Bipap and progression

[Hewitt]

I'm curious - does the need for BiPAP indicate progression? My sister is down to less than a hundred pounds now, and her husband told me that she is now on BiPAP at night. Does the fact that she only needs it at night suggest that she might just have sleep apnea? She also recently had a skull fracture from a fall. She keeps telling me that the doctors are estimating that she has two years to live, but it does seem as if she is declining more rapidly than before.

 

[Vincent]

A bipap machine is recommended when a PALS breathing muscles have weakened to 50% of expected capacity. So yes, it does indicate progression. PALS do not get obstrucitve sleep apnea, This is why a bipap and not a cpap is used. They are two completely different conditions. Another thing a lot of PALS do when the breathing goes below 50% is to look into getting a PEG feeding tube. As breathing decreases, the risks associated with having surgery increase dramaticly. Just something to think about

 

[lgelb]

The way it works is most people start BiPAP at night only (muscles struggle more when the rest of the body is more shut down, and when the person is lying down, which creates more airway resistance) and progress to during the day as the respiratory muscles and others weaken.

Nutrition/hydration at that weight are far more likely to be the limiting factor at this stage (when someone is malnourished, muscles will deterioriate faster) and as I recall she does not have a feeding tube, so that two years doesn't seem very real, I'm sorry to say.

 

[patoyeah]

a feeding tube is usually a great help with extending a pals life, and quality of life for everybody involved.

Take care,

Pat

 

[lgelb]

Let's make that "often" instead of "usually," Pat. This disease takes a few different forms.

That said, I am fairly certain that Hewitt has encouraged his sister to seek a tube. To date, she has not.

 

[patoyeah]

Yeah, i mean O'yeah. What she said, often.

Evening,

Pat

 

[patoyeah]

Hewitt, i am sorry for what you and your family are going through... as the progression continues, hopefully hospice or somebody can help your family.

Take care,

Pat

 

[patoyeah]

Hospice from what i understand can help. It does not have to mean a definite ending. We will probably employ Hospice soon, just to get my wife some help. we do not know how else to get help through Medicare

 

[gooseberry]

Many insurers offer an extended hospice benefit. If you are diagnosed with a terminal illness, the benefit kicks in.

Using bipap as much as needed or tolerated will only help. It relieves some anxiety but it does make communication more of a challenge. Try looking at text to speech apps and the like for the times on the bipap during the day.

 

[Hewitt]

Thanks, Pat! Hospice has come out to talk to my sister and her husband, but I don't think they have actually begun to receive services (I think my brother-in-law wants to wait a while). My sister's ALS clinic has sent out a physical therapist who seems to be coordinating services, though, and she has arranged for them to have a caregiver for two days a week, and I think that will be a big help. I feel enormous sympathy for her husband and family, because she can't be left alone for a minute, and that is a huge burden, but I think it is inevitable that she is going to require more supervision, because it seems that a minute's inattention can lead her to get up and walk and then fall (as she did two weeks ago when she fracture her skull). Her husband is determined to redouble his attempts to be with her all the time, which is admirable, but it doesn't seem to be practical, because there will inevitably be times when he has to leave the room. Having cared for my mother, who had Alzheimer's, I know what a quandary this poses, because Hospice can't provide full-time care. I at least had a home healthcare aide with her during the day x7, so I could do errands and have some time to myself during the daytime, and eventually we had round-the-clock care to make sure she was never unattended. I wish they could have this level of care, too, but it doesn't seem possible at the moment.

 

[Hewitt]

I read someone else's post about text-to-speech apps the other day, and I found one online that I recommended to my sister. She doesn't have a smartphone, but she can type on her computer and convert it to speech. I think this will be wonderful if she is able to type for any length of time, because when I talked to her the other day her speech became garbled after just a few minutes as she tired. With this site, she will be able to communicate clearly for much longer. It was so dear, though, that when her husband took the phone and continued to talk to me, I could hear her in the background mumbling and vocalizing, still contributing to the conversation as best she could. I hope this will help, and the suggestion was invaluable. I also recommended that they look into the VAlert device to help with fall detection, although this will require that they get a smartphone.

 

[gooseberry]

There are several options for a device to be worn and a button calls for outside help. Life alert is one. No cell needed but ambulance is called if person cant respond. We got a waterproof call button thru our security system provider. Steve wore that at all times.

 

[affected]

Maybe you could go and give some help to your brother for a while since it is such a burden for him? Relieve him of having to the one always in the room to watch over his PALS?

I'm afraid his wife is not likely to be around for years to come, and may not be mobile at all for much longer. You would never regret giving that gift to them both while the opportunity is there.

 

[Hewitt]

You're quite right, Tillie, and I do plan to visit her in the next few weeks. Unfortunately, I am the legal guardian of another sister who is developmentally disabled and medically fragile, so I can never be away from home for very long. My sister with ALS is the sister to whom I am most close, so it's distressing to be unable to be there for her as much as I would like, but that is why I am trying to do as much as I can from a distance.