Status
Not open for further replies.

Kari M

New member
Joined
Oct 16, 2008
Messages
6
Reason
Loved one DX
Country
US
State
Missouri
City
St. Charles
My dad was having difficulty breathing at night...the dr. gave him nasonex which seems to have helped with the stuffyness and mucus. He is also taking antianxiety meds. The dr. thinks he could really benefit from a bipap, but needs to do the sleep study first. My dad doesn't feel that he needs one yet so he is not wanting to do the test at this point. I think he fears being away from my mom during the test. He is very dependant upon her, he fears something will happen to him when she isn't with him 24/7 and often experiences panic attacks if she needs to leave the house for short periods of time. They (my mom and dad) have decided that when the time comes dad doesn't want a feeding tube or to be put on a vent. I respect their decisions, but want his quality to be as good as it can be for the time he has left. The disease is progressing VERY quickly. In your experiences is it better to do the study sooner rather than later?

Thanks,
KM
 
Yes it is best to have the study early. I needed help dressing the last 2 studies and my wife came with me to the study and slept in the room next to me. This may be an option for your dad.

AL.
 
Km... The last sleep study Rick had, I was able to stay with him. I was there while they hooked him up to all the gadgets and then I was given a bed in the room next door.... no charge. In the morning a knock came on my door that told me he was awake, and we both heard together all the comments the technician made.

Yes, a sleep study is VERY important because if he isn't breathing well during the night, it affects his entire life. Quality and quantity of sleep fuels us.
 
KM,

Interesting, as though is seems many on this forum have undergone sleep studies for a bi-pap, my fathers neuro prescribed him a bi-pap with out a sleep study. He had all of his pulmonary capacity tests done, and informed the neuro that he could not sleep laying flat, and one was prescribed. We didnt even know what it was.

An individual from a medical supply company came and hooked it up for him, showed him how to use it, and adjusted it for him. He returned regularly to check the machine and adjust the settings.

Maybe you can see if you can get a bi-pap without putting your father through the sleep study. I can see no reason why he needs to be stressed any more than he already is. Ths bi-pap will give him more energy during the day, even if he only uses it at night. Discuss this with your neuro.:wink:
 
KM,

Interesting, as though is seems many on this forum have undergone sleep studies for a bi-pap, my fathers neuro prescribed him a bi-pap with out a sleep study. He had all of his pulmonary capacity tests done, and informed the neuro that he could not sleep laying flat, and one was prescribed. We didnt even know what it was.

An individual from a medical supply company came and hooked it up for him, showed him how to use it, and adjusted it for him. He returned regularly to check the machine and adjust the settings.

Maybe you can see if you can get a bi-pap without putting your father through the sleep study. I can see no reason why he needs to be stressed any more than he already is. Ths bi-pap will give him more energy during the day, even if he only uses it at night. Discuss this with your neuro.:wink:

Thats right....
 
Keri ... I've been going round and round with the insurance on this. According to my ALSA rep ... AND my insurance case manager ... if you have ALS, you are automatically qualified for a bipap. Maybe that is just California, or Blue Shield.

I think the sooner the better. Both for his physical health and psychologically. Get it now and get it over with. I suspect most people have an adjustment period getting used to sleeping with it, and if your dad can ease into it when it's not so critical, it may make the adjustment easier. If he waits until his breathing is further compromised, that will put more pressure on him.

I bet the facility would let your mom stay with him, or in a nearby room, during the study, as other members have suggested.

Good luck to you and your parents.
 
bipap

Dear all,

My husband "only" has had his FVC's tested at each ALS clinic at Unn Penn and when he started to decline in numbers, they ordered a bipap and the respitory therapist came out to the house and that was it. I guess my husbands diaphram was an issue early on and now his FVC's are stable at around 20.

Don't understand the need at this point for a pulmonary visit but didn't question it back a year ago when bipap was prescribed.

The bipap is now his very best friend that meets all his breathing needs and for that I am so thankful! Cannot imagine before bipap how the ALS patients suffered.
My husband can be off the bipap once weekly for church. Then home to the bipap. I actually was given a loaner backup bipap for the car, plugs into cigarette lighter.

Good luck with your Dad on the bipap. If he can relax and get use to it, it really helps.

Patty
 
Re : the sleep clinics... the facility should have a room where they can both stay together. For my last study, I just happened to be a room with an extra day bed in it. I asked about it and they said they have it for families. Sometimes because the study either involves a small child, or families that will be able to complete the testing better if they are together. It shouldn't be a problem, just ask in advance. Your dad's quality of life will improve greatly when he has the bipap. good luck to all of you. :)
 
Hi Kari,

A few years ago I went through a sleep study for sleep apnea and ended up with a CPAP. My wife was diagnosed with ALS and when we went to the clinic on Jan. 8, the RT did some testing and determined that she needed a biPAP. She came to our house and set up the machine. No sleep study or further testing. I asked about a sleep study and the RT said that this situation was very different from my experience with sleep apnea. She said a sleep study was not needed since the problem is not related to just sleep problems but rather with breathing problems. By the way, my wife loves the biPap and says she sleeps much better and wakes up feeling much more rested.

God bless you and your father,

Dennis
 
Dennis, what testings did the RT did for your wife? I had been asking if tests need to be done for my mum, but my questions are not answered thus far. I thought if I have the specific names, the docs might understand me better. Thanks.
 
Status
Not open for further replies.
Back
Top
< >