Anxiety and breathing machine
- Status
joelc
Moderator emeritus
- Joined
- Jul 15, 2006
- Messages
- 2,835
- Reason
- PALS
- Diagnosis
- 09/2005
- Country
- CA
- State
- BC
- City
- Abbotsford
Welcome to our forum, sorry you have a reason to be here. If you click on my name and go to my blogs there is one that talks about my experience getting used to the bipap. It might help.
Ratman55
Distinguished member
- Joined
- Nov 27, 2009
- Messages
- 145
- Diagnosis
- 11/2009
- Country
- US
- State
- Ohio
- City
- Wooster
Hello Nannette:
Anytime I Am Faced with Something New I go to Joel's webpage. But let me add this, I consider bi-pap To Be My Best treatment so far for ALS. My wife and I joke that it is my "fix". It gives me energy during an afternoon nap, and when I wake up in the morning(following bi-pap) I feel hungry, rested and strong despite the progression in my arms and legs and chest. The proper mask is crucial, and I found a nasal one to be the least restrictive. That being said, if your brother is having trouble make sure the mask is fitted properly, that the device ramps up slowly and that he is tired when he goes to bed. Also if his head is propped up on the right type of pillows and he is very comfortable it will be easier to get used to it. Encourage him not to give up as it is a little scary at first. If all that fails, consider going back to the therapist or pulmonologist for help. Sometimes it takes a while to get used to, and there are several varieties of masks as well. Let us know how works out, there is a lot of help here for you.
Good luck.--JK
Anytime I Am Faced with Something New I go to Joel's webpage. But let me add this, I consider bi-pap To Be My Best treatment so far for ALS. My wife and I joke that it is my "fix". It gives me energy during an afternoon nap, and when I wake up in the morning(following bi-pap) I feel hungry, rested and strong despite the progression in my arms and legs and chest. The proper mask is crucial, and I found a nasal one to be the least restrictive. That being said, if your brother is having trouble make sure the mask is fitted properly, that the device ramps up slowly and that he is tired when he goes to bed. Also if his head is propped up on the right type of pillows and he is very comfortable it will be easier to get used to it. Encourage him not to give up as it is a little scary at first. If all that fails, consider going back to the therapist or pulmonologist for help. Sometimes it takes a while to get used to, and there are several varieties of masks as well. Let us know how works out, there is a lot of help here for you.
Good luck.--JK
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Blubear
Senior member
- Joined
- Oct 24, 2009
- Messages
- 941
- Reason
- Lost a loved one
- Diagnosis
- 09/2009
- Country
- US
- State
- Wa.
- City
- Puyallup
I have to say that my dad is horribly claustrophobic as well, but just like Rat (Jay) he now also considers it his best friend. It just takes time, the advice above it great, tell your brother to hang in there! Oh yes, Welcome to our forum! We are all here to vent with or try to answer questions. So sorry about your brothers diagnosis hun.
Hugs, Blu
Hugs, Blu
Nannette
New member
- Joined
- Jun 6, 2009
- Messages
- 4
- Reason
- Loved one DX
- Country
- US
- State
- PA
- City
- Devon
Thanks for your good thoughts. My nephew says, "We've tried several masks with Dad, and he is currently on the dual-nostril unit. *He quickly wants it taken off, even though he used to like it quite a bit and would remain on the system for hours at a time comfortably. *He really can't communicate well at this point with anything other than basic noises (though some words are possible) so I'm not sure if it's worth experimentation with him when he is so easily upset - he doesn't seem to want adjustments, he just wants it off. *The respiratory care person that comes out every two weeks has said this is the configuration that is most often used with ALS patients, but at some point it just starts to not work for the patient. *I think we're at that point."
Blubear
Senior member
- Joined
- Oct 24, 2009
- Messages
- 941
- Reason
- Lost a loved one
- Diagnosis
- 09/2009
- Country
- US
- State
- Wa.
- City
- Puyallup
Hi Nannette, Do you think your brother is of sound mind? There are some patients with ALS that do get a form of dementia. If he was comfortable before with the bi-pap system and now isnt, it could be either confusion, or perhaps he has just given up? He could always get the Trach/Vent done to get his breathing back to normal levels, and that would solve the anxiety problem, if that is what it really is. Does he have any other way to communicate with you?
Hugs, Blu
Hugs, Blu
Altair
Member
- Joined
- Nov 21, 2007
- Messages
- 20
- Reason
- CALS
- Diagnosis
- 12/2006
- Country
- US
- State
- ca
- City
- rancho palos verdes
Hi Nannette,
My wife was apprehensive at first. She used it for a few hours during the day while in her wheel chair. Fast forward 18 months and she now uses it 24/7. She can only go a few minutes without the nose mask. she preferred the nose mask as it was less claustrophobic. At this stage of her disease, this has been her best decision. It truly is a life-extender!
God bless you and your husband.
Altair
My wife was apprehensive at first. She used it for a few hours during the day while in her wheel chair. Fast forward 18 months and she now uses it 24/7. She can only go a few minutes without the nose mask. she preferred the nose mask as it was less claustrophobic. At this stage of her disease, this has been her best decision. It truly is a life-extender!
God bless you and your husband.
Altair
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