~ "I am not dying with ALS, I am living with ALS!!!" ~
I was diagnosed at only 21 years old. I'm confined to my wheelchair, speaking device, feeding tube, trach, & I used to use ventilator at night (very rarely) . I'm a animal lover, enjoy the internet & facebook I've met so many PALS on fb (look me up Heather Shearon Bridges), also like football, reality TV shows, movies & music.
I try to be as positive as I can, enjoy life, laugh, smile everyday and hope for a cure!
On 6/5/06 My peg tube came out on its own, went to the ER. I had it removed by choice, I can eat soft foods, Ensure, & swallow my pills. Glad it's gone!!
On 3/7/07 I decided to have the peg tube put back in... Because I can tell my swallowing is weaker, food going into my lungs which will cause pneumonia, (4 times I've had pneumonia, not fun), getting tired when I eat to the point I'd rather not eat! So it's time for the tube...
I've had the trach since 11/17/04, I've used the vent very rarely. On 3/20/09 I decided to remove the vent from my home...
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other, body thoroughly used up, totally worn out and screaming "WOO HOO what a ride!"