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Welcome to My Personal Page
If you have opened this page, I thank you from the deepest depths of my heart. Because your support and donation, no matter how big or small, will make a difference.
ALS is ridiculous, tragic, heartbreaking, horrible, mind blowing. Sad, unbelievable, hurtful, and stupid, of course. To put it mildly.
I have been living with this stupid ALS for over 13 years. This is the ridiculous stage. I ask, why am I still alive. Why did most of the people I knew with ALS already die. Some in less than 2 years. Some at a young age of 32. So heartbreaking because it sneaks up on you and you can't run away fast enough.
And THERE is NO FREAKING CURE :-( :-( :-(.
Reading this message, it might seem like nothing is wrong. And that I am normal. This is because it doesn't really affect your mind. And this is MIND BLOWING. Also CRUEL.
I am writing this message on my tobii computer. I have to point my eyes to each letter and the infrared lights pick up my eye movements. Something like that.
Stupid ALS has taken away my voice. My hands to write. Not being able to communicate is horrible. And you can't take the tobii computer everywhere. You have to use a letter board. And it can be very challenging.
Yeah, I need help with everything. Help to eat, dress, wash, sit stand, control my wheelchair, turn on my tobii, turn on the TV. Turn off the TV, and much more it is daunting. And takes a toll on anyone and everyone. And most importantly, I can't begin to tell you about all the nuances I have to go through, which involves your poor family and caregivers. You have to applaud them to take on this tough job.
A huge huge headache is funds for caregivers.. How can anyone afford this. It is simply tragic and sad. You have to do a lot of praying.
Sending boatloads of gratitude and love to you,
Lorene, tony and ohana