my name is Kyle VanderHoek, I have Duschene MD and am 22 years old.
I am using night time ventilation with a Bi-Pap machine when I feel
like it. I am extremely scared of what will become of my life when I
need to use a Tracheostomy with full time ventilation! I am living
with my parents who are divored now, two weeks at my dad's two weeks
at my mom's. I am worried about moving back and forth. There are so
many questions and concerns that I don't know where to start.
Is is necessary to live in a nursing home? Is full time nursing
staff needed? How do you pay for all this stuff? How do you bath?
Can you stay in your wheelchair all day or are you in bed all the
time? Will I be able to talk and eat normally? Do you go to
resturants, movies, concerts, outdoor activities?
Those are just a few of my concerns, I would really appreciate any
input that might reduce my fears. Thanks so much,
Kyle VanderHoek
kvhoek(AT)oz.net
http://www.oz.net/~kvhoek/