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Amyotrophic Lateral Sclerosis (ALS) Message Board
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Old 10-28-2007, 09:47 PM   #1
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vgranada HB User
end stage ALS life expectancy

Hi, my dad (68 years old) was just diagnosed with advanced ALS. Major symptoms appeared 5 months ago; now he has lost 50 lbs, and is on a trach with BiPAP and a feeding tube. I'm trying to plan my life (for the worst) but hope for the best. I'm asking for anyone who has had a similar experience about the life expectancy at this point. I know there are many factors that can prolong this, but I just need any figure to start plan around. I'm a teacher in a different city but I'm planning to move home, it's just a matter of when. I want to be close in case anything happens. Any feedback would help. I'm glad I found this forum. I'm new to all this. Thanks in advance.

 
Old 10-31-2007, 10:28 PM   #2
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Re: end stage ALS life expectancy

Hi, I was am new to these boards but I have dealt with ALS. My father passed away a little over 3 years ago from ALS at age 61. Pretty much everyone progresses at different rates, but usually ALS patients pass away from the disease 18 to 24 months after been diagnosed. My father passed away after a little less than two years from time of doctors confirming what he had. He did show symptoms for about 2 years before this time. He was on a feeding tube, his breathing was fine, he was unable to talk and at the end walk anymore. He went to a respite house facility for 3 months till he passed away. We were unable to take care of him and he was mostly bedridden. He did have the help of visiting nurses daily and would go to the ALS clinic when he was home. It will be a long road and alot of care. Enjoy the time together. I'm hope that helps to answer your question. Take care... I hope everyday modern medicine will eventually find something to help all the ALS patients out there.

 
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Old 11-01-2007, 11:43 AM   #3
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Re: end stage ALS life expectancy

Thanks Sweetgal,
I appreciate the perspective and what to expect. The neurologist told us less than 6 months based on his deterioration. We are moving him home soon and I'm quitting my job to help my mom care for my dad. It'll be a tough 6 month, but we're hoping for the best and living like it's our last.

Thanks.

 
Old 12-23-2007, 11:07 AM   #4
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louischip HB User
Re: end stage ALS life expectancy

i dont see any posts in a while. i hope your well. my dad is 59 and was diagnosed with als only in may. he has symptoms only a few months prioir and they treated him for acid reflux. he has bolbar als which is an extremely fast progressing form. he only has a few weeks to live.

if your dad is home, call your local hospice house. they accept all insurances including your state funded health insurance and free care. they can arrange most durable goods you may need like a bed, special chair etc. also, people with als AUTOMACIALLY qualify for disability. they can not be turned down. you will have to follow the same application process, but they waive the 24 month wait period. you will need documentation for the doctor.

good luck and pray that the disease takes your dad quickly. it is a terrible terrible experience for both parties.

 
Old 01-08-2008, 07:50 AM   #5
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Re: end stage ALS life expectancy

How is your dad doing now?

 
Old 01-08-2008, 07:52 AM   #6
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Re: end stage ALS life expectancy

As one poster said, enjoy every minute together. Even the tough ones. This does not go on forever.

 
Old 01-18-2008, 07:57 PM   #7
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Re: end stage ALS life expectancy

Thanks for asking. my dad passed away on January 1 2008 in the morning. the 2 weeks or so prior to his death, he was very weak and bed ridden. he failed very quickly.

his voice was weak, and reduced to an almost muted grunt. he could slightly move his fingers and toes. he couldnt shake his head. it only twirled. he couldnt even hold it up.

my dad lived with my sister for the last 10 weeks of his life. in the last 2-3 weeks of his life, she had to move every him every time he had an itch or was uncomfortable. sometimes this took hours. literally. my dad opted not to have the feeding tube installed and not to have the trac. in his throat. he did have a suction machine to help suction the saliva since he couldnt swallow it and choked. that was the most wonderful thing my sister said.

the last weeks, hospice became involved. they provided the "comfort pack" it has small amounts of pain relivers. starting with tylenol and moving up the scale. my dad didnt live long enough to need more than a small amount of morphine every few hours. he would even refuse the meds.

my dad was a vibrant full of life man who loved to be a big shot. he was reduced to a 130 pound skeleton or shell that had a thin layer of skin draped over him.

but he had his full mind. or as much of a mind that one can have after being trapped inside himself for all of these months with little ways of communicating and facing death. not being able to clean yourself or feed yourself. having your full mind and all your faculties is just a terrible thing. i remember the week before my dad died, i sat next to his bed as he was trying to fall asleep. i cried. i tried so hard not to. he pretened to be asleep. cracking his eyes to see me. then he started to shed tears. he tried to tell me something. i rubbed his head, told him i lvoed and said to go to sleep. i sat with him for a long time. just holding his hand. he looked every few minutes for a while to confirm to h imsef i was still there. he just did not want to be alone.

make peace now. and allow yourself to grieve. there are 7 steps and we must all go through them to properly grieve the loss and carry on with our own healthy lives. we'll all grieve in our own ways. but grieve.

i am however grateful that my dad did not have to stay in this cage of a body for a great deal of time. just days before he died, he said he wanted so badly to die. he couldnt take it any more. (of course this took a great deal of time to get out.)

my sister made a chart of the alphabet on a piece of cardboard. when my dad could no longer move his hand himself, my sister would move the board andmy dad would wiggle his finger over the letter he wanted. after a few words you could just about figure out what he wanted. this was much less frustrating for him and all of us who tried to talk.

good luck and just remember that you're not alone in this. we are all here too!!

 
Old 01-18-2008, 08:02 PM   #8
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Re: end stage ALS life expectancy

Quote:
Originally Posted by barbara11 View Post
As one poster said, enjoy every minute together. Even the tough ones. This does not go on forever.

this dosent go on forever for the person with als. but it seems to for those who have loved the person and watched them die a little more each day. but you are right. ENJOY EACH DAY. EVEN THE TOUGH ONES!! as the days and months go by, there will be more and more tough ones and fewer and fewer good ones. please enjoy the final days and weeks no matter how tough for either of you. your loved one may just want you to sit and keep them company. my dad loved when i would just sit and watch tv with him. no need to talk. just be there.

 
Old 03-12-2008, 10:24 AM   #9
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vgranada HB User
Re: end stage ALS life expectancy

hey thanks for the concern. all is going as best it can be here. my dad is starting to show more progressive signs, but he is in good spirits. Has never been depressed yet or angry, unlike myself and mom. The toughest part is at night when he sleeps in only 2 hours stretches and needs our help at those times. Just doing the best we can.

 
Old 03-17-2008, 08:47 PM   #10
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Re: end stage ALS life expectancy

I just read the various posts concerning Fathers with ALS. Interestly enough, my brother who is 50 years old was diagnosed in 2004 and is still alive. The disease has progressed slowly taking away his ability to move anything but his eye lids, one eyebrow, a finger and a couple of toes, his tongue, and very limited movement with his jaws; he has been on a ventilator a year and half after his diagnosis, has a feeding tube for medicines only and continues to eat (more like mushes his food, the little that he eats with his tongue against the roof of his mouth). He can no longer talk; grunts and drools a lot, but with the aid of a wall chart and a new computer software program has preprogrammed messages which he moves with his eyes and eyebrow does pretty good. His spirits are pretty high considering everything. Unfortunately, we had to place him in a nursing home as he condition is such that he needs round the clock critical care more than we could provide. Anyway, I say all of this to say no two people are alike in how long they will live or how the disease progresses. I truly understand how difficult this must be for families and highly recommend that you seek support and always remember to take care of yourselves as you take on the task of taking caring of your loved ones. My thoughts and prayers go out to you all.

 
Old 03-28-2008, 07:07 AM   #11
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Re: end stage ALS life expectancy

Quote:
Originally Posted by ABigSister View Post
I just read the various posts concerning Fathers with ALS. Interestly enough, my brother who is 50 years old was diagnosed in 2004 and is still alive.

Anyway, I say all of this to say no two people are alike in how long they will live or how the disease progresses.
Some people really do stick around for a while.. I don't know if that's a good thing or a bad thing. A friend of mine's mom was diagnosed when we were in elementary school. We're in our nearly mid 30's now, and she's still alive. Another friend's dad was diagnosed and died w/in a couple of years. You just never know. It's all so mysterious.

 
Old 09-17-2008, 06:01 PM   #12
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Re: end stage ALS life expectancy

I would like to hear from anyone who has had experience with an ALS patient on the ventilator. My father had ALS and he did not choose to go on the vent. My mother in law was diagnosed with ALS ten years ago and has been on the ventilator for the last eight years. It has been a long battle and the family is wearing down. My mother in law has been unable to communicate for at least 6 years and I know in my heart that she is tired of being a prisoner in her own body that no longer serves her. The family will not even think of taking her off of the vent and they are just waiting for her to go on her own. This has been a long battle and I am just wondering how much longer will she have to endure. If anyone has any information that would be helpful or informative it would be greatly appreciated. I love my mother in law and I see that she is miserable. We are ready for her suffering to end however there seems to be no end in sight.

 
Old 10-09-2009, 12:53 PM   #13
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Re: end stage ALS life expectancy

I'm terribly sorry for you and your father. There is nothing anyone can say to prepare you for this disease. I lost my Grandfather to ALS and my Mother has been suffering with ALS for approximately a year now.

There is no timeline, no one can ballpark or predict the progression, however, everyone will tell you that there are times when they seem to be deteriorating quickly and times when it seems to level off.

My only advice is to do what you can to be there. Your Dad will need as much love and compassion as possible. Take advantage of the time you have with him. Provide him with the security of knowing that you have helped him put his "house" in order.

Everyone is different and will handle tragedies such as ALS in a different way. My only thought is to do everything I can to be with her because once she's gone...that's it...not one second can I get back. All of the things I'm putting on hold in my personal and professional life can wait because once she's gone, I have the rest of my life to have peace in my heart, no guilt, no regrets, and another opportunity to focus on me.

I will keep you and your father in my prayers.

Take Care

 
Old 10-16-2009, 06:50 PM   #14
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Re: end stage ALS life expectancy

Hello, I am so sorry to hear about your father. My mother passed away with ALS 9 years ago. I still miss her! From the time that symptoms appeared to death was aabout 1 4 1/2 years. The last 3 were horrible, totally bedridden and trapped in her body. My brothers and I tried our best to make life as pleasant as possible. She participated in a drug trial using Ruletek and something else. We gave her 2 shots a day. It prolonged her life but it did not give her quality of life! If I were to ever get it I would not prolong my life. Some people, depending on the type of ALS that they have, don't live as long as my mother did. She was 63 when she passed away. I lived 1 1/2 hours away from her and after she got to the point of being on a bi-pap machine and had a feeding tube I could only come on the weekends. We managed to keep her at home with 24 hour nursing. It was a very hard to go through and I could not have made it without my faith in God! I hope this helps you and isn't too direct. Please let me know if there is anything else I can help you with.

Last edited by moderator2; 10-16-2009 at 07:09 PM. Reason: posted contact info - please read the posting rules

 
Old 11-12-2009, 08:13 PM   #15
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Re: end stage ALS life expectancy

My uncle started showing signs of ALS over 9 years ago. I remember I was staying with them when he first started showing. He detiorated pretty quickly over the next 2 years, and it was years before anyone ever figured out that it was ALS, they were tossing around ideas of weird reactions to chemicals and stuff that he could have been exposed to working as a vetrinarian and as a farmer. After 2ish years he was mostly restricted to a little power chair, with his hand fastened to the contoller stick. But, I guess we as a family/and he has been lucky. He took up swimming. Sure it was odd, having to have people help him swim, with a life jacket on and all, and it was mostly just jerky movements. But it helped keep him in shape/muscle tone. Many people attribute his great health to this. He has his bad times, but for the most part he's plateaued. He can stand with a walker, operate the computer with a funky special mouse that works by head movements, rip around the farm in his cart, talk to people (though not for long) etc. They wanted to put a feeding tube in him years ago, but he's refused.. and still enjoys food - they say food is the way to a mans heart. He's pretty happy to be alive, we didn't expect him to live long enough to see his son graduate, or his daughter get married, or have her first kid.. but he has, and he's often working on ways to raise awareness and support for ALS. He's a real inspiration to us. Given such a horrible lot in the prime of his life (around 40 than), he's gone through it with a calmness that is amazing. I look forward to another 10 years of inspiration.

 
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