How much longer?

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Tampster

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Loved one DX
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My loved one has been diagnosed now almost a year, but we really feel that they have had it much much longer. We are now blending their food, they can barely talk and can't walk. We want to talk more to our children and prepare them but don't know how! How much longer can we really expect our loved one to be here?
 

Nikki J

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PALS
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Impossible to answer. Everyone progresses differently. The 2 things that most often kill us ( aside from accidents) are breathing and nutrition. If you plan a feeding tube do it very soon. You presumably have some idea of respiratory function if you go to a clinic. Decline is not necessarily predictable but it would be something to look at. Are they using bipap? Will they? Vent?
Sorry I know it is tough. How old are the kids and what have they been told?
 

davbo49

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PALS
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kanas
first off welcome. i know you don't want to be here much as us.

this don't hit everyone the same. this has taken my hands arms now my legs are starting to go and more to come.

thy say 2 to 5 years for anyone but what im finding out. there is ones that had this for more then 20 years. some are saying that it have came to a stop and they haven't lost anything for awhile.

we only can take one day at a time and hope it's a good one. you came to the right place there is a lot of help here but i am sorry you are here.
 

kingsaustin

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Joined
Sep 1, 2013
Messages
27
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Lost a loved one
Diagnosis
04/2011
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US
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TX
Hi Tampster,

I'm so sorry you're in this predictament and unfortunately I remember thinking the same thing. A year ago. We had just come out of the hospital for the flu and pneumonia. At the time my husband (Rick) had been to emergency a few times due to falls and was no longer able to walk, albeit he was eating, swallowing and talking well. In May of 2014 we had the scare of our lives. On what seemed to be a normal day, he ended up having respiratory and heart failure. Thank God for CPR and the medical professionals ability to resusciate him he lived through it. After a month in ICU, leaving the hospital with a trachetomy and a month in rehab we ended 2014 on a much better note than we started it. That said, he is in his 5th year. We were told most ALS patients live 2 to 5 years and I will say, my aunt (married to my mom's brother) last 2 yrs once diagnosed, my husband's best friend, who grew up across the street three/four houses down, same age, same environment, same hobbies, etc., got diagnosed the same time my husband did and passed a few months ago.

All that being said, we concur with everyone else in that each ALS patient progesses differently so there is no telling on the "how long" question. I will say my husband's doctor, Dr. Stanley Appel out of Houston Methodist in Houston, TX told my husband that he believed a positive fighting attitude and mindset of the ALS patient seems to have some impact on the person's time. Keeping that faith and fighting spirit goes a long way and I will testify to that as I've witnessed my husband at his worst and at his best. One day at a time that's how we cope with good days and bad days, but with the faith that regardless of the bad days (because when they're bad they're bad) they too will pass.
 

Tampster

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03/2014
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TEXAS
They are suppose to try to get his feeding tube within the next 2 weeks (if it isn't too late). He does have a bipap machine. He is turning 72 on Friday. We think that he has had ALS for at least 3 years already. He is going down hill very very fast. Thank you for responding!
 

Tampster

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Joined
Jan 14, 2015
Messages
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Reason
Loved one DX
Diagnosis
03/2014
Country
Uni
State
TEXAS
The kids are his grandkids and they range from 21 to 1 years old. The older ones understand what is going on, but the younger ones don't. It is like one day Grandad was laughing, talking, riding the 4 wheeler with them and the next he can't walk, talk, eat or hardly even smile.
 

affected

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Welcome to the place no one wants to be Tampster.

It's so hard watching this isn't it? I know that in many ways both Chris and I wanted answers to this and yet at the same time we didn't.

As you have seen already it's a question that just can't be answered. My Chris was rapid progression. At the time it seemed to drag on with him losing something every day. Looking back it seems now that it was even faster than it was!

We can give you support here as you battle this. The peg will help with his quality of life. It will help keep him alive longer, but really it's the breathing that will decide on things for him.
 

Nuts

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Joined
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2,486
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01/2014
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North Carolina
Welcome. This is such an unpredictable and cruel ride, but you have found a place where others understand what you are experiencing.

Our grandchildren (4 to 12) know that grandpa is in a real cool chair, but they don't have a clue of what's coming. As they get curios I suppose that we will answer their questions, but ours are young enough that I can't see burdening them with the future. Certainly a 21 year old can and should know, but I think that you need to consider each child differently based on age and intellect. I think the only thing you can tell the younger ones as he progresses is that he's not going to get better. Once the feeding tube is in that's just how he will eat from now on.

Sometimes I wish I knew what our timeone was, but then most of the time I'm glad that I don't.
 

Tampster

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Joined
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Loved one DX
Diagnosis
03/2014
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Uni
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TEXAS
Thank you everyone! This is very hard, as you all allready know! We find out soon if he can get the feeding tube. We are putting all of his food in a blender.
 

Barbie

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Joined
Dec 29, 2007
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01/2007
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Tampster, all you can do is take one day at a time. I have been pureeing my husband's food for 5 years now. he uses a Trilogy now, but only at night. with the grands, you know them best, but if they are young just respond to questions and let them know granddaddy's body is not working right. if they don't see him all the time, then they will need to know what he is like before a visit so they are not shocked. but any kid who is a teen or older should know the full diagnosis because if they hear the words ALS and look it up on the inter net they will be upset. Overall though, kids handle it better than you would think! But welcome, and we all support you in your caregiving.

Welcome to you too King!
 
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