A letter from my mom

So many people are unaware of what ALS is and how destructive this disease can be.  I was one of those “ignorant” people until I was diagnosed with it in 2010.  This invasive and deadly disease has sent my life, and my family’s, in a whirl spin.  Its catastrophic  journey has taken control of my body muscles thus robbing me of my mobility and left me totally dependent on my spouse for my care.  Simple tasks like holding a spoon, brushing my teeth and getting dressed are now impossible to do.  This disease didn’t stopped there.  It attacked my facial muscles, my respiratory muscles and swallowing muscles.  Now my speech is impaired and my lungs can no longer perform on their own without the help of a bi-pap machine.  I receive my daily nourishment through a feeding tube connected to my stomach.

     Once ALS takes over your body, the only control you have left is your mind and spirit.  You, and only you, can make the choice of how you want to live your final months or years.  Do you choose to live in anger and negativity or do you take hold of what’s left of your life and make every minute count?  I chose the latter and found it a hard choice to make, one that may change along the way especially when my health deteriorates to the point that I no longer have a quality of life.  Even today, it is incredibly difficult trying to stay on top, to think positively and to live my life as best I can.  Every day, I need to convince myself that my life has value and is worth living considering the condition I’m in. I tell you, it is not an easy task but, until now,  I have managed to keep afloat with the love, help, support. and encouragement of my spouse, my children, my family and friends.  The ALS Society has also been a tremendous support by providing vital information and access to costly equipments like cough assist machine ($9000), bi-pap machine ($7000), etc. The society’s main objectives are raising awareness and contributing to ALS research towards finding a cure.
This dreadful disease HAS to be stopped and the only way to do it is by finding a cure.  Research is costly but think of all the lives that could be saved.  Think, its next victim could be your spouse, your child, a family member or a dear friend.

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