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JMH

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Just got back from spending 4 weeks with Dad. He's really having difficulty talking now so I am thinking it's time to start alternative ways of communicating.
His doctor has prescribed oxygen for dad. He has had a couple of chest infections and was diagnosed with COPD a couple of years ago. Can someone tell me what the difference is between having a BiPap (as I've seen in the forum so often) and using oxygen? Many things are so new - it might be a dumb question but....
Also, at times I wonder if Dad's mind is affected by the ALS or whether his absentmindedness is just age related. I know ill health and stress affects the way a person makes decisions. I just wanted some input from others with more experience. Sometimes he doesn't remember talking about a subject from the day before. It scares me because I am looking after his affairs and want to honor his wishes but I don't want to jump the gun on issues that are important to him. I worry because he will decide something one day and when I double check the next he changes his mind. Any advice?
JMH
 

Al

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Hi JMH. Sorry your dad is doing worse. Having COPD usually leads to a need for O2 supplement either an O2 generator attached to tubing or portable bottles. A Bipap is used if the lungs and chest muscles are too weak to work on their own. It just pumps ordinary room air into the lungs. Having COPD and muscle problems may require a Bipap with O2 being pumped in as well.
As for the forgetfulness my dad is 92 and healthy but he does that too. Do you have his power of attorney? That could enter into play at any time. I think you mentioned that he is 77? By that time a lot of seniors are starting to lose some short term memory. It is hard to judge whether it is age related or ALS related.
AL.
 

JMH

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Thanks Al. Was pretty sure the 02 was okay for Dad. The BiPap I'm not familiar with and assumed the doctor would know, although he does tend to give me whatever I think might be good for Dad which is scary. I have to be careful, read up on everything, and have come to depend on this forum for info. Once I asked the Dr. for something for pain for Dad he gave him Oxycontin, which is a narcotic and turned him into a zombie. We're back to Advil which seems to help Dad and has no side effects.
I wonder if I could PM you to ask your advice on something I've ran into as Dad's P.O.A.?
It's in regard to a touchy subject and I could use some outside advice.
No problem if you don't want to be a sounding board on this.
Thanks again.
JMH
 

Al

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Sure go ahead. I'll try to help if I can. Also just because the doc says O2 is ok , is he familiar with O2 use in ALS patients. There is quite a difference. AL.
 

dana

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One of my dad's doctors perscribed him oxygen because dad was having a hard time breathing. (This was before he received a vent). It wasn't the oxygen that dad needed. He needed to be able to get rid of the carbon dioxide that was building up. WHat he really needed was a bipap, but that was not looked into by the doctors. Instead, it became too late, and dad had to go on a vent. Even though he was using the oxygen frequently, it did not help him at all. Sometimes it is so frustrating to know more about this disease than some doctors do.
Dana
 

Peg B

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communication

Hi JMH,

I am sorry to hear about your dad. You asked about alternative ways to communicate. If he has access to a computer and the internet, there is a free text reader program that will speak whatever he types in. Please go to readplease.com and download the free reader. It is completely free and does not go away. It does download with a 30 day demo of a more sophisticated text reader that is similar but has more features. I have only used the free one. Be sure to click on the faces of the computer to choose the computer voice of preference and hear their response. Best of all to you and yours, Peg
 

JMH

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Loved one DX
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CA
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Manitoba
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The Pas
The trouble is...my doctor doesn't indicate whether he knows what he is doing or not. That's why this is so scary. I inquire about a treatment I've read or asked about in the forum, he writes a prescription. You good people have been my guides. The doctor doesn't do tests, he prescribes medication.
I took my Dad in because it sounded like he had a chest cold - he gave him an antibiotic - said he could have bronchitis or a touch of pneumonia. I'm afraid he's not looking at the big picture here.
His biggest concern when I take Dad in is whether or not I want him hospitalized. Sometimes the situation feels hopeless.
I told him that my Dad's left arm is so tender that we can hardly touch it. His answer was to feel his arm and say that he may have an old fracture or that it could just be from the muscle wasting.
I don't know if ALS causes this type of pain! At the end of the appointment he pats me on the back and says "You're doing a good job." I don't know if I am or not - I'm trying, but I don't really think he is...
JMH
 
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