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Xtina1217

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FL
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Hello all...I dont know what to say besides I need your help! I am very confused and want an honest answer that isn't "Can't really say" or "each case is just too different"

My father was diagnosed with ALS only 5 1/2 monthes ago and since then he went from walking slowly on his own to being 100% wheelchair bound and cant move his hands. He can't feed himself, has trouble breathing, he can't do much of anything alone anymore. I am really scared and just want to know... what's next? How long do I have left with my dad?

I know that this is a hard question to answer because it's unknown, but can someone give me an opinion? something? I'd rather know, or have an idea then be lost like this anymore!

I'm sorry if I'm coming off too strong. I just feel like I have a question that no one will answer! Please help me, be honest! I can take it, I'm just tired of people sugar-coating everything!
 

sima

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Apr 6, 2008
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I don't think anyone can answer that question. I am fairly new to this as well. My mother in law was diagnosed in Jan. 07 and back then she could only walk with a walker. She was admitted into the ICU with resp. failure in mid Feb. Now she needs nocturnal ventilation and she has a permanent feeding tube in her stomach. We have been told she has 3 to 6 more months but even still, no one knows for sure.
I think the breathing is key. How labored is his breathing? Does he use a bipap?
 

Icanmanz

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Tomball
Wow, Xtina! I wish I could help you, and I know you don't want that "I wish I could!" All I can tell you, dear, is that it is so hard to figure out Als. Take it from this: My son was diagnosed'ed on 3-29-06, and he departed on 6-03-07 that's only 15 mos. after diagnosed. I have seen folks on this forum that last years. Als affects our Pals differently. My son was doing fairly well after diagnosed, bless his heart what else could he do when he was handed a "death sentence?" He did okay, and was strong minded, and accepted his fate (easier said than done, eh?) until the end. When April '07 came around he started to progress fast, I could see the changes almost daily, and it was heartbreaking. He managed to fly to Disney in Orlando with his family on May 3, '07, they were there for a week. It was very tiresome for him. When he made it back from Orlando I saw another huge change in him, but I really and truly thought that he was going to be around for at least another year. A month later he was gone, and I was left in total shock with a broken heart. All I know is that he is no longer suffering. I refuse to let his memory die. I have accepted his departure, and am at peace now with God's help.
This illness will turn you inside out. Nobody wants to watch their loved ones suffer. The best you can do is talk to your Dad's doctor. Next time your dad has an app take your questions with you (jot them down.) This forum offers a lot of help and ideas. Have you read all the posts from the beginning? I have learned so much from this forum. These Pals and Cals are so helpful. I pray to God I did not dissappoint (sp?) you. May God bless you, and your Dad. Keep us posted.
 

Jamiet

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you should look into the lithium treatment

ALS is not a pretty disease, it's very tragic.
 

cukita99

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i dont know if this well help u, im wheelchair bond, cant speak, cant do much 4 myself for 2yrs i have been like this. nothing has changed, n i thank god every day i wake up. i am lucky i can still eat, think, n breath on my own. just enjoy ur dad.
 

quadbliss

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Hi xtina,

I will give a direct answer to your question from a different point of view. I have had ALS for nearly ten years, but not because I have extremely slow progression. I have a high guality of life, and therefore chose life extending technology such as Bi-Pap, vent, and feeding tube. Many PALS feel miserable and don't see any point to extending their lives. This is a very personal choice. There is no right or wrong answer, and I personally feel, to try and pressure a person in one direction or the other is morally wrong. I think as a family, the best thing we can do is simply support the PALS decisions.

So the direct answer to your question is: it could he several months, or it could be twenty years. :confused:

Mike
 

CindyM

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Hi Xtina. I am sorry it is going on like this. There really is not much else to say. You already know that you should enjoy each moment as it comes, unfortunately most of us need time to plan and prepare but ALS presents a constant need for adjustment, and none of the adjustments are any good. I am sorry. Cindy
 

trustinggod

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I know how you feel. I understand your need to know what is coming next. Less than two years ago I came here and asked the same questions. Thankfully I got straight forward, honest answers from someone who had just gone through the final stages with a PALS.

I wish those posts from October of 2006 were still accessible. Perhaps they are and I just don't know how to get to them. I posted just yesterday asking where they are.
If I find them I will certainly let you know.

In the meantime, I'll tell you what I know from my experience. Remember that each person experience with this disease is unique.

It sounds like your dad has progressed really fast - 5-1/2 months from diagnosed to his present condition which, based upon your description, sounds near the end of the road unless he gets help for his breathing issues. Does he choke when he eats? Where is he at with his lung function %? Does he have headaches in the mornings? Can he hold his head up? Can he still speak?

This web address; http://www.hospicenet.org/html/preparing_for.html was a huge help for me as I got prepared to handle the final stages with my friend. I found that if I had already prepared myself with the information of what was to come I was better able to
help Linda when she got scared. I was still scared but at least I had freaked out alone and gotten over it by the time she needed me to be calm and help her know that I was prepared and willing to help her.

Basically it went like this; her neck became more and more unstable and her head would fall back or forward if it was not supported when we transferred her. Excess siliva increased significantly the last month and she required constant wiping of her mouth and then the last weeks, suctioning. She became extra tired and didn't want to do much (this was unusual for her) and she began to have bad headaches in the morning. Her speech went from not good to horrible in a matter of days. As soon as she felt the first little bit of "air hunger" we began giving her the Ativan (sp?) and
morphine. These are part of the "comfort meds" provided by hospice. The hospice nurse had done a great job of preparing me to know when, how and how much to give.
Family and friends gathered around Linda's bed those last three days and she was actually the most comfortable I'd seen her for the past couple of weeks. Honest to God
she was peaceful, able to speak a little better and no longer needing constant suctioning. She was able to visit, dictate letters to her mom and sister, laugh, cry and
express her thanks to all gathered around for their support. The night before she died,
as 18 of her closest family & friends were gathered around her bed praying and singing her favorite praise & worship songs, she looked at us all, smiled a beautiful crooked ALS smile and said, "This is beautiful. I hope it's like this for each of you." She felt loved and cared for in her final days and hours, was comfortable - or might I better say - not in pain, and not afraid. She knew, because of her decision years ago to accept Jesus Christ as her savior, that she'd be carried accross the threshold of Heaven in His arms
and one day be reunited with all of us gathered around her that day. When she passed the next day many of the same people were with her around her bed again
rubbing her feet, singing to her, and supporting her husband, son and daughter as
she peacefully slipped away. I was at her head wiping her brow most of the last two hours of her life and I promise you it was not the awful experience I expected it to be.
Sad for sure but also very comforting to know that she was not suffering pain or fear.
She closed her eyes and slowly her breathing became slower and slower until she simply stopped breathing altogether. It was so peaceful I needed to listen to her chest to know that she was gone.

I know this was only possible because of the comfort meds hospice provided and her
faith in Jesus which gave her peace about her future.

Linda died 4-12 years after diagnosed. She was 47.

I hope this helps you.
Jeanne
 

MamaSara6

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Christina---I'm so sorry about your dad. It is so hard to deal with fast progression! Obviously, ALS sucks all the way around, but it is really difficult when the PALs, CALs, and family members don't have any time to adjust to each change. With my mom, she never seemed to have more than 3 days at a certain level; it was almost constant deterioration. Let me tell you, "how long?" was a constant question on our lips!

Mom started showing symptoms 7/1/06 by slurring her speech. She was diagnosed 11/10/06; using a walker by Thanksgiving; totally wheelchair bound in March when she got her feeding tube (it pushed her over the edge in terms of walking); in June she opted for a catheter and being bedbound because transfers were too exhausting. I don't really remember when she got the bipap, but it scared her and she never got used to it; only used it about an hour a day when sis was in the room with her. I think it was around May. She died peacefully about 6 weeks after the catheterization. The feeding tube was never really a necessity, except for meds and water, because she preferred to eat and did so up until the end even though it was all mush. Her very limited, very hard to understand, speech lasted until the last couple of days, too. One morning it was just gone, all the vowels sounded the same.

We really knew the end was near when she couldn't drink her morning cappucino and didn't want to eat very often, and finally, not at all. I think life just wasn't worth living without that cappucino! :lol: I can laugh about it a little now because she was a sweetheart, and I think she even said as much on one of my visits. She really enjoyed that warm a.m. beverage and it started her day off right; she and sis had their coffees together.

I could only visit every couple of months, but I cherish those times spent with her. I know we all want to know when, and how long we have with our loved ones, but it's not possible to know that. The reality is that you could go first! My sister is of the opinion that a vent would not have done any good, but I don't know if that's true. But Mom was adamant about not prolonging her suffering, or my sister's in that way. She was ready to go Home. Quadbliss, OTOH, presents another side. It can be beautiful staying here with your loved ones!

God bless you and your dad!
 

andyvaughn

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ca
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thousand oaks
Christina,
I am so sorry to hear about your father. My husband has a rapid progression as well, and as noted by others on the forum, it doesn't give you time to adjust at all before it goes to another level. I wish also that someone could tell us how long, but really, in the big picture, NONE of us knows the answer to that question, and ALS certainly isn't giving up answers easily. I do know that many ALS patients seem to plateau, I know a man who had a rapid and relentless progression - for the first few months, then it just stopped progressing, that was last summer. He progressed from able bodied to wheelchair bound/feeding tube in under 3 months, but hasn't gone any further since. As a person who really likes to know, I find that very frustrating that I don't know. We can't make plans for the future any more, because we just don't know what that brings. I am finally learning somewhat to live with that. I hope you find some peace amidst it regardless...I wish I could tell you what to expect, heck I wish I knew what to expect...but today I have to live with the fact that I don't
I also really appreciate what quadbliss said. My husband, at least today, does not want any life prolonging interventions, such as a peg or bipap, and as much as that choice terrifies and hurts me, I do not pressure him to consider changing his mind, as it is his choice to make. I simply tell him that no matter what choice he makes I will stand by it, honor it, and do everything in my power to make him comfortable.
God be with all of us living with this disease... I wish you peace
Andrea, wife of Pals Jim.
 

caroliney

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Apr 27, 2007
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Loved one DX
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South Carolina
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Goose Creek
Your Dad's ALS

I am so sorry in what I am hearing in your cry for help, as I have shared this moment, also.

My Husband, did want to live, and he was diagnosed 2 years with ALS before he passed. He did desire the quality of life and could even walk, use his hands and body to get around rather well. His speech was the first to go and the breathing was becoming very difficult for him.

On July 16 of 2007, he did the PEG, as he was having difficulty swallowing food, had 36 lb weight loss. In October he was admitted to the hospital due to problems with breathing. Upon Doctors advice that his breathing would improve, he did the Trach operation on October 24, 2007. He was discharged on October 31, 2007 with great difficulty in his breathing still.

On November 5, 2007, my husband quit breathing due to a Mucous Blockage Plug, which he had in October and no one seemed to detect this, although he was in and out of the hospital several times for breathing issues.

So, my advice to anyone that has a loved one educate yourself by learning everything you can about ALS and try to help your loved one. I was told ALS is like a snowflake, and this is very true. No one seems to be alike in the years of life, nor symptoms. Some can live 26 years, while others live 1 year or so. It is a complex disease, so while I understand how you feel, please try to take one day at a time. I do feel the way anyone looks at life, does have a tremendous weight on your health issues. Having said that, each of us look at life differently, and it is hard to say how another individual will feel inside about their body slowly becoming paralized, unable to function as they have in the past.

Stay in touch here and try to vent and asks questions for support, as this will help you through it. I always came here for advice especially from Mike, he has such an upbeat atitude, which is good and I think it does make a difference on your health. Not sure, though, if I would have this atitude if it were me to be honest. Some people are stronger than others.

I only know as a CALS, I tried to educate myself, through this site, all Medical sites, the ALS foundation sent me 5 tapes free of charge, and I was searching to the day I lost my loved one. This is ver difficult, but try to stay positive and not let this horrible disease bring you down. Treasure each moment with your loved one as if the last, as no one can give you an answer how long, not even the Doctors.

Hugs,
Caroliney
 
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