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scaredwifetx

Very helpful member
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Joined
Jul 25, 2015
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1,606
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Steve has been having problems the past few days with his breathing. He says he feels like he cant catch his breath. He uses the Trilogy every night for at least 7- 8 hours. He does very little during the day and most of the day just heads straight for the couch. He only gets up for bathroom breaks.

He is still walking with a cane, talking and generally doing ok but he has trouble catching his breath. He says it feels like he can not breathe deep enough. Mind you he has not got a peg yet and basically he does not feel like its time.

If he is not bulbar onset I wonder why his breathing seems to be declining faster than his body is. I also know he really fears the loss of breathing and has stated that he knows his breathing will be the end of him. He is very pale but is not losing any weight right now. I am confused as what to think or do. I also believe that because he fears not being able to breathe...that its making him think its worse than it actually is.

He does not have clinic again until late October. Should I make an appointment with his doctor? How do we know if something is going on? I am scared that we are not doing what we should be and that he will not be able to get a peg because he has waited to long.

I know he does not want to go through the battle of trying to breathe and made it clear when diagnosed that he could not deal with not being able to breathe. I also know that he doesn't want to talk about any of this. How do I figure out what we should be doing and make him understand that he just wont stop breathing this quick? I hate that we are not better prepared or that we know when something is seriously wrong.

Does anyone have any suggestions?
 
Yes, my suggestion is that his fear might have a factual basis (or at least that's a proposition we can test without waiting for clinic). Spending the day on the couch when he can still walk further suggests that. Has he tried the Trilogy on the couch to see if it helps?

There is no ironclad rule around the body and breathing declining in sync or sequentially with limb onset, and FVC doesn't always correlate with how well breathing works, as I think you can see from everyone's record of losses. Maybe there is an element of the power of the suggestion about this, but it is worth reassessing the Trilogy's contribution as well.

Send or post his current settings if you want --

Best,
Laurie
 
Bulbar is to do with the nerve supplying the tongue, so it causes swallow and speech issues. Breathing is to do with the phrenic nerve that supplies the diaphragm, and nerves supplying the intercostal muscles between the ribs.

It's true, there is no set pattern as to which nerves will be attacked in which order. This is why some PALS pass while still walking or still having hand function, or still fully talking and swallowing. No matter where the onset started, the breathing can be affected at any point and it can be rapid.

The loss of this function must be very frightening. Unfortunately if the PALS feels anxious, the bodies response is to breathe more shallowly and rapidly. As we know, then the main issue is getting rid of enough CO2.

It sounds like he needs his trilogy through the day, but also you could look into some clonazepam as tiny doses reduce that feeling of fear or panic and they tend to breathe better. Yes in high doses it can depress the breathing, but in tiny doses it will improve it.

I would get him an appointment as soon as you can and get this all checked over so they can give him information on exactly what is happening and what his best options are.

So sorry for both of you, it's just beyond cruel xx
 
I agree. Try the trilogy and call the clinic on Monday. do you have a nurse there you can contact directly? It could be something else but I would check there first
Hopefully he will feel better with the trilogy on. I know it is against his nature but try to get him to conserve energy
So sorry
 
If he is lying down on the couch that will not help his breathing if it is diaphragm related. I sit in a recliner most all day. Make sure he is sitting in an upright position. In bed the head should be elevated even with the BiPap. As others have said bulbar and respiratory onset are not the same thing and this disease can attack any part of the body at any time.
 
Hi scaredwifetx,
I have been on noninvasive ventilation for five or six years and I have found that I have been able to rid myself of any sense of shortness of breath by using the trilogy 24 hours a day. I would suggest that the trilogy be set in the mouthpiece ventilation mode (MPV) in consultation with your ALS center’s pulmonologist. With the proper settings the symptoms of shortness of breath should resolve with continuous use the trilogy as long as the settings are optimized and the symptoms of shortness of breath are solely due weakness of the diaphragm due to ALS.
Should this approach not resolve your symptoms of shortness of breath I would then ask the pulmonologist to do a complete set pulmonary function studies to help rule out any other pulmonary causes of shortness of breath.

Best wishes

Eliot.
 
Thanks Everyone. Laurie, He has not changed his settings since you helped us a couple of months ago. Nikki, we don't have a nurse. Medicare let him have one for about two months but stopped it. It was useless anyways as the nurse who came each week...actually asked Steve what ALS was.

Pete, He does sit up on the couch and has to go to the bathroom a lot. He gets up and down all day long but basically just for bathroom breaks.

I only see signs of breathing issues after he comes back from the bathroom or takes his shower. We both agree that he has a fear of the breathing part of ALS so might not be as bad as he thinks he is. We also think he could start using it some during the day.

Tillie, He started on Sertaline about two weeks ago and is only taking a mild dose. It was very hard to get him to agree to that. He will not agree with any other anxiety drugs at least right now.

I also wonder if getting him out of the house once in awhile will help him. I just cant believe that staying indoors all the time can be good for him.

Steve is just so afraid to talk about this disease or even think about it. He just wants to act like nothing is wrong most of the time. Even after admitting something is wrong...He will turn around the next minute and say he is ok. It is VERY hard to manage his disease or get him in to the doctor because it would mean that he has to admit he is progressing.

I always battle internally and wonder if I am doing a good enough job. I don't make him do anything he doesn't want to and end up turning a blind eye.

I hate ALS. Theres no rhyme or reason with it.
 
Hi scaredwifetx, Jim started using his bipap machine at night, & then progressed to the day as fatigue took over. His need for non invasive ventilation came upon him quickly and early . He simply can not lay down , he will stop breathing. We have learnt to use different masks and different machines. Earlier on, we needed to have a portable machine too, so we had confidence to go out. It was " just in case we needed help with breathing then"... Now it is essential.like Tripete, Jim now spends all day in a recliner chair or electric chair. We have travelled ( for want of a descriptive word) 27 months with ALS/ MND now and 21 of those have been with non invasive ventilation. Our advice is to ask for a peg now! We missed our opportunity, as with no early bulbar signs, we didn't think we needed it. Now, we r very cautious eating and madly trying to keep the weight on. Thinking of you!
 
Deb, how is Steve doing?

Since Eliot brought up using a mouthpiece, which some do better on or find less confining, just my periodic reminder that any BiPAP becomes a daytime "sip and puff" by swapping out an angled 15mm or 22mm mouthpiece (depending on your hose size, which is most often 22mm, but Circadiance sells a narrower piece if you are looking for less weight) for the mask, and turning off the backup rate and target volume.

Because it is often not only the diaphragm that can be weak when doing the work of breathing, it can be more the quality than quantity of breaths that best addresses the "can't take a deep breath" feeling. That is why I try to look at the settings first, as frequently the PALS is being over-pressurized and/or rushed and therefore cannot get the full benefit of each breath. [sorry, Deb, our posts crossed, so I see that you think the settings we arrived at are not the issue]

I would also note that MPV is not right for everyone, though I am happy it's working for you, Eliot, as it is for one of our other longtime contacts (Tim, Paulette/zoohouse's husband).

Best,
Laurie
 
Aussie, are you saying he is being refused a PEG? When done in radiology by an experienced interventionalist, there are case series where the FVC has averaged as low as 17%, so long as the pt has his PAP during the procedure.
 
Hi Deb. My husband also has shortness of breath after showering and toileting. His pulmonolgist analyzed the stored data from his BiPap and determined that the settings were fine. The doc ordered tests for CO2 and a sonigram of his diaphram. The results came back and although it a relief to know that the CO2 is okay it was sad to find out that the right side of his diaphragm is now paralyzed. You may want to have Steve's pulmonologist run some tests.

vw-fl
 
Deb it's really common for PALS with FTD to withdraw and to fixate on just doing routine things like spending all their energy walking to the bathroom, but refuse to outside for some fresh air.

I can tell you those frequent walks to the bathroom will be taking a huge amount of energy for him. It seems like he is doing so little, but it will be a full workout for him with compromised breathing.

Please don't feel like you should have some magic power to take over and fix everything.

Sorry I do remember he started the Sertaline and his aversion to drugs.

I would get him checked over, even for your own peace of mind that you know where his breathing is at. Even if he refuses the best help with this, you will know what is going on. xx
 
Deb, Im sorry. I hate ALS too. All these guys have such good info, I find it hard to say anything else...they've covered it well. We didn't have alot of trouble breathing til in the last 6 months. Tracy would describe it as elephants...sitting on her chest. We used the trilogy all night everynite, but when she felt she needed it during the day...she would go get on it til the feeling passed....sometimes napping during. She was scared of that part too...understandably so. We also got a pulse-ox finger thingy from Walgreens, that would give an immediate read on how well the breathing was keeping her oxygenated. That might give you a little better idea/feeling as well. Keep the trilogy handy because when the elephants come, he will want it. The need to breathe will overcome the part of him not wanting to ...

tc
 
"I only see signs of breathing issues after he comes back from the bathroom or takes his shower. We both agree that he has a fear of the breathing part of ALS so might not be as bad as he thinks he is. We also think he could start using it some during the day."

These activities, particularly the shower always leave me short of breath.
 
Thanks everyone. The advice and support I get here means the world to me. I know he uses his energy walking back and forth to the bathroom. He startes that they only reason he thinks he is still walking is because he refuses to use the chair right now.

I also know that any lull we had in progression is over. I can tell he is getting weaker by the day and he certainly looks it.

Thec walk is tomorrow. I hope he can make it. This f disease needs wiped out. My family is here and all agree that the changes the past two months are very noticeable.

You all keep me on the ledge instead of over it. I am very fortunate to have found you all.
 
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