Anyone here with respiratory issues?

[starente15]

My dad was diagnosed with bulbar onset last October. They believe his first symptoms started in January which means he's a year into it. He's had respiratory issues for
At least the past six months. I was wondering if there was anyone here dealing with the same thing. I go to a local support group but havent found anyone else in the same situation. Would love to talk to someone who's been here. TIA!

 

[Nuts]

Star, the forum is full of posts about respiratory issues. Have you tried searching? If you aren't able to find anything that way and you have specific questions, go ahead and ask them.

 

[tripete]

Star, mine was diaphragm onset. I continue to struggle with breathing problems. I am hoping to get some answers next week and to maybe enroll in the diaphragm pace maker study.

 

[starente15]

My mind is on overload and I don't even know where to begin.

I guess the first thing that worries me is that I know over time people need the bipap more and more. My dad is resistant to becoming "dependent" on it and I think he goes too long before using it. My mother has said she thinks his breathing has gotten worse in the past month but he still only uses it to sleep, an hour after lunch and 2 shorter durations during the day. She can tell he's uncomfortable and struggling but fighting it.

I suppose over time he will come to terms with needing it more because he will feel the air hunger? I hate watching the struggle and worry that he's in discomfort. Can a palliative nurse do anything at this point or is it too soon?

 

[Nuts]

Star, I don't know how to link to another thread on the site, so I've copied something Tillie wrote on one of my threads. As I understand this, using the bipap does not increase his dependence on it, but it will make him feel better and help all of his systems function better, which may in fact help his rate of progression.

Ultimately, the PALS must make the choice. If you insure that your parents are knowledgeable about their choices that may be all that you can do. Sometimes the choice comes down to accepting a shorter life in return for doing what they want in the present. That's a hard one for us, but it's also a difficult decision to argue with--so long as they understand the choice they are making.

Becky

From Tillie:
" The studies apparently show that using bipap early gives far more effect than waiting until breathing is very low.

I don't know that it prolongs life for our PALS by a large amount, but I do know that it improves the quality of life enormously.

If a PALS is having trouble breathing this is going to have to impact on every other area of progression - they will have less energy, walking will be harder, falls more likely due to the extra fatigue and being less focused. You know how much harder everything is if you are really tired, so add that to trying to use wasted and/or spastic muscles.

So the more you can help the breathing, the better the quality they will have, and maybe affect progression by being safer and having oxygen saturated muscles rather than CO2 saturated ones.

I would go the sip and puff!

This is where Chris always wanted everything only when there was no other option. So he was emaciated and dehydrated and barely consuming any calories by the time he took the peg. The peg never helped him that much as a result.
He finally requested bipap only 2.5 weeks before he passed, after a pneumonia. Too late and we had to abandon even considering it.

So go early for everything, it will give better quality at the least!

 

[starente15]

Thanks Becky. I've tried to explain to him that using it more frequently will help him feel better overall. I tried to get a sip and puff because I thought he might be more open to using that as needed vs. knowing he has to sit for a half hour with the mask. I was told that medicare won't pay now because he has use of his arms but he could pay out of pocket if he wanted it.

He doesn't talk about the disease or how he's feeling so one can only guess based his actions/facial expressions. I wish I knew what he wanted and what his 'plan' was. We have an advance directive but all it states is that he doesn't want to be vented or on life support. If we bring up stressful topics he gets agitated and says we're making him nervous so no one can ask questions.

I just hope that by avoiding the machine he doesn't experience some type of respiratory distress that lands him in the hospital.

 

[affected]

Star {{{{hugs}}}}

Since you are his daughter and not living with them, in some ways you can only really rant here to release the awful build up of anxiety it is for you because you can see what is going on and what is needed. We will keep giving you suggestions, but the fact is that they may refuse to listen to, let alone follow through with most of them.

It's hard to know if he truly understands choices he is making or if he is clinging to denial, but either way it is his choice to make, no matter how you heart bleeds over it. At least we can understand when it is so painful for you to watch.

He may land in hospital, and that is not always a good outcome as they often don't understand ALS. On the other hand a pulmonologist may then get some important points across to them.

It's tough watching the decline

 

[starente15]

Thanks Tillie! I know you're right. It's so hard and will never get easier.

 

[lgelb]

Star, I think I mentioned before that you can buy a 15mm angled mouthpiece for <$10 that he can use to "sip" without a mask. It fits on the end of the hose. So Medicare's refusal to pay doesn't prevent his trying that.

 

[cheerleader]

Star, know how concerned you are, and what a loving daughter you are. Unfortunately, you are walking a fine line between being supportive and being over zealous in your attempts to help. In my own experience, my two wonderful grown daughters sometimes made me shake my head that suddenly they thought their dad and I had become senile overnight and unable to handle situations and decisions on our own. They may not be sharing all information with you. Guess the point I'm making is you may not always agree with what they are doing but if they are still bright, competent people, you can share things with them, but them step back and let them handle it. They will ask for help when they need it. You don't want to add to their stress by making them feel you don't trust them. (And this is said in a loving way from a mom who knows you only want to help!). Hugs to you.

 

[gooseberry]

Starente, I agree with cheerleader and I am not piling on. It is very hard to sit back and not jump in to take care of things. But this is your dad's disease and his decisions.. It is a very tough path sometimes to accept what the pals ask us to do when we don't agree. But out of love, we do it. All you can do is provide him with the information on both sides of his issue so he can make an informed decision. Your mom may already be doing that but you could ask if it would be helpful. This disease leaves us all feeling like we need to do something and I know you are trying to because of your love of your dad. Hang in there. Hugs to you

 

[starente15]

Thanks everyone! I know, it's a slippery slope. While my parents are still competent, they've never asked questions of doctors. Ever. They feel if there's something they need to know, the doctor will mention it. Knowing that you have to stay ahead of this disease, having that mindset could be detrimental so I get anxious.

When he first needed the bipap, several weeks went by and when I asked where it was, I was told that no one had called them yet and they were still waiting. This happens with everything, test results, medication, etc. My personal experience with doctors offices is that if you don't follow up, stuff probably isn't getting done.

At this point, I do what I can with that situation. As far as denial, I believe that they may never accept it. Tonight my mother said he was doing good except for his breathing problem and he heard that and said he doesn't have a problem

lgelb, could you tell me where the mouthpiece can be purchased?

 

[Nuts]

Star, sounds familiar to me. Not wanting to pester and not understanding that people are so busy that you mustf follow up. Such a difficult path you have. Just keep in mind that you can only do what you can do. Hugs.

 

[gooseberry]

Star, My husband does the same. What ever a doctor says he agrees to....no questions asked.. I ask all the questions and the docs don't like that. Why are we doing it, what benefit, side effects, etc. Basics really. Now the ones that know us just go through it all so we don't ask. I, too, follow up on timeframes for things. Sometimes I think that is the only reason things happen.

 

[NolaJen]

My dad started with a Trilogy home vent. He initially could go 6-8 hours without it, and was able to eat without it. As time went on he needed it more and more, and eventually was on it 24/7, even when eating. Breathing difficulty is scary, I would imagine your dad will use his machine more as he needs it. I'm sorry, it is very difficult to watch.