what is happening now?

[Guest]

I rarely post anything. I cannot remember the last time I did; mostly I just couldn't bare to read what was coming. My husband was diagnosed 6 years ago. It is now gotten to a point in our lives when I think that important decisions will need to be made soon, 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 ventilator (Nipi) 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 MND- 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 down 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

[Dude]

hi ndjf does your hubby have a living will that list his wishes. Eg do not resucitate, no feeding tube etc. I made one nine years ago. I have to switch pc off now but I'm sure you will get helpful advice later tonight. Dude xx

[Guest]

Lying flat indicates lack of oxygen to the brain, lying backwards is the heart, The weaker your heart the further back you have to lie ,so your heart can pump oxygen to your brain and lungs.
Your breathing will be affected if your heart is weak as it is not pumping as much oxygen My mother was given the information that a lot of people with motoneuron disease choke when they die. Did not happen to her and it hasn't happened to a lot of people I am autistic There is a saying if you meet one aspie you've met one Aspie ( shortened term for people labelled with Asperger's syndrome).
It's the same for motor neurone disease ,what is happening to your husband is happening to your husband ,apart from having Motor neurone disease and it will still be unique to him -your husband was unique so don't presume that would've happened other people will happen to him as though he was an exact copy of them.

[Terry]

Hi NDJF;

If he doesn't feel drowsy during the day then I reckon there is no need for additional ventilation.

Many of us don't use the upper rib area for breathing and the muscles that control our organs do a poor job. This leads to some of us having bigger bellies and when sitting this all gives less room to diaphragm breath, especially after eating. By reclining a bit gives that area a bit more space, thus enabling him to breath deeper easier.

That's my theory.

Please post a little more.

Love Terry

[MNDConnect]

Hi NDJF

Has your husband had an assessment by a respiratory specialist recently? If not, or if you are concerned that his symptoms have changed and his breathing is compromised then it might be a good idea to ask for a new assessment.

It's difficult to say why he finds lying backwards easier to breathe. Like Terry mentions, this could be due to helping with the movement of his diaphragm.

Please do not apologise for asking questions. You are always welcome to post any questions that you have or please do feel free to give us a call on 0808 802 6262 and we'll be happy to answer any questions that you have.

Best Wishes

Rachel

[NDJF]

Thanks you all!

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 MND 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 didn'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?). I understand some of the reasoning from the posts above. So thanks for this.

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.

He does not want to be resuscitated, I know that. He wants no invasive respirator or feeding tube, but he has no living will about the last 2. He has just told me that. He has it documented (by the hospice - he goes once a week, for the day only) that he does not want to be resuscitated.

[Ellie]

Hi ND,

Sorry you are feeling so stressed. It's a frightening time for you.

People can live on 24/7 BiPAP for years. Lying in a reclined position is more comfy for breathing (especially after eating) and is much different to lying flat in bed. I wonder when the settings were last checked or changed on hubby's BiPAP?

He might find that even using BiPAP for a short time after meals will improve his breathing for a few hours and perk him up, mentally and physically.

If it comes to the stage he is struggling to breathe ("air hunger") meds to relax his breathing, usually morphine, are given. He won't be left in a distressed state.

Is there someone in the hospice you can have a quiet word with?

Love Ellie.

[MNDConnect]

Hi NDJF

As Ellie says, if your husband chose not to use the NIV, he would not be left in a distressed state. There are various medications that can be used in that situation to ensure that someone is kept comfortable.

Speaking to someone at the hospice is an excellent suggestion as they can provide such great information and support. Please do also feel free to give us a call and we'd be happy to talk through any concerns that you have.

Best Wishes

Rachel

[NDJF]

Do you think he could suffer a heart attack? I mean, does this happen to people affected by MND at critical stages, let's say, just before they should consider increasing their air flow by mechanica means?

And thanks for the advice about the hospice. I have just contacted them.

[Ellie]

Jules, he is unlikely to have a heart attack from his poor respiratory function.

I am going to be honest as you've asked the question twice now: most of us with ALS die because our breathing muscles just get weaker and weaker, and are not strong enough to sustain life.

I don't know how your husband is functioning, but from the little you've told us, he doesn't sound as if he is struggling to breathe.

Are the hospice staff concerned? Have you recently been to Clinic or for PFTs (pulmonary function tests)?

I'm just wondering if something sparked this worry.

Love Ellie.

PS. I was same age as Zac at diagnosis...

[MNDConnect]

Do you think he could suffer a heart attack? I mean, does this happen to people affected by MND at critical stages, let's say, just before they should consider increasing their air flow by mechanica means?

And thanks for the advice about the hospice. I have just contacted them.

MND does not cause heart problems so there would be no reason to think that your husband may have a heart attack.

I'm really pleased that you have contacted the hospice. Do discuss your concerns and questions with them and please do know that you can always contact us here at MND Connect for anything.

Best Wishes

Rachel