what do u think

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clare t

Member
Joined
Sep 28, 2009
Messages
29
Reason
Loved one DX
Country
uk
State
england
:xmy uncle was dig 3 months ago but i am worried as he hasnt read anything about als the nurse visit him leave him booklets and he hasnt even open them he leaf leg drags his words are sluring and he says his arms are dead but he doesnt want to know anything about the desease as i think if he faces up to it he will go down hill fast but all he doing is drinking everyday i just wonder if thats a good thing he doesnt know what the future holds for him but if he did face up to it perhaps we as a family could do loads together before this desease takes over i feel like we are just sitting here waiting for it to take over and it really is hurting so much thats y i came on here as u cant spk to him we have had some really bad luck in our family his sister dying in her sleep his other sister dying last april of cancer his dad died of heart trouble and his mum has dementia and he has just been dig with this our family is braking up and we need to be strong for this desaes as well as my uncle. i want my uncle to eat good do abit of swiming while he can but u cant make him do it thanks for reading my thread and sorry if it doesnt make sense i have so many questions i want to ask but its so hard :x
 

K-Town

Active member
Joined
Jun 8, 2008
Messages
32
Reason
CALS
Diagnosis
06/2008
Country
CA
State
ontario
It's all pretty scary stuff. Your uncle is in denial. You can't push. Talk about things with your family. Stay as close as you can, draw strength from one another. Read this site, it's full off useful info. Pass the link onto ALL family members. It will help.
There is nothing easy on the ALS road for anyone. Family support will help, knowlege will help even more.
Relax. Breathe. You can't control what's happening, but you can control how YOU deal with it.
So sorry you found us. But glad you did, we are a good group of trustworthy people.
This is a brutal disease, we all know it, live it, and deal somehow with it. You will too.
Group forum hug now :)
 

Gelthling

Distinguished member
Joined
Apr 7, 2009
Messages
109
Reason
Loved one DX
Diagnosis
0/2009
Country
AUS
State
NSW
My mum was diagnosed back in March this year - and she has still not read one thing about this disease. All she knows is what either the MND clinic has discussed or the Speech Pathologist - and even then they don't go into details as they know she is in denial. She copes with what she is going through that day..one day at a time. You cannot force people to confront something they are not ready to confront. I have looked up all I can on this disease so I am informed and can help my mum make the proper decisions, and bring up bits as they are needed to make theses decisions. I think if she knew completely all she was going to face, she would just breakdown fully. There are some people that find out everything and accept their life and live for what they have and there are others who hide, turn to drink or find other ways to cope. As this disease affects people differently,so are the ways everyone copes. Just be there to support when needed! Sorry you have to be here to try to deal with this!
 

Anastasia

Active member
Joined
Sep 4, 2009
Messages
84
Diagnosis
04/2008
Country
AUS
State
South Australia
Denial, depression, devastation about all the things that have already faced your family, it all adds up.
Sounds like you will need some outside intervention with the drinking. Re your loved one not reading any info, I think that is probably fairly typical with some people, not that I m an expert but its a huge part of the denial and from what Ive seen so far, no one can push that on anyone.
Havent solved anything for you I know, but hope just sharing has helped .
Take care of you as well.
 

clare t

Member
Joined
Sep 28, 2009
Messages
29
Reason
Loved one DX
Country
uk
State
england
thanks u for ur replys i dont know what to say even though i have so much to let out godbless u all
 

Gelthling

Distinguished member
Joined
Apr 7, 2009
Messages
109
Reason
Loved one DX
Diagnosis
0/2009
Country
AUS
State
NSW
Clare - It has taken me 7 months to be able to speak to people about mums MND without bubbling like a child - it takes time, its the hardest thing I have ever had to face. You have come to the right place that as you need information, just look up the forums and you will find some answers. And support here is wonderful - all these people understand what you are going through!
 

tdamess

Very helpful member
Joined
Jul 29, 2009
Messages
1,287
Reason
Loved one DX
Diagnosis
07/2009
Country
US
State
ma.
all i can say is everyone has to deal with it their own way and sometimes its better not to know what is coming as we are he knows but not all and the family is preparing for what has to be done for him and now i am also thinking let him live as happy as he can be
 

maryam_rastkar

Active member
Joined
Sep 24, 2009
Messages
43
Reason
Loved one DX
Diagnosis
09/2006
Country
IRI
State
Fars
hi clare
sorry to hear about your uncle
my father is diagnosed too
at first he was interested in texts about ALS
but after reading some, he hates even to hear about it
it must be a really shocking and devastating for them
so denial is typical
 
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