom I could turn to.
As I mentioned in my previous post, my husband has used a BiPAP for 3 years now. Since September 2014. At that time it was given to him as he was very drowsy during the day, and could fall asleep while facetiming with his mom… He has already wheelchair bound (his ALS was limb onset). Since then, his sleep improved, and besides the discomfort of not having mobility at night to turn himself and release some of the pressure on parts of his body, he wakes up quite refreshed. He does not use a BiPAP during the day, and as far as I can tell he will chose not to use it, at least it is not his intention at this point.

Since the beginning of this year, his breathing is a lot weaker, as it is his voice. It has been this year as well, that he has started to reclined his wheelchair backwards, and needs to do so quite often. I know he does not want to worry me, and wants to spare the distress, but I just don’t really understand why he is leaning back (since this is supposed to be worse, isn’t it? And isn’t it that people affected with MND struggles the most breathing when lying in bed?). He does not want an invasive respirator, and I am sure that if the doctor would have been more honest to him about the BiPAP he would probably have avoided going down that route, but this is a different story for now. I just feel he will get very stressed out if he cannot breath, and how will his choice of not wanting to use the BiPAP during the day can hold if in the near future he feels he is suffocating. No one would be able to reject putting a mask on, that is sitting next to you, and that guarantees to alleviate the suffering, wouldn’t they? But if he starts using the BiPAP during the day, would it also get to a point when it is not sufficient, and he needs a more invasive one? If his breathing is so weak, will the heart give up before he suffocates? Can this happen, now? Can he already have a heart attack? Also, his oxygen levels seem ok during the day, that is what the nurse told us when he visited him last week. I feel we are in the last stretch of the illness, but I have also felt this way for the last 4 years. Before the doctor gave him the BiPAP I thought he didn’t have long to live. I am so anxious and stressed when I see him lying backwards trying to catch a better breath, and I feel so powerless for not being able to do anything to ease off his discomfort. And guilty that he has to avoid telling me the truth to protect me, while it should be the other way around.

Thanks, Julia

 

[Barbie]

jules don't waste time with guilt. Sounds like you have been doing everything great up to now...

there is a point where no matter what you do, bipap doesn't help enough. as far as laying back, He is doing what he thinks feels best to him. how about you suggest he use the bipap when he is have trouble catching a breath during the day. that was the next step for us as well. first it was just at night, then at naps too and then when he was tired and just relaxing or watching TV. my husband was slow going like yours sounds. my husband resisted the bipap during the day, but it really helped. yes, if he continues to decline the bipap could become insufficient but that is a bridge you have to cross down the road when that happens.

I don't know about the heart attack, I don't think that is something you need to add to your list of worries. I don't know, but I don't think a heart attack can occur because someone is struggling to breath. they are two separate issues. most pals die from breathing issues, yet they do not have heart attacks. I know in my case, I think my husband's heart did just give up--lack of air, too thin and weak. I would not call it a heart attack though.

welcome and best of luck