Newly diagnosed -- limited hand coordination

Hi, I am new to this forum. I started reading a few days ago, anticipating that I would get a sleep apnea diagnosis, and I did. It's all a bit surprising as the only reason I even did the sleep study in the first place was because I am taking modafinil off label for depression and my insurance wouldn't cover it. I was told that if I had a sleep apnea diagnosis, they might pay. However, as I started reading about sleep apnea, and talking to my dad who has it, I realized I probably had it. And it turns out I do.

I was told I'm having five apnea events per hour. I don't know if that is severe, but my dad says he has many more without treatment. I go for another study on November 7 where they will figure out my pressure, and I'm not sure what else. I'm hoping you all can fill me in about that experience.

Now here is my challenge. I have a disability, cerebral palsy. I use a wheelchair and have limited use of my hands. However, I am able to get myself into bed at night. My concern is how I am going to be able to put on a CPAP mask. I'm pretty sure I'll have to put it on before rolling into bed. Also, I think I will need a machine that's very small and easy to turn on and off, that can sit next to my pillow so I can reach it to turn it on once I'm in bed. I travel often so that's a factor as well. I'm hoping you all can help me with the following questions:

Is there anyone else here with limited hand use or coordination who manages to put on a CPAP mask? If so, which one do you use? I already explained to the woman who called me that my decisions about mask will be primarily based on whether I can put it on myself. She didn't seem overly thrilled about that, but I need to have some information in my corner so I can advocate for myself when I get to that point.

Also, which machine would be good for me? I found a very small one called Z1 that looks great, but having not used any CPAP before I have no idea what makes one good or bad. My dad said his is very large, the size of a toaster. That is not going to work for me for travel! I already have enough extra junk to bring along with my wheelchair battery charger etc. Again, I would like to figure this out before hand so I can advocate in terms of insurance etc.

Any information would be great. Thanks!

Ayesha wrote:Is there anyone else here with limited hand use or coordination who manages to put on a CPAP mask? If so, which one do you use? I already explained to the woman who called me that my decisions about mask will be primarily based on whether I can put it on myself. She didn't seem overly thrilled about that, but I need to have some information in my corner so I can advocate for myself when I get to that point.

Also, which machine would be good for me? I found a very small one called Z1 that looks great, but having not used any CPAP before I have no idea what makes one good or bad. My dad said his is very large, the size of a toaster. That is not going to work for me for travel! I already have enough extra junk to bring along with my wheelchair battery charger etc. Again, I would like to figure this out before hand so I can advocate in terms of insurance etc.

first, there are a lot of masks out there, a couple don't even have straps, and a few have a very simple strap arrangement. part of it will depend on whether you're able to breath just through your nose without air leaking out your mouth, if so, there are more options.

second, resmed machines, while not tiny (or loud) like travel machines, are really good at turning on automatically when you put the mask on and start to breath through it, and shut off quite quickly when you remove them.

yes, they're larger than the tiny 'travel' ones, but more reliable, and generally work much better. may even be less expensive.

I'm hoping I can use a nose one but I think I breathe through my mouth a lot, so we'll see.

There are two major brands of CPAP machines that are likely to be suitable for you - ResMed and Respironics. The ResMed and the Respironics are about 2X the size of the Z1 but are not that difficult to travel with. They both have the auto-on function so that just getting the mask in place and beginning to breathe through the mask will turn them on. For most models of the Respironics line, there is also an auto-off function as well. The current models of the ResMed also have the auto-on and auto-off feature. These mean the putting on the mask and breathing will start the machine and taking the mask off will, after a short time, stop them.

The one issue that may come up is the use of the built-in humidifier for any machine. These have internal, removable chambers that need to be removed and re-filled with water every day. Depending on the severity of your condition this may prove to be a challenge. If you live with your dad, he can easily take care of this one issue.

Some masks can be adjusted to fit and then are able to be removed without disconnecting the head gear which holds the mask in place. It may also be possible that they can be put back on by slipping the headgear over the top of your head and then just pulling the mask down and positioning it. That is something you will have to practice at the suppliers so you can be sure you can do it when you are home alone. I believe that nasal prong / pillow masks are likely to be the easiest to use in this manner with the over-the-nose nasal mask next. If you are able to eat without assistance, then putting on a CPAP mask should be within you capabilities and not present any serious problem.

If you are a mouth breather at night, then a full face mask (FFM) will be the one required. Some of them can be put on in the same manner. In addition to the FFM, you should also get a soft cervical collar to wear at night. This will support your jaw and prevent it from dropping down as your muscles relax with sleep. This jaw movement tugs at the mask, moving it out of position and can cause leaks.

Five events per hour is enough to qualify for insurance reimbursement but is considered mild sleep apnea. Even so, getting and using a CPAP machine will improve your sleep quality.

You should ask for a copy of both of your sleep studies as they will contain very useful information about the details of you sleep apnea. You should also ask you doctor for a copy of the prescription for your machine. It is easiest if they can include in the prescription the words "full data recording" to help avoid what we call bricks.

Finally, you should insist on getting what is referred to as a full data machine. That means that the machine records all of the events that occur during treatment at night as will as the information about each breath you take. Sometimes providers will try to give you a machine that only records hours of use - and that is not nearly enough information to be able to see if your treatment is optimal. Before accepting a machine, get the model number and post it here and someone will be able to tell you if it has the data recording capability needed.

I hope all goes well with your next sleep study (pressure titration study) so you can get started with your treatment and that it means that insurance will start picking up some of the meds costs.

JDS74 wrote:There are two major brands of CPAP machines that are likely to be suitable for you - ResMed and Respironics. The ResMed and the Respironics are about 2X the size of the Z1 but are not that difficult to travel with. They both have the auto-on function so that just getting the mask in place and beginning to breathe through the mask will turn them on. For most models of the Respironics line, there is also an auto-off function as well. The current models of the ResMed also have the auto-on and auto-off feature. These mean the putting on the mask and breathing will start the machine and taking the mask off will, after a short time, stop them.

two things of note, the current resmed line considerably smaller than the respironics, and many times more sensitive for auto start/auto stop (always has been).

Try setting up the machine and putting on the mask as the sleep lab. If you can do it in the sleep lab, you can do it at home.

You can put on the mask and then lie down or lie down and then put on the mask, it doesn't matter. It's generally recommended to put on the mask first so you don't forget, but if there's a disability issue that takes precedence.

Also, since you seem to be able to travel, I gather you're not super disabled.

You are outrageous! How can you possibly presume to have any idea of what her level of disability is! How dare you tell her what she can and cannot do! I think you should be banned from this forum forever!

D.H. wrote:Try setting up the machine and putting on the mask as the sleep lab. If you can do it in the sleep lab, you can do it at home.

You can put on the mask and then lie down or lie down and then put on the mask, it doesn't matter. It's generally recommended to put on the mask first so you don't forget, but if there's a disability issue that takes precedence.

Also, since you seem to be able to travel, I gather you're not super disabled.

Fuck off DH.
You have no right to question her "Level of Disability" None NADA! So just shut the fuck up!

D.H. wrote:Try setting up the machine and putting on the mask as the sleep lab. If you can do it in the sleep lab, you can do it at home.

You can put on the mask and then lie down or lie down and then put on the mask, it doesn't matter. It's generally recommended to put on the mask first so you don't forget, but if there's a disability issue that takes precedence.

Also, since you seem to be able to travel, I gather you're not super disabled.

just when you think, "he can't possibly post anything any more moronic than he already has"... he excels.

does one get a cape if one is super disabled?

Stephen Hawking travels, we've all seen video of him... guess he's not "super disabled"... someone should ring him up and let him know that DunderHead has spoken.

Hi- when traveling, my Resmed Airsense 10 (one of the most recommended on here) fits into it's original case. The packed case weighs about 5 lbs, is 5" X 13" X 12". The case is travel friendly in that it has a back strap the fits over a rolling luggage suitcase handle. Also, the TSA considers it medical necessity. It does not count against your carry on allotment and can not be separated from you on the plane.. The pieces are a long hose, a mask and it's short hose, the blower and water tank, and the power cord and power brick. They all pack separately into compartments in the case.
I travel frequently, and the TSA and airlines are very familiar with cpaps. I think they recogonize the cases and I just breeze thru security with it.

One thing, I don't know if this would be easier for you. The Resmed has an electrical cord that disconnects from the machine, is 2 parts, and has a heavy power brick.
There is a machine called Devilbiss Intellipap that has a normal cord without the power brick . If you travel a lot, I've always wondered if it would be easier to have no power brick to haul around.

Thanks so much for the helpful replies! Other than the rude person who clearly has no understanding of disability. I have a very significant disability, and I also travel -- in fact I'm a travel blogger. That's why the size of the CPAP machine is very critical to me. Everything you are describing sounds large, especially considering everything else I already have to drag along with me, such as my wheelchair battery charger, sleeping wedge for my acid reflux, etc. The one I found a video of is really tiny: are there any disadvantages to a machine like this?
http://hdmusa.com/products/z1-cpap/

On a related note -- can a home sleep study distinguish between breathing problems due to acid reflux and sleep apnea? Or does the cause even matter? I have very severe acid reflux, and even though I take a daily prescription, it still rears its ugly head sometimes.

I noticed someone mention that my apnea is considered mild. Does that mean I could try Theravent or Provent instead of CPAP? Obviously I would love to avoid it if possible.

Hi - Acid reflux doesn't cause any breathing problems that I'm aware of, though it does accompany OSA in many people and interferes with sleep, but sleep studies of any kind would not recognize reflux or any symptoms not related to your respiratory or neurological system. You should try and address the reflux on its own so that it doesn't wake you overnight.

Here are Power Shell reviews on Cpap.com -

https://www.cpap.com/productpage/z1-pow ... eviews-tab

However, the PS is essentially a battery powered machine that is good only for one night, and would need recharging, but you would still have to deal with a hose and mask, so I'm not sure how it would help you apart from its size.

No, it can be plugged in -- the battery pack is a separate purchase, and I wouldn't need it as I don't camp without electricity.

I used to frequently wake up choking due to acid reflux. Now with a daily prescription, plus sleeping with my upper body elevated, it generally only happens once or twice a month.

Ayesha wrote:I noticed someone mention that my apnea is considered mild. Does that mean I could try Theravent or Provent instead of CPAP? Obviously I would love to avoid it if possible.

That was me, Ayesha. The comment mild refers the classification label of severity of the apnea. With your other issues, its not likely that you won't need a cpap machine. That is something to talk about with your doctor.

In reviewing the literature for the Z1 device, it appears that it doesn't have the capability of using a humidifier and the data reporting is somewhat limited. The system seems to report only the total apnea events without a breakdown of the type of event. The sample reports show events and a pressure profile but not breathing wave data. Reporting seems to be only for IOS and Android devices. This is better than devices (bricks) that only report hours of usage but not a good as those that report full data.

For some folks, the lack of humidification is not a problem but for most it is. If you are a mouth breather, then this lack is important.

Please keep posting all of your questions and people here will try to help you on this journey.