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heatherlev

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Apr 22, 2005
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Hi all, and happy holidays.

My 35 year old brother lives in Michigan (USA) with my parents (ages 68 and 64). He can still eat, talk, and breathe, but uses a Bipap at night and uses a wheelchair, and needs assistance with many activities. His oxygen level was recently tested and was at 88% during the day. The doctor said he needs to use the Bipap "more" during the day (don't think he specified exactly how much more).

I have a lot of questions and was wondering if anyone has experience or thoughts:

1. What does it mean that oxygen level is 88%? At what level does it become dangerous? How often should this be monitored (is once a month enough)? Should the oxygen level be monitored at home? Can or should we get an oxymeter?
2. Specifically how many hours during the day should my brother wear the Bipap? Should the Bipap be brought from room to room with him?
3. What do we do if my brother gets a cold, so the Bipap still works?
4. Are there exercises my brother should learn to help improve his breathing? Like “frog breathing”
5. Can/should my brother get the pneumovax vaccine?
6. What emergency or first aid techniques should Mom & Dad be trained in, in case of a respiratory emergency, swallowing problem, etc.?
7. Is the Bipap enough, or at what point do we have to consider the trach?
8. If my brother decides to use a trach, and wants to stay at home, what resources are needed and available? How many hours per day of nursing care is needed? How many hours of home health assistance? Does he need 24 hour nursing care, or can he just have some nursing and some home health assistance? How many hours of what kind of care is covered by insurance, and what comes out of pocket? What equipment is needed? What would mom & dad have to know or be responsible for, for instance if the equipment broke or there was a power outage?
10. If it is too difficult or expensive for my brother to stay at home, then where would he live? What services would be provided wherever he goes to? What facilities are available?
 

Al

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Joined
May 25, 2004
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PALS
Diagnosis
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Country
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State
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City
NW of Toronto
Being in the US is quite different than here in Canada as far as the levels of care are concerned. Has he contacted your local ALS Clinic? They have pulmonologists on staff that could answer your questions. We are all different as far as the disease goes. I use the Bipap at night to help me breathe. I can not breathe on my own in any position other than sitting straight or standing. If I want to lie down to watch TV I have to put the machine on. It's not so much the oxygen level but just getting enough air into my lungs. If the oxygen level is too low the carbon dioxide builds up and your brain doesn't tell your lungs to breathe. Then you are in serious trouble. My doctors told me to get the flu shot as well as the pneumonia shot. If he gets a cold he should get to a doctor right away. Pneumonia sets in quite quickly with ALS patients. Does his Bipap mask cover just his nose or his nose and mouth? Mine covers both so even if I'm stuffed up I can still breathe through my mouth. Sorry I couldn't give you all the answers you are looking for but someone else will probably jump in and give information that is relative to Michigan. Take care. Al.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
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State
On
City
NW of Toronto
Hi again Heatherlev. I just found this site in my bookmarks. It will answer some of your questions.
http://tpals.org/
Good Luck and Happy New Year. Al.
 

Jane

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Feb 7, 2004
Messages
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Reason
Lost a loved one
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ON
City
St Catharines
New Year Wishes

Wish each of you the best possible New Year. Thank you for all the info, kindness, and humor found in the room.
I pray that a cure/treatment will be found for ALS in the coming year.

HAPPY NEW YEAR!

Jane
 
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