As the white matter slowly deteriorates from the brain, things can be quite unbearable for those waiting to die. Death for people with Leukodystophy can be anywhere between 5-20 or even 30 years depending on the age of the person when diagnosed. My personal experience with this disease has been a hard road to survive. Even though I am still able to work a part time job I still struggle to make it through the day. When I first started having problems I could push myself through the day with the help of medication to control the epileptic part of this disease. In July of 2012 I had a procedure doe to better improve my quality of life VNS (Vagus Nerve Stimulation).
This is like a pacemaker for the brain that sends electrical stimulation to help control seizures. Even though my seizures have been dramatically reduced this still does not stop the progression of this disease. Now that I am almost 40 I find that I have days that I can't move, talk, walk or even see clearly. Another thing I have started to deal with is strange mood swings and behaviors. Some if not all of these things are a part of the progression of Leukodystrophy. One thing I know is that I cherish the good days I have but also know that things could go bad in a matter of seconds where I will lose total control of my body and have to have a care taker to help me along while I painfully wait to die. Anything can happen but I try to get around the hurtles put in front of me even though tomorrow could be my last day.
