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Old 06-07-2016, 08:50 PM #4 (permalink)
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Join Date: 2014
City: Northern
State: NJ
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Interest: I lost a loved one to ALS/MND.
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starente15 starente15 is offline
Senior Member
starente15's Avatar
Join Date: 2014
City: Northern
State: NJ
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 764
starente15 has a spectacular aura aboutstarente15 has a spectacular aura about
Default Re: Breathing Anxiety

Hi JR. I'm sorry you're facing these difficult decisions. My dad also had bulbar. Even though he tried not to show it, I know he struggled a lot with anxiety. He didn't want to be "dependent" on the bipap so he went without it during the day longer than he could comfortably tolerate. He was also resistant to meds.

I tried to help him by using relaxation techniques. When he would get anxious, I would get him to slow his breathing by counting back from ten, put on headphones and listen to music.

As things progressed, we got palliative care to come in to see what comfort measures they could provide. Hospice came in when my dad was still walking and getting around. They didn't require him to be housebound to receive care so he was still going to the store and out to eat.

Hospice will be able to provide morphine, which in small doses, will ease the air hunger without knocking you out. My father was able to take a small dose for quite awhile before needing to have it increased and it eased the anxiety considerably.

I hope some of this helps.
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