Status
Not open for further replies.

razberri

New member
Joined
Mar 24, 2012
Messages
2
Reason
Loved one DX
Country
Aus
State
WA
City
Ballajura
Hello! I thought I'd join hoping to find out more about this disease and how people cope with it.

My cousin got sick a few years back and, a few years later, finally heard the diagnosis of ALS. She's now bed ridden and not speaking, but can breathe on her own and, most importantly, can still smile.

It's really difficult for me having a cousin with ALS. I want so much to help her, but I hardly know anything about her disease or how she is dealing with it. She's not the type to complain about her own problems. The trick here is that she lives in Poland, I live in Australia. For a while I wondered why she doesn't really respond to me over facebook, etc. I had no idea she was typing with her eyes.....

So I guess I'm here to learn, so that I might find ways to support my cousin somehow. It's difficult not knowing any details, but maybe I'll know what questions to ask...

So hello! And I look forward to meeting you all.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
welcome raspberry sorry to hear about your cousin but hope we can help you learn to cope. I'm using a speech to text program to post this. There are a lot of different ways for us to communicate you just have to learn to adapt.

Al
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
Messages
1,016
Diagnosis
11/2008
Country
US
State
Kansas
City
Emerald
Hello Raz,

Welcome to the family noone wants to be a part of. Ask questions, we all had to start somewhere. You need to see if your cousin is already on here and if not, please tell her about us.

GOD Bless,

Toto
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
Reason
PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
City
country
Welcome Raz, so sorry about your cousin, you will find lots of great info on here and great people also.
 

razberri

New member
Joined
Mar 24, 2012
Messages
2
Reason
Loved one DX
Country
Aus
State
WA
City
Ballajura
Toto, (that was the name of my cousin's dog! haha) my cousin doesn't speak english, so she wouldn't be on here. A shame, because it's inspiring (in a sad way) to see so many other PALS all joining forces and offering support to each other.

Al, my cousin uses sensors on her glasses. She can't speak any more. It will be a shock seeing her again and not being able to talk to her. Last time I saw her she still had limited movement but full speech.

Good to see there's so much technology that can help PALS though!
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Welcome aboard Raz! You'll find a wealth of information here and a good group of caring people.
 
Status
Not open for further replies.
Top