Hi Chris, It is wonderful to have you in the group! As the mom of a 22 year old with DMD, I want to read about your experience as well as the other "older" gentlemen with DMD! I am glad you all are kicking DMD in the butt!! Welcome, Elizabeth
----- Original Message ---- From: Chris <chriswebb2007@...> To: Duchenne_MD_Support_Group@yahoogroups.com Sent: Tuesday, June 3, 2008 12:46:59 PM Subject: [Duchenne_MD_Support_Group] Introduction
Hello all,
Before I introduce myself to the group, I would like to thank Mark for inviting me to join.
My name is Chris and I am 40 years old. I have DMD and I have been ventilator dependent since January of 1990. I went into a wheelchair at the age of 7 and had a spinal fusion when I was 12.
I have resided in a rehab hospital since August 14, 1990. I have pursued independent living off and for the past 18 years, but have had no luck thus. A lot of it has to do with fear and the rest is because the so-called independent living centers seem to forget that I exist and stop contacting me altogether. However, I cannot really place all of the blame on them. I have never really followed up on things.
I am not sure what else to say about myself, so I will bring this message to an end. I look forward to participating in this
group.
Yes, Mark, I know that I said the same thing about your other group, but never really participated. I going to change that because I realize that I will never get anywhere in life if I sit around, waiting for change to come to me.
Hi Chris, It is wonderful to have you in the group! As the mom of a 22 year old with DMD, I want to read about your experience as well as the other "older"...
Hi Chris, It is wonderful to have you in the group! As the mom of a 22 year old with DMD, I want to read about your experience as well as the other "older"...
Thanks Chris for being part of this group. I so understand your fears of pursuing independence. It's been no easy feat to get where I am today. There have...
Jessica, Those are most certainly the biggest issues that concern me. I should mention that I have worked with 3 separate ILCs, and in my honest opinion, all...
Chris, I think your situation is unacceptable! You need to be at your doctors appointment in the wheelchair, especially if you are being seen at an MDA...
A talented ENT would be ideal for the stoma issues. Chris have you ever discussed a trach site revision? Or whatever its called. Where they do a bit of...
Mark, I saw an ENT here at the hospital I'm in (New England Sinai Hospital and Rehabilitation Center). She didn't really look at my trach site then said to do...
Mark, I've dealt with the hospital's patient advocate before on another issue. I got the impression the she has the hospital's best interest in mind over mine....
Did she specialize in trachea/airway issues? Shouldn't need your chest opened for anything airway related. Mark blog: http://nodakwheeler.blogspot.com/ ... ...
Mark, She was just a regular ENT as far as I know. I found it very strange that she said they would need to open up my chest to take care of my trachea. I...
Stupid people. I still haven't understood why she would think you meant the esophagus rather than realize its the throat. Probably just points out how little...
My name is Steve. I'm 32 years old. I have Duchenne md. I am on a ventilator via trach 24/7 and I also have a g-tube. I'm from Canada and live with my Mum and...
Hi Steve, So nice to meet you. I am Bonnie and have a son Julian who is 26 years old. He has DMD. He lives at home too. He is on NIV through nasal pillows. ...
Welcome to the group Steven and Debbie. I am Nicole and have 4 year old twin boys, Carlo and Anthony. Anthony has DMD. Â Nicole ... From: Stephen King...