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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 05-04-2005, 11:45 PM   #1
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Tyler Pursley HB User
how exactly does ALS kill you?

i mean why do you die from it, does it like shut your brain down or something?

 
Old 05-05-2005, 07:54 AM   #2
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Re: how exactly does ALS kill you?

ALS is the muscle wasting and hardening of voluntary muscles. You can hold your breath, cough, and swallow voluntarily, eventually these muscles will be effected. It is my understanding that a person with ALS will likely die from respritory complications. Maurine

 
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Old 05-05-2005, 07:33 PM   #3
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Re: how exactly does ALS kill you?

Hi,

A person with ALS usually succumbs to carbon dioxide poisoning. This is a bi-product that we normally breath out during exhalation. A person with ALS eventually gets where the lungs and breathing is too weak to put off this product and this eventually causes respiratory failure. Use of a BiPap does help to prolong the build up of the Co2 (Carbon dioxide) but eventually the lungs do shut completely down.
Under some circumstances a person with ALS can succumb to choking or pneumonia- however they usually pass away from the Co2 build-up/respiratory failure.

 
Old 06-01-2005, 09:53 PM   #4
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Re: how exactly does ALS kill you?

I agree with the above person. A person with ALS usually passes from carbon dioxide posioning, or respitory faliure. ALS is a motor neuron disease. The upper and lower motor neurons die. (motor neurons are what give the body signals from the brain to move or contract a musle) My father passed from ALS June 25th 2003. I was his caregiver. I saw every stage of the disease. Although I must say my father did pass very quickly. He was one of the lucky ones. He did not suffer long. I worked for hospice during that time, and I think that medication helped him passs peacefully. ALS is a horrible disease. I pray that anyone diagnosed will be at peace with themselves and with God.
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Old 08-03-2005, 06:11 PM   #5
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Re: how exactly does ALS kill you?

My grandmother died from ALS at the age of 66. I don't remember all the details because I was only 16 at the time and that was over 20 yrs ago. I do remember that she died within 2 yrs of her diagnosis. Since she lived out of state I did not see her while she was sick, unfortunately. However my mother said it was absolutely horrible. She couldn't swallow or do much of anything for that mater. Her disease progressed very quickly. I'm getting teary eyed thinking back and my heart goes out to all who suffer from this. I would hope that in 21 yrs progress has been made in treating this disease. My prayers are with all of you who suffer from this. May God bless you.

 
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Old 08-17-2005, 01:56 PM   #6
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Re: how exactly does ALS kill you?

My father hospitalized my mother during the last few days of her life. She had looked jaundiced to him, and he called his sister to the house to look at my mom. My mom was combative and uncooperative, seeming disoriented.

When she went into the hospital, the nurses were pulling fluid out of her that was building up inside. It sounded horrid the way my dad described it. She was mostly conscious excep for the last day or so. The doctor inquired if my father wanted to insert a feeding tube, and my mom hollered from her bed, "No, no feeding tube." My father cried, knowing that starvation would be difficult to face. It horrified me when I thought of my mother starving to death, but I know there were other factors that ended her life.

ALS hardens muscles, including the tongue and swallowing mechanisms. The mind, in my mother's instance, was clear. She knew everything that was happening.

My father still cries, 5 years later, when he speaks of that horrible disease he describes with expletives I will not print here. He watched with horror as ALS robbed my mother of her life and took his wife from him.

 
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Old 08-20-2005, 06:03 PM   #7
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flower88 HB User
Re: how exactly does ALS kill you?

yeah but I don't quite understand. a quadraplegic is sort of like the same thing because they usually can't breathe on their own so why do they not die?

 
Old 08-21-2005, 09:58 PM   #8
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Re: how exactly does ALS kill you?

Flower,

To answer your last question, it is true a person who is fully quadriplegic many of the times can not breathe on their own but they are on ventilators. A person that is quadriplegic however is usually able to move their head (and if not using the ventilator full time- can speak if their trach tube is capped with a special device).
Now to the ALS part of this. Yes a person can live a lot longer with ALS (indefinitely) if they go on a ventilator. This is where the quality of life issue comes into play. A person with ALS usually loses all movement (including the ability to move the head, to speak and to eat). Most people do not want to live like that. However there are some that chose this route (and some that do just fine living on the ventilator). There is a lot that also comes into play with that. They would need an amazing amount of family support and people that are willing to take care of them (this requires trained 24 hour around the clock care)- as they are not able to take care of any of their own needs and someone must be there if the ventilator alarms of the person needs secretions suctioned out of their trach or lungs. Most people do not have this amount of friends or family support that could do something like this for them. Now there are some patients who are very well off financially that can pay for this type of care (which would usually cost well over $100,000 a year.)

This has to be a personal decision of the patient that involves the family also.


I hope this has helped to answer some of your questions.

 
Old 08-23-2005, 07:31 AM   #9
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Re: how exactly does ALS kill you?

ALS versus spinal cord injury:

ALS hardens the mucles, it's a continuous process, until even the swallowing mechanism and the tongue are paralyzed. The muscles cannot even be kept limber with physical therapy. A person afflicted with ALS is likey to choke to death due to inability to swallow saliva.

A person who suffers from a spinal cord injury can receive physical therapy and possibly gain some function of affected muscles. If they have been on a respirator, it's possible they can eventually begin to breathe by themselves.

ALS is a mystery. It is not known what triggers this deadly disease or how to prevent or cure it.

Life is much the same for a person with ALS or a person with a spinal cord injury. They both need constant care, as they are not able to feed or groom themselves.

I suggest that you can have your questions answered by doing a search on the internet to compare them both. Also, remember, one is a disease, while the other is caused by an injury.

 
Old 08-25-2005, 04:35 AM   #10
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Re: how exactly does ALS kill you?

Quote:
A person afflicted with ALS is likely to choke to death due to inability to swallow saliva.
It is very rare for someone with als to die of choking, as many have said the main reason people with als die is due to breathing muscles failing to work.

 
Old 08-29-2005, 01:44 PM   #11
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Re: how exactly does ALS kill you?

Quote:
Originally Posted by djs
It is very rare for someone with als to die of choking, as many have said the main reason people with als die is due to breathing muscles failing to work.
Hello, djs,

I know only one person who died with ALS, my mother. I have no idea what the "main reason" is that people die when afflicted with ALS.

Perhaps you can reply directly to the original poster's question with your personal experience and substantiated by sources of research. It is not necessary to reply to me to explain to me how a person dies with ALS. Choking death might be "rare", according to your knowledge, however, as I stated, choking is "likely".

I respectfully request you express more compassion and understanding when replying to delicate subjects such as death of a family member from a horrific, uncurable illness.

 
Old 08-30-2005, 07:39 AM   #12
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Re: how exactly does ALS kill you?

Hi AllysHeart, sorry to hear you lost your mother to als.

My partner has had als for the past five years, I totally understand the consequences of this awful disease.

I responded to this thread in good faith, just like the other folks who replied, I didn't expect to get told I dont have compassion and I lack understanding.

Telling someone chocking to death is likely, is hardly respectful or compassionate. Chocking is a very scary ordeal, i just want to get that point across, that chocking isn't likely.

Tyler Pursley, i do sincerely apologize for this out burst on your thread, i suggest you ask a Dr as he/she is more likely to give you a true professional answer.

I would also like to add, some people die from als due to heart failure because breathing become difficult and put a strain on ones heart.

Good luck.

djs

Last edited by djs; 08-30-2005 at 07:55 AM.

 
Old 09-15-2005, 01:03 PM   #13
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Re: how exactly does ALS kill you?

more and more als victoms are found to have lyme disease, myself included.

jon

 
Old 09-15-2005, 01:50 PM   #14
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Post Re: how exactly does ALS kill you?

Yes. ALS does mimic Lyme disease. ALS can mimic other diseases as well. In my own personal research and experience with ALS, suggests that every person suspected to have ALS should undergo a lyme disease test as part of the diagnoses. It is common to be diagnosed with ALS only to find out later that you have Lyme disease. There is NO cure for ALS. The good news is that Lyme disease is treatable with certain antibiotics. The ealier Lyme is caught, the higher the chances are for a full recovery. Again.... my thoughts and prayers are with all who have seen this disease manifast.
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Old 09-16-2005, 04:08 AM   #15
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Re: how exactly does ALS kill you?

Quote:
Originally Posted by urgent497
I read on some ALS site (I think als.com) that in some people the disease can remit or halt progression. that would be a cure. but it said it happens in a small percentage of people. so if this is true, then there's a cure. that means those people must be eating or drinking or taking some kind of medicine for this to happen
There's no cure. At least as far as I know. I believe there's medication you can take.. but it's not a cure.

 
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