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scaredwifetx

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This is a question for both PALS and CALS. It is very rare for Steve to talk about his progression and doesn't like to talk about it at all. I could tell something was bothering him tonight so I asked him about it.

He actually told me that he was really stressed out over his breathing and felt he was having panic attacks. He is not to the point where his breathing is really bad. He told me that he has problems sleeping even with the bi-pap because he was afraid of having a problem breathing. He is not Bulbar onset.

We discussed it for a while and both believe a lot of it is in his head at this point. Neither one of us believe that his breathing should be at a major point of concern right now. I do know this is not the first time in the past couple of months that he has had this fear. We discussed him trying the Sertaline for his anxiety and he agreed to try it.

I am not sure how to help or comfort him. I did tell him... that he would not just stop breathing anytime soon. He is still walking some, has limited usage of his hands and his speech is still very good. He does have weakness in his diaphragm and does very little throughout the day except walk back and forth from the bathroom to the couch. He does use his bi-pap every night.

Has anyone experienced this fear before it's really time to? Any suggestions on how
to comfort him and help him. I hate to know that he is this worried and its very hard to talk with him about any fears or progression?
 
Hi Deb,

It's great that Steve has talked to you about this.

First, we know he has diaphragm involvement and his breathing is weakening.
The numbers don't really mean much except to the doctors.
Some PALS with reasonable numbers have a lot of anxiety and can feel the effect of their shallow breathing a lot. Others with fairly poor numbers still feel quite good.
That's why we often say you go by how the PALS is feeling.

Sadly, many PALS who seem to be breathing fairly ok and are still fully mobile will simply stop breathing in their sleep and it can be a big shock if you are presuming you will watch a steady decline in breathing and know when the end is.

So his fears are quite valid - with ALS and the phrenic nerve being affected there are no guarantees and no definite patterns or order of things.

I would think he needs to consider using bipap during the day, especially if he feels a little anxious. Taking something for the anxiety is also wise. Let's face the facts - he should be kept as comfortable as possible both physically and mentally/emotionally.

Comforting him is difficult as you can't say that it's all ok. What you maybe can do is assure him that you can help him with the anxiety.

I hope that helps.
 
I dont know if this will help, but it sounds like his breathing will good for awhile. My fvc was 24% in May, and i got a feeding tube a few weeks after that ( not recommended, get feeding tube way before that ).

I am on a bipap most of the time, but frequently go off it for hours... I always feel comfortable with the bipap.

If it is mental, its understandable, I could see any of this spooking somebody... becoming paralyzed is bizarre

If its mental, i hope he finds something that helps. Try to resolve it, if possible, i know you're trying. I say this because there may be other things with progression that might induce fear.

I am not religious, but this solved fear issues for me for the past twenty years:

Prayer for Atheist & Believers: navigating expectations - Philosophy and Feedback - ALS Forums

Sorry that info is on another site... i am using an eye tracking computer, i dont if i can copy paste text with this.

Take care,

pat
 
Is it more that he thinks the BiPAP means he could stop breathing, or that he thinks it will contribute to problems? Is he comfortable with it at night, or is it a struggle?

Or maybe he is dreading needing it during the day (in which case, I would have him try it in daylight so he can see how it is done and become more of a known quantity).

I do not discount his fears. The reality is that we can't always predict breathing problems. We can only throw our best insights/technology into proactively slowing them down. The more he shares with you, the better an advance planner you will be, and I would tell him so.

Best,
Laurie
 
Hi,

Certainly anxiety will make his breathing pattern seem worse to him, making him even more anxious. It can turn into a vicious circle. I think anti-anxiety meds are the way to go and hopefully improve things. Ultimately Steve has an issue w/ his breathing atm and whether it is a reality or his perception, remains to be seen.

Does he get out of breath talking?

Take care,
Ells.
 
Deb,

I can tell you for sure that the more anxiety, fear, stress or just worry that I have over something the worse my breathing is. So the anxiety over not being able to breath becomes a vicious circle in that the anxiety itself can cause his breathing to be harder. I try and distract myself with TV, writing, Madden Football etc. Sometimes thinking to much s my biggest problem.

I believe on most BiPap you can have a second setting added to it. I have a high pressure one for night and a lower one for daytime. I still resist using it during the day, but every now and then when I am struggling extra hard with breathing I will use it for an hour or so. This can allow me to relax a little and even nap.

There is nothing easy about this trip. Progression is going to happen. It is ultimately all about how we choose to react to it. Help him (as you are) with his fears, and encourage him to mentally stay strong by not letting the fear and anxiety win.
 
Thank you for the replies. I know this can help us with understanding the anxiety and let him know he is not alone with his fear.

Laurie, he is a lot more comfortable with using his bi-pap since the changes were made by your suggestions. He uses it every night and he has started to use it for naps every day.

Ellis, yes you can tell that he details a little out of breath when talking or doing any kind of activity. I can also see that his breathing is harder.

Tillie, your advice is spot on and understood. Pete, that's exactly what he tries to do. He watches TV and plays his Xbox and only becomes anxious when he thinks to much. The strongest fear and the only one here has communicated has been about his breathing. It's the biggest fear he has had from the beginning. I have promised him that when it's gets to a point where his quality of life is really affected that we will take measures to peacefully end is struggle. He has to find a way to communicate to me concerning any major issues.
 
Hi Deb,

My husband, Frank, had exactly what you describe that Steve is experiencing. He described it as feeling like there was not enough good air in the room for him to breathe. He said that he knew it was "in his head" but it still was causing him significant anxiety, especially at night time. He said that most times he would be able to talk himself out of it but there began to be more episodes when he was unable to do this so I contacted his neurologist. He put him on Ativan, prescribed twice a day if needed but he only takes it at night. This helped a great deal but Frank also needs the windows in the bedroom open (regardless of the temperature outside) and the ceiling fan on low so that he feels like there is enough air for him to breathe. So far, this is working well.

Frank is on bipap via trach at night only. When he had these anxiety attacks, I would tell him that the machine was providing him enough air and he would say that logically, he understood that but he still couldn't suppress these feelings of anxiety.

Frank has never had issues with anxiety in the past so yet we have another unwanted thing that ALS has brought us.

Sharon
 
Hi Deb,

Sorry I don't have much to offer in advice, but (Hugs) to you.

-Nikki
 
Thanks Nikki. Support and hugs are always good.

Sharon, I hear you. Steve has nerve had anxiety and was never a worrier. ALS @#$%&
 
After reading Tillies post, my assumption that his breathing might be good for awhile might be incorrect, I am sorry about that.

I hope he can find some relief from the fear. I hope he communicates to u also.

Take care,

pat
 
Pat you are good. You did say might be. That's exactly true. Thanks for replying.
 
One of the things we have to remember too is that often when the breathing is becoming difficult it can cause the blood pressure to rise. This can cause some anxiety as it's not something you can really describe well as a feeling. As you get anxious, guess what that circle starts and the blood pressure can rise more.

As we have seen here, this can put strain on the heart - not getting rid of CO2 and higher blood pressure means the heart tries to work harder to solve the issue. The issue is the breathing muscles so the heart can't really solve it, it just works harder and this can all put new risks in place.

So more bipap and anxiety meds do more than just 'relieving symptoms'.
 
Nearly had a panic attack reading that post Tillie, like reading a Stephen King Novel. Having als can be intimidating, reading about it can be also.
 
sorry Pat, you are right it's worse than anything Stephen King could come up with :(
 
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