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Amanda529

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Joined
Nov 6, 2007
Messages
20
Reason
Loved one DX
Country
US
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OH
City
Berlin Heights
This disease sucks because there is no cure for it. My dad was diagnosed in August since then it is breaking my heart to watch my father go down hill and there is not nothing I can do about it. I hate the fact that my dad is slowly dying in front of my face each day. I am going to really miss him when he dies because i am daddies girl and i am just like him! Every day it gets harder and harder to understand him but i am grateful he can still communicate with us. I need advice from others on how you deal with this. Thanks in advance for your help! May God bless each and everyone of you!
 

anne

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Jun 22, 2006
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157
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CA
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ontario
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unionville
Welcome to the forum. Everyone is very helpfull and supportive. I am really sorry about your dad. I remember clearly when my mom was diagnosed June 2006. Our entire world came crashing down on us. Shortly after her diagnosis she lost her speach. However, she managed to communicate to us by writing. Thankfully my mom's mobility and fine motor skills remained excellent and was able to write messages up until a few hours before she passed away. This illness is very cruel. There will be many stages that you will go threw, denial, anger, and lots of frustration. Take one day at a time. Deal with the situation as it occurs. Remember to treasure every moment that you are with your dad. That is the only thing you can do. If you have questions there is always someone on this forum that will have an answer for you. Take care. Anne
 

brooksea

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Amanda,

Very sorry your father has ALS. I can't really add much more to what anne so nicely wrote, except hang in there. You will find a way to deal with this even though it will be difficult. You are a wonderful daughter to care so much. Feel free to ask any questions you may have, I'm sure someone will be able to answer.
 

CindyM

Moderator emeritus
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Sep 17, 2006
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3,543
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Learn about ALS
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US
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New England
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Anytown
Hi Amanda and welcome to the forum. I am sorry to hear about your dad. It is an awful thing to face. We will help in any way we can, though. Write any time and ask about anything that is on your mind. Cindy
 

Gina

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Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
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ONTARIO
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CAMBRIDGE
Hi amanda!I remember as well when my husband was diagnosed with als my world also came crashing down.I have a daughter as well and i know how hard it is for her and you to accept the diagnosis and watch as yours and her daddy decline.She was always daddys little girl even though now she is married with children of her own.ALS is such a cruel disease and makes the caretakers and familly feel so helpless.It is so obvious how much you love him.You are so right this disease does suck!Everday though that he lives is one day closer to a cure....god bless you and take care of yourself!hugs for you xoxoxo Gina
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
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PALS
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Uni
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Texas
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Tomball
Amanda, just read your post, and it tore my heart inside out. I know the pain you are going through right now. I experienced the worst pain ever when my son (38) was diagnosed'ed with this horrific disease on 3-29-07. I know the emptiness and helplessness that is being felt. No joy ever again. Your life changes within seconds, you wake up to the worst nightmare, when als strikes your loved one! You know there is no cure, and you keep asking yourself why, why, why this? Why him/her? Your world dies, I know mine did! I haven't been the same, and God bless you, and your sweet Dad. Keep us posted, Amanda. Live your lofe to the fullest with your dad, and show him love, lots of it, just set the pity aside. Pals do not like pity, I have learned that from my son. God bless!

Irma
 

Icanmanz

Senior member
Joined
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947
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PALS
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Uni
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Texas
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Tomball
Sorry Amanda, my son was diagnosed'ed on 3-29-06, not 07. My mistake, sorry!
 

Amanda529

Member
Joined
Nov 6, 2007
Messages
20
Reason
Loved one DX
Country
US
State
OH
City
Berlin Heights
First off thanks for all the kind words from everyone! This is a great form and i am happy i found it. My dad has the Bulbar form of ALS. His doctor has not given us any clue of how much longer he has. The more i read on here it seems like most people die within a year. I know everyone's time is different. I just wish i knew exactly how much longer we have with him. I feel so lost, hopeless, i can't stay focused at work because i worry about my dad, i cry almost every day because i don't want to lose my dad, and i am so stressed. I remain happy around my dad but when i leave him i just cry because it breaks my heart to see how this disease has affected him. I don't know how i am going to survive when my dad is not here. It is good to know there is Great people on this form willing to help people who know how you feel and know what you are going through. That is what i need someone to talk to who knows what i am going through. God Bless you!
 

cheryilyn

Active member
Joined
May 22, 2007
Messages
62
Reason
PALS
Diagnosis
Sept. 06
Country
US
State
Oregon
City
Salem
Amanda,
just wanted to let you know that i have bulbar onset ALS and just passed the 1 year mark since diagnosis. and i have plans to be around a few more. part of what determines how long a person has is attitude and also what medical interventions a person wants, like bi pap, feeding tube and vent. I have opted for anything that will keep me around longer, some pals want none. It is a very personal decision. enjoy whatevertime you have with him and make more good memories.
 

Amanda529

Member
Joined
Nov 6, 2007
Messages
20
Reason
Loved one DX
Country
US
State
OH
City
Berlin Heights
Thanks Cheryl! Since i am new to this disease i have no clue what a bi pap is or vent. I think i know what vent is but not for sure. My dad has said he is going to fight this disease for me, my sister, and my nephew. Thanks!
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Amanda....I can fully understand how you feel. My mom was diagnosed with motoroneuron disease with bulbar symptoms. She unfortunately passed away 15 months after diagnosis but had symptoms since December 2004. She was 76 when she passed away. I have to say I tried to remain strong for her. I put on a really good show, but I cried every day from the day she was diagnosed. I would cry in the car, in the shower and in bed. There were a few times when the tears flowed while I was in front of her and she would go in a complete panic to see me upset. My brother had moved back home to be with her. We cared for our mother at home without outside help. It was difficult but God gave us the strength to take care of her until her last 5 days where she was then admitted to the ICU. Now that she has been gone for the passed 6 1/2 weeks I am still crying. My mom was a fighter, for us....myself and my brother and her grandchildren. My mother was our life and it is the hardest thing to see your loved one suffer. I know now that my mom is no longer suffering.

You have to educate yourself on the disease and take it one day at a time. I continiously searched while she was ill. I searched for the hopes of finding a different diagnosis for her. I searched and asked questions on the forum so I could be educated when we were faced with the next situation.

Ask questions....we are all here to help you threw this terrible illness...and also please remember everyone progresses differently and at a different rate. I have a sister in law that has had limb onset and she is in her 6th year. She is just now starting to show signs of difficulty in her arms.

Take one day at a time. God Bless. Anne
 

califsand

Distinguished member
Joined
Sep 21, 2007
Messages
237
Diagnosis
01/2004
Country
US
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ca
City
sant barbara
Hi, my dad was diagnosed in 2004 and I went through what you are. I cried every day, I couldn't eat, started to choke on my food (probably in sympathy to what he was going through) and it really messed me up. I too didn't cry in front of him and that made us closer, he felt safest with me for not putting my feelings on him... once in a while we would cry together but that was more to share what HE was feeling, if you know what I mean. Anyways, I didn't know how I was going to get through it, seriously I worried about my sanity. There was no cure for my feelings except for time. I got my emotions under control after awhile and just allowed myself to enjoy time with him. I worked up to seeing him daily and as hard as it has been the past few years, I know that I will have NO regrets and that I have had a great gift in the bond he and I have. I'm a serious daddy's little girl, always have been, always will be and I do know what you are going through!

Hang in there and come back here whenever you need to vent. It's a safe place and no matter how ugly or painful your feelings are, there are people here who know EXACTLY how you feel and they will NOT judge you for anything you say.

Sandy :)
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
Reason
Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Welcome Amanda, and so sorry you have to be here. My mother has bulbar onset ALS and was diagnosed early this year. I, like many others here, know the pain you're feeling. I did a lot of praying and reading books about handling life when bad things happen. The biggest thing that has kept me going is my faith in God. I believe He is in control of this situation. One thing I've kept on my mind and in my heart has been that I must trust God - have faith in His will and that, for me at least, fear cannot live in the presence of faith. I cannot both fear and have faith. So, when those feelings of fear come along, I choose to push them aside and think faithful things, like that God is in control. This helps me.

I'm glad I read your thread as hearing both Anne and Sandy say that they did not cry in front of their PALs. I have recently been wrestling with that very subject as I have not cried in my mom's presence about what she's going thru. Even today when I was with my mom on my lunch hour (and she is doing very poorly), I wondered if I should cry - if I should tell her how much I'm going to miss her and all. I don't want to upset her or burden her with my emotions. I only want to be supportive, positive, cheerful and helpful. I tell her over and over I love her and when it's time for me to leave, I hug and kiss her several times as I know each time may be the last. Then, after I'm gone, like right now, I cry.
I'm glad to know others have not cried with their PALs. I just didn't know if I was abnormal or what.

Anyway, Amanda, you'll find great comfort here. And, as you signed off, God Bless You TOO. He can really be your strength in this - I know He wants to be.

God bless,
Nicki
 

Rachel

Active member
Joined
Oct 14, 2007
Messages
32
Reason
Lost a loved one
Country
UK
State
Essex
City
Colchester
Hi Amanda

I to am relatively new to this forum and have found comfort in talking to people who know what you are going through.

I would agree with Anne, take each day at a time and cherish those days. My mum was diagnosed with bulbar onset in Jan 2007 after displaying symptoms (slurred speech, choking etc) since 2004. Sadly she passed away on 12th November so I am in turmoil of emotions at the moment. Anger at the cruelness of the disease, despair at losing my mum and trying to put on a brave face for those around me, especially my dad who is in his own dark place.

I too tried hard not to cry in front of my mum, mainly because I didn't want to make her cry, which also carried its on risk of choking or difficulty breathing as her nose would swell. I spent each day of the last 5 weeks she was in the Hospice with her, my dad & my brother, and those days will never leave me. Tell him you love him, hold him, hug him, do anything you can for him (I know you will anyway).

Communication is not always easy, my mum lost her speech in June and used a Lightwriter which became her voice. My mum decided early on that she didn't want to be vented or resucitated and so we knew the end would be quite quick once her lungs started to fail. But she was so tired of the disease which she had fought so bravely we respected ber decision. Her mind was the only thing the disease didn't take from her.

I know it's hard, I too wanted to know how long she had and no-one would tell me. Each case is different and mum went through many plateaus where she didn't deteriorate at all for a few weeks and then the next morning the difference would be immense.

Keep asking questions, this forum has a wealth of knowledge and advice to share.

My thoughts are with you.
 
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