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Darlenne

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Country
BRA
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I think I just need to talk maybe?

...Difficulty in swallowing and speech were the first signals that something wasn't right...
My beautiful mom was diagnosed with ALS on Jan 2013...
It was devastating...
I look after her on my own 24/7 and it breaks my heart to see her so weak, skinny and depressed...I feel helpless and am emotionally destroyed...
About 10 years ago she had a heart surgery.. and I remember how awful it was for me as a teenager seeing my mother suffering the way she was.. And I never, ever thought she'd suffer that way ever again.. But I was wrong .. ALS is a horrible disease worse than a hundred heart attacks and I hate it with everything I have...
She was always a very strong and brave woman that looked after everyone and everything.. She has the most amazing personality ... The most beautiful heart and soul...
and...I can't hear her beautiful voice anymore...



(sorry about my mistakes, English isn't my first language)
 

Janie H

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Joined
Jun 23, 2013
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South Carolina
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Rock Hill
You are in my prayers, I haven't lost my voice yet but it is coming.
 

TGB1

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Darlenne - I am so sorry about your mom. My mom was diagnosed just the month before your mother and she also has bulbar onset als. My mom is still strong and walking around, but she has a feeding tube and she cannot speak anymore. All I have heard are grunts and moans for several months now. It is heartbreaking. I share caregiving duties with my niece, sil and brothers. I can't imagine doing it on my own. I wish you strength. I can only take things one day at a time. Take care, Trina
 

Friend of FA10

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Fl
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Miami
I am so sorry to read that. I am not yet educated about the ALS, so I cannot give any type of opinion or medical advice, but I can offer you some moral support and wisdom. I know this must be a very difficult time for your family, but now is the time to band together, Try your best to make the best choices with a clear mind, and do not be afraid to use this forum as a crutch. Good luck you, and I am here if you ever want to talk. Take care, James.
 

affected

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05/2013
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lala land
So sorry about your mom Darlenne, my husband is bulbar onset, diagnosed May 2013.

He can eat a little puree, but is nearly completely peg dependant, he can speak but I can only understand maybe 15-20%, and without a context first I'm totally lost.

His hands and arms are nearly gone, and he can walk very short distances with a walker and someone assisting but that's it for his mobility.

I so know the heart break, it is the most cruel thing I've ever witnessed, but somehow we do it one day at a time xxx
 

Barbie

Extremely helpful member
Joined
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01/2007
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Darlene, you will get a lot of emotional support here, and much good practical advise. Hang in there girl--you are doing good and your mom appreciates you.

please visit us anytime.
 

Darlenne

Member
Joined
Dec 20, 2013
Messages
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Reason
Loved one DX
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BRA
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SAO
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SP
Re: My mom has ALS

Thank you Janie H..
You are on my prayers too...
Stay Strong!
 

Darlenne

Member
Joined
Dec 20, 2013
Messages
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Reason
Loved one DX
Country
BRA
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SP
Hi Trina,
I'm sorry about your mother.
My mom also has a feeding tube..
She has been hospitalised twice with pneumonia.. Needs 02 to sleep but refuses to use BIPAP .. She's getting a pneumonia vaccine this week..
I wish I had someone to help me looking after her.. It would be good for both of us, but unfortunately my relatives are always busy.. :( it's a real nightmare but mom and I are coping ok... Her left side is almost gone.. But she still writing down ... I'm glad you have someone to help, it's very important... Stay strong and thank you!
 

Darlenne

Member
Joined
Dec 20, 2013
Messages
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Loved one DX
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SP
Thank you Barbie!
It's good to know I can share my sorrows with ppl that are going through a similar situation..
 

Darlenne

Member
Joined
Dec 20, 2013
Messages
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Loved one DX
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BRA
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SP
Thank you Tillie,

This disease is really unfair :( ...I cry every single day trying to find some explanation for all this..

I'm so sorry for your husband...

I wish you strength
Xxx
 
Joined
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Messages
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KS
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Kansas City
Darlene, I just joined this forum an hour or so ago. My dad was diagnosed in August, 2013. We could not figure out what was wrong with him because his speech was slurred. Many doctors appointments and tests later we finally learn it is ALS. It seems as though as soon as he was diagnosed things have started to decline quickly. Almost to the point that we're having a hard time keeping up with what to expect next. Just since August he can not talk, does not have an appetite and even if he did he can not eat. He can barely walk, stumbles, falls a lot and his breathing is at 46% and he's getting a feeding tube Friday. He's getting the bipap machine soon. He's down to 117 lbs. He'll be 77 soon. He told me that he is really tired and he believes the end is near. Wonder if he's right? That question has haunted me all day and has me in tears!
 

mrvaughan

Distinguished member
Joined
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Messages
101
Diagnosis
05/2000
Country
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MI
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Grand Rapids
Hello Darlene,
You and the others that have responded to you are all very strong people. You have not put your heads down and curled up in a corner. You are fighting a terrible disease, one that is hard to keep up with and hard to watch. Right when you think the worse that could happen has happened, then you turn around and something else even more horrible to watch or do or have to make a decision on happens. Your mother is lucky to have a strong loving daughter there for her. I hope you both have a blessed and peaceful New Year.
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
Darlene- I take care of my husband by myself also and know what a hard road that is. My heart goes out to you. This is a very heartbreaking disease not only for the patient but the caregiver as well. As someone responded - we as caretakers are strong people. We have to be to get though this nightmare. Watching your love you go through this takes a lot of strength. I can't begin to tell you how often I ask for strength just to get thru the day. Your Mother is lucky to have you. It's ok to cry, get angry, scream whatever. We are all here for you. This forum has been such a comfort for me and I hope for you as well.
 

Darlenne

Member
Joined
Dec 20, 2013
Messages
14
Reason
Loved one DX
Country
BRA
State
SAO
City
SP
I hope you all had a peaceful New Year ♥

It's a very very sad disease... Everything happens so fast and so cruel..
Mom is 60yo and we had so much planned.. Now she seems a lot weaker, her O2 levels are very low( she refuses to use Bipap), she can't barely stand up , WE fall a lot, twice just last week while taking her to the bathroom, I am really concerned about it and I fear she can injure herself even more.. I hope and I think that my family has finally started to understand the seriousness about her condition and hopefully we will be having someone to help caring for her..




Thank you all so much,
And Keep being strong!
________
Love, Dar X
 
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