Enery Levels

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ronrfc

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I see from some of the topics posted that some people have quite high enery levels. Some people are working all day and singing in the church choir. I am currently taking Rilutek, anti depressants, gabapentin and my own brew of Co Q-10, Methyl B12, Beta Carotine, Vit C, E and Selenium. Is there something I should consider adding to my brew to increase my energy level?
 

Al

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Looks like you have just about everything covered there. Some of us just have more energy than others. How is your sleeping? I was told that when I went on the Bipap that my energy levels would increase due to easier breathing at night and better sleep. I guess it did work but I'm having some trouble with the mask and some other issues so am not as rested as a while back.
So what I'm getting at is, Have you had a sleep study? Do you wake up with mild headache and lethargy? Any numbness in the extremeties? Any of these could be a reason to discuss your sleep habits with the Respirologist.
 

ShellyRenee

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Bipap

Hi Al,

Silly question, maybe? Does this Bipap machanie help with Night coughing attacks? My mom has terrible coughing attacks day and night. Her throat muscles are very weak, tomorrow we go to the doctor for her to say YES to the feeding tube. Any words of advice on this? if you have any.

Thank you,
Shelly
 

Al

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Hi Shelly, in answer to your question about the Bipap. It does have a humidifier on it and if you set it low you can get quite dry in the mouth. I do cough in the day but can't recall having a coughing spell with the Bipap on.
As for the feeding tube I don't personally know any one in our group that has one but there are people here that do have them so hopefully you can get some answers back before you leave.
 

Granny

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Dear Shelly,
I posted last night in answer to your feeding tube topic, but it must have gotten lost in cyber space!
Just wanted to say that my experience with a feeding tube is positive. I had mine installed in September on the advice of my doctor. I did not begin to use it for feeding until after Christmas. By that time I was loosing weight and energy. The tube feeding keeps my weight steady and I have good energy. I know that the decision to have a feeding tube is a personal one, with pros and cons, but I am glad I made the decision to have one. It was not a big deal getting it in, and quite easy to learn how to use it.
I am thinking about you and your Mom and pray that she might be at peace with the decision she has to make.
Leah
 

leslhart

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Jul 28, 2005
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Hi Shelly,
I've had a feeding tube for almost a year now. I was having a lot of trouble swallowing and had to be very careful not to choke. Eating was becoming a chore and I was losing weight. I'm only 39 years old and was still working at the time, so the thought of a feeding tube was a little unsettling. I have great respect for my doctor, and when he said the time is now, I did it. It was the smartest thing I've done. It was a quick procedure, not even 10 minutes. I stayed two days at the rehab center, and myself and my wife learned all there was to know about how use and care for the tube. I no longer have to worry about eating. I still eat normally, but I can't eat enough to maintain my health, not to mention the fear of choking, or lung infection from accidently inhaling food or liquid. Two cans of "liquid nutrition" in the morning and two at night with light eating during the day and everything is fine. Within a month my weight was back up and has stayed there. If I don't feel like eating I don't have to, if I want to, I don't have to eat a lot. The tube itself is no problem at all, an elastic around my waist keeps it tucked under my shirt, unnoticeable. Don't get me wrong, I miss eating , but with ALS you either adapt or go crazy. You'd be amazed at how a spoonful of spagetti sauce can cure the craving for a pasta meal. It's about survival and doing whatever it takes and trusting the advice of your doctor
Hope this helps
Les
 

Granny

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Les,
You described the experience with the feeding tube so well, much better than I did. I was just interested in what the name of your "liquid nutrition" is?
Leah
 

leslhart

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Jul 28, 2005
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Hi Leah,
The liquid nutrition I take is called TwoCal HN. Its made by the same company that makes Ensure, except this stuff is high calorie! 470 calories per 235ml can. You can't drink this stuff, it makes Ensure taste like a Dairy Queen sundae. But 4 small cans gives you almost 2000 calories. More bang for the buck! We have to buy it from the hospital. Its no pie a la mode, but it seems to be working fine.
Les
 

me

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Apr 26, 2004
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Les - I just read your post and that is great that it is working out for you. I like your attitude about adapting! It is an encouragement to me to see people at all different places to see them adjusting....not that it makes every day perfect, but I'm sure it makes many days better. I will learn from you all. -me-
 
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