ALS @ Lou Gehrig's disease

Recently, there's this ice bucket challenge going viral ... where people take up the ice bucket challenge, donate and nominate other persons to take up the challenge.
I've seen other people watching the videos without realising what is it all about until I took the time to watch one http://youtu.be/h07OT8p8Oik

Update : another video to raise awareness of ALS by Malaysian Dick Chua whose grandpa also has ALS. In the video, he tells about his grandpa journey. 
http://youtu.be/hKwA2XYOPng

and just that one reminds me that I have 'something' that need to be done
1st hand encounter : 

I've seen it ... month by month, year by year, stages by stages, every deteoriation and the struggles of the patient and family members, every single attempt & effort we made to make it better but to no avail ... 

and it scare the hell out of me now that knowing I'm at higher risk and that I'm approaching that age. 

Honestly, I really didn't want to worry pointlessly and rob myself of living the moment, but not acknowledging it and not giving it a thought is not going to solve the problem if it comes ...  

Which make me want to live my life to the fullest every single day, love my dearest ones unconditionally every single moment, 

2nd hand encounter : Tuesday with Morrie
I've always regretted I read this book too late ... way too late. I could have done many many things for my mother ... I could have. I would have understand her more and ease her journey ... I would have
but being the stupid me at those period of time, I did NOTHING...absolutely NOTHING.

Enough said, to know more about ALS a.k.a Lou Gehrig's disease, can go to 

http://www.alsa.org

http://www.als.net

last time, diagnosis given was not conclusive and we were told there's nothing can be done, we can only prolong/wait

how i wished I knew what I can do. nobody knows what is happening, no doctors can diagnose as the symptoms are similar to various other conditions and ALS is not common / known in this part of the world and at that point of time.

like a ticking time bomb, those years of my life, we slowly loss my mother to this disease. we saw her every struggle, we saw her every determination and very sorry, mi
we didn't do anything ...nothing to make you better.

Symptoms of ALS : 
source : http://www.alsa.org/about-als/symptoms.html

• muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, 
  swallowing or breathing
• twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
• impairment of the use of the arms and legs
• "thick speech" and difficulty in projecting the voice
• in more advanced stages, shortness of breath, difficulty in breathing and swallowing

my mother's gradual case was just as the symptoms say and I feel her frustrations when she's not able to convey what she wanted us to know (not able via speech, not able via write and not able via gesture)

When she started to have difficulties eating, how did we not know what may come and her struggles.

During then, I use to feel very tired physically and emotionally as our lives revolve around my mother. But how did I not know how she would have felt 100x more tired physically and emotionally. How can I not know?????

Even until the very end, when my mother had difficulty breathing and rushed to emergency, 
for that few days, my mother didn't got better.
@ hospital, doctors come to agreement that if my mother leaves, there will not be any attempt to revive her. 
No matter how much begging we do, it will not bring her back. 

It took me alot of courage to write this but I guess if something really happen to me, I would have appreciate that I did this. And I definately want people to know

because my mother didn't had a chance to let us know alot alot of things she wanted to let her family knows. 

I want to say

if this really happen to me, do not worry about me ... 

read my letter to you 

and if anything really happen and I do not have a chance to say it, do let me go, do not let me be a burden. 

Update : I'm very grateful to all the people who has helped us and prayed with us throughout our journey with my mother ALS. A million thanks and may you all be blessed always.