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LinCan

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Hi. I know this has been dealt with in the past, but have some concerns. Have started to feel short of great at times - no morning headaches yet. Breathing last tested about8months ago. I'm in a community without a neuro, nearest ALS specialist 7 hours away, but they can test pulmonary function here. Would it be best to start with bi-pap or trilogy non-invasive vent? I think I need to start advocating, as not all doctors too knowledgable re: ALS.

Thanks for the help,
Linda
 

dalvin

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The trilogy is a bipap that can be used both invasive and non invasively. I have one being used noninvasively now
 

alsornot

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hello there....still being diagnosed but at the beginning of all my symptoms 14 months ago....they discovered i had severe sleep apnea, morning headaches and lack of oxygen and was put on a CPAP. head issues cleared up but did not help with muscle weakness...now i am using a walker outside of my home all the time...
i have had breathing issues since the beginning...on any activity i am breathless...now that my choking and coughing are at its worst i often can't get air in and only hope is that it happens when i am not alone...my respiratory tests were ok , MY QUESTION is : can ALS breathing issues come from the dysphagia problems because my lungs function is good, however i have had aspiration of liquids into the lungs also?
 

lgelb

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1) Anyone w/ ALS that needs respiratory support should be on BiPAP, not CPAP, to have choices as to level of expiratory relief (aka pressure support, the difference between the pressure when you breathe in vs. out) -- max difference on a CPAP is 3 cm and may be less -- if you are on CPAP w/ inadequate PS, you are working your breathing muscles harder than needed. That said, the idea that the more PS, the better works for some pts but not for others, where too deep a breath can be too much work as well. So you need to refine settings as breathing difficulty progresses.
2) yes, dysphagia can be separate from lung function and if you can't swallow well, liquids are more likely to get into the lungs or feel like they are
3) Trilogy is basically big BiPAP w/ AVAPS function & battery. If you don't need a portable machine at first, is overkill size (12 lb, I believe) for home and alarms may be annoying. Even when you need a portable, it may or may not be the best choice depending on what features you need. For people who plan to move to invasive ventilation when needed (trach), getting a Trilogy early may be desirable since it can be used invasively, depending on the speed of progression.
For coughing and choking, also may want to look into suction machine, Cough Assist, Hill-Rom Vest, Acapella device (the blue one). Also, know I sound like a broken record, but always check the humidification level to see if tweaking can help.
 

Janie H

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I couldn't live without my trilogy, I now have vest, cough assist also, can still get around but get out of breath easily.
 

Clearwater AL

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alsornot... this Forum is specifically for those who have a confirmed diagnosis of ALS. You should post YOUR questions in another Forum topic.
 

LinCan

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Thanks , Igelb, for that excellent response. I really am having a variety of issues now with mobility, being inside for 6 months (no lift), and very little medical help. I'm scheduled to go to a nursing home soon, so am struggling with anxiety and depression as well. Just trying to keep my head above water.... Hope others are having better luck. I really am thankful for this forum.

Linda
 

Janie H

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Keep your computer with you and stay in touch, I go for weeks without leaving home, this forum helps a lot, God Bless.
 

MaxEidswick

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Hi, Linda --

> ... am struggling with anxiety and depression as well. Just trying to keep my head above water....

We can relate; if you are in a place where you can find additional support like for example the ALS clinic, Association, or clergy now would be a good time.



>I really am thankful for this forum

Me too, it is a place to share some of the more difficult aspects of what we have to deal with.

Kind regards,

Max
 

LinCan

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Thanks, Jane and Max. Caring folks like you make the journey a bit easier, knowing that someone understands. I hope you are both doing as well as possible, with some great moments.

Linda
 

zoohouse

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My husband has both a BiPap and a Trilogy, but I understand that not all people can afford that. If you have good facial strength and could only afford one then I would say the Trilogy. Both have battery packs although the Trilogy has one internal and one external, and the Bipap's is attachable for when necessary. Both have attachable humidifiers, but we only have the humidifier on the BiPap which is kept by the bed. The alarms on the Trilogy are completely programable, and can be turned off completely, except if the hose comes detached which I would never want turned off. The trilogy also can come with a portable stand that is quite manageable.
So, since my husband is primarily LMN he still has good speech and facial strength, but is down to less than 37% pulmonary function. He uses his humidified BiPap with full face mask at night, and then when he is up is switched to his Trilogy 100 which was designed not to alarm as much with a Sip & Puff hose. When he needs a breath he takes the goose necked hose into his mouth and it delivers the programmed amount of air to him. This only works because he can make a seal on the mouth piece. The Trilogy stays on the back of his wheelchair, and does not have a humidifier on it at this point. I have it programmed to alarm if he goes longer than 3min. between breaths, that way if he falls asleep I will know as he only breathes about 3-4 breaths a min. If he wants to sleep while in his wheelchair I with his Trilogy to BiPap setting, and put either his nasal pillows or face mask on. Because his chair is never far from him the Trilogy isn't either, and he can use it while on the toilet, or in shower chair. I realize this is a long explanation but maybe will give you an idea about either one.
Many people have sleep apnea that don't have ALS, the majority in fact. But I find it interesting that there does seem to be an extremely high proportion or PALS who have sleep apnea.
Paulette
 

LinCan

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Thanks for the helpful info. I have primarily UMN symptoms, but my torso seems to be progressively weaker, not my facial muscles as yet. I have had a degree of sleep apnea for some years.

Linda
 

lgelb

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Paulette makes a good point -- the Trilogy's weight is immaterial if you are always in/near your chair and/or have room for a portable stand. In our case, neither is true. But as far as "good facial strength" for a sip/puff, someone may have that today and not have it tomorrow. So you want a machine that accommodates nasal and full face masks at a minimum.
 

zoohouse

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That is the beauty of the Trilogy as it has several modes, and my secondary mode is BiPap, and I just pull off the mouth piece and put on either his face mask or nasal pillows.
 

lgelb

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For those w/ "regular BiPAP" who want to try sip 'n' puff, the reverse works: get a 19mm mouthpiece for a couple of bucks and attach it to the end of your BiPAP hose instead of a mask. You will need to turn off alarms if you have them enabled, and not have a backup rate set.
 
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