Re: New to group

Jeff Gray (nirusers(AT)ptdprolog.net)
Mon, 5 May 1997 18:41:44 -0400

>My name is Kyle VanderHoek. I am 22 have Duchenne myself and am
>excited to hear you dont have a trach. Right now I am showing signs
>of needing some type of breathing help. How well does your
>mouthpiece work? I have many more question's I could ask, if you
>dont mind? let me know,
>
>Thanks
>
>Kyle VanderHoek
>
Kyle,

The reason I don't have a trach is because an occupational
therapist at an MDA clinic noticed I was complaining of morning headaches.
She told me this was a sign of oxygen depravation and recommend I see a
respiratory specialist. Unfortunately my clinic doctor was the type who
wouldn't discuss or deal with ventilators. The respiratory specialist set
me up with overnight ventilation. Gradually I began using the ventilator a
couple hours a day. Eventually as my diapham muscle weakened I began to
need the respirator more and more until I needed it full time. This
happened over a couple year period. I've found that a nose piede is far
better to use overnight than a lip seal. If you want to avoid a trach you
must have a doctor who will discuss the use of ventilators, and you must
begin using it as soon as you begin having respiratory difficulty. Don't
wait untl it becomes an emergency situation. A trach can be avoided. If you
have more questions for me please ask.

Jeff Gray