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Super Chevy

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PALS
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Hi, I am new to the forum. My dad was diagnosed with ALS 1/06, but symptoms started 9/04. It took a while to get the diagnosis. His started in his leg as a slight limp and you all know how the rest goes. He is in a wheelchair and has maybe 5% usage in his legs but has 95% usage of arms and upper body. The last few weeks, things have started progressing a lot faster. He has had a litlle trouble with the swallowing and getting choked, nothing major. He has been using the cough assist and that has been great. His voice has changed a little in volume and his breathing has changed a lot. He just can't get a deep enough breath. They are trying to get the Bi-Pap, but his numbers at the dr. are to high for insurance and medicare to cover it. A few months ago he started getting heart burn and would have a metal taste in his mouth, that eventuall passed. Now in the last few weeks, he said that his food feels like it just stops in the middle of his chest and will not go down, then he will get sick. After that, he is ok for a little while but that takes away any energy that he had, which was not much.

I was just wondering if any one else has those same problems? Any advice would be greatly appreciated.

Thanks
 

Super Chevy

New member
Joined
Jan 15, 2007
Messages
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PALS
Country
US
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Alabama
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Valley
Hi, I am new to the forum. My dad was diagnosed with ALS 1/06, but symptoms started 9/04. It took a while to get the diagnosis. His started in his leg as a slight limp and you all know how the rest goes. He is in a wheelchair and has maybe 5% usage in his legs but has 95% usage of arms and upper body. The last few weeks, things have started progressing a lot faster. He has had a litlle trouble with the swallowing and getting choked, nothing major. He has been using the cough assist and that has been great. His voice has changed a little in volume and his breathing has changed a lot. He just can't get a deep enough breath. They are trying to get the Bi-Pap, but his numbers at the dr. are to high for insurance and medicare to cover it. A few months ago he started getting heart burn and would have a metal taste in his mouth, that eventuall passed. Now in the last few weeks, he said that his food feels like it just stops in the middle of his chest and will not go down, then he will get sick. After that, he is ok for a little while but that takes away any energy that he had, which was not much.

I was just wondering if any one else has those same problems? Any advice would be greatly appreciated.

Thanks
 

hboyajian

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Have you been to see a speech therapist to examine the swallowing issue in detail (barium swallow test or another assessment whose name I can't remember) and to get trained in techniques to assist with eating? It might be time to experiment with the consistency of the food. My dad needed food blended to swallow successfully and he used a product called thick-it in liquids to make them posssible for him to swallow. Too thick or too thin were both impossible for him to get down. The next step would be to get a PEG tube to get nutrition into the body directly.
The breathing issue and the equipment needed to assist is somthing I have some strong opinions about. I think the guidelines for when insurance starts to pay need to be changed so people can get what they need sooner, before it becomes an immediate life or death problem. Did they just do a pulmonary function test or did they also do a blood test for oxygen and carbon dioxide levels? If the carbon dioxide is too high or the oxygen too low, you need the bi-pap machine now. This will also kick the insurance in. If there is any way for you to pay for the machine yourself, it could be worth it to get one to try out at night to see if it makes a difference. I would have taken out a personal loan to pay for the bi-pap had I understood how fast my dad's breathing ability was deteriorating.
 

quadbliss

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Messages
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PALS
Diagnosis
07/1998
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US
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California
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Benicia
Hi Super Chevy,

Sorry to hear about your Dad. I never experienced the symptom you describe, but it sounds like it may be time for a PEG (feeding tube). If this is happening often, he is probably losing weight. When PALS lose weight, they normally lose some muscle which they can never get back. Most people on this forum (including me) will tell you that a PEG is no big deal.

Mike
 

Super Chevy

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Yes, we have been to the speech therapist at the clinic he goes to. She showed him the "chin tuck", that would be better for him swallowing and it has seemed to help. She did also go over with him the transition to softer foods. He has tried to start doing that, but we only recently had that discussion with her.

They did the normal blowing test that they have down everytime to measure his breathing percentage, which if I remember correctly, they determine that by date of birth, weight and height. They have not done any blood work as far as checking the oxygen or carbon dioxide levels. I will mention that to my mom so she will know to ask about that. I fully agree with you on the insurance and medicare. If they would give those out when actually needed instead of when it is really too late, it would make a big difference.

He has said time and time again that he does not want a feeding tube, I understand but I do not want to understand, if that makes sense. I guess that is what you would call selfish.

What is exactly is invloved in the PEG? I have not read much on that, I guess because we have not got to that stage yet.

Thanks!
 

Super Chevy

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PALS
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Alabama
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What exactly is involved with the PEG? I have not read up on this, I guess because we have just gotten to where it might be necessary...

Thanks
 

quadbliss

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Messages
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PALS
Diagnosis
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A PEG is a pliable tube that is surgically implanted in the abdomen. The inner end is inside the stomach wall, and the outer end hangs loosely outside the body. Once the tube is in place, you have the option of eating by mouth and/or liquid nutrition through the tube. Because the food can go directly into the stomach, there is no longer a danger of aspiration or incomplete swallowing. The only maintenance requirement is usually a twice daily cleaning of the site with saline or hydrogen peroxide.

Mike
 

hboyajian

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Lost a loved one
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A PEG tube is a flexible plastic tube which goes through the abdomen and directly into the stomach. It is held in place by discs around the tube on the inside and the outside. A large syringe is used to apply liquid food products (my family used Ensure, vanilla, so it wouldn't contain food dye) and water. The warm water before and after flushes out the tube to keep it clear. We rolled it up and taped it to his stomach underneath his shirt when not in use. My dad was not keen on the idea, but he also wanted to keep his weight up and not continue to wither away. He had 2 appointments with the gastroenterologist to ask questions before he set the date for the surgery. Your dad could go talk to the doctors about it just to get information and still say "no" to the procedure if he decides against it. It is a very personal decision, and there is some potential risk involved.
 
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