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Reply | Forward Message #191 of 1571 |
Re: [Duchenne_MD_Support_Group] Introduction

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.

Peace,

Chris




Tue Jun 3, 2008 6:00 pm

praytostaysane
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Message #191 of 1571 |
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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"...
ELIZABETH Hoehne
praytostaysane
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Jun 3, 2008
6:00 pm

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"...
ELIZABETH Hoehne
praytostaysane
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Jun 3, 2008
6:00 pm

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...
Mark Boatman
nodakwheeler
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Jun 5, 2008
5:45 am

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 Webb
unforgivingb...
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Jun 5, 2008
10:49 pm

There must be a way. That is ridiculious that they wont take you in a wheelchair. That is so unfair! I wish I knew what to do about that. To:...
Ruby Cullet
rubycullet
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Jun 8, 2008
12:25 am

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...
Adele
navymom2josh
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Jun 9, 2008
3:35 pm

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 Boatman
nodakwheeler
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Jun 5, 2008
11:16 pm

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...
Chris
unforgivingb...
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Jun 6, 2008
1:56 am

What about getting a hold of the patient advocate for your hospital? Mark blog: http://nodakwheeler.blogspot.com/ ... From: Chris Webb...
Mark Boatman
nodakwheeler
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Jun 5, 2008
11:21 pm

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....
Chris
unforgivingb...
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Jun 6, 2008
2:01 am

Did she specialize in trachea/airway issues? Shouldn't need your chest opened for anything airway related. Mark blog: http://nodakwheeler.blogspot.com/ ... ...
Mark Boatman
nodakwheeler
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Jun 6, 2008
2:15 am

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...
Chris Webb
unforgivingb...
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Jun 6, 2008
5:37 pm

This hospital really sounds like an awful place that holds itself above it's patients. To: Duchenne_MD_Support_Group@...:...
Ruby Cullet
rubycullet
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Jun 8, 2008
4:04 am

They need to get you a 2nd opinion from a more experienced ENT. I would think the Boston area would have plenty of good ones...Mark blog:...
Mark Boatman
nodakwheeler
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Jun 6, 2008
6:13 pm

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...
Terri
imblueangel
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Jun 8, 2008
5:24 pm

That is frightening to allow someone so ignorant to have that type of occupation. To: Duchenne_MD_Support_Group@...: momdmd@...:...
Ruby Cullet
rubycullet
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Jun 9, 2008
3:05 pm

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...
Stephen King
stever_sking
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Apr 24, 2009
11:27 pm

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. ...
Bonnie Dombrowski
dombrowfam
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Apr 25, 2009
5:17 am

Welcome ... From: Stephen King <sking789@...> Subject: [Duchenne_MD_Support_Group] Introduction To: Duchenne_MD_Support_Group@yahoogroups.com Date:...
Nicole Lichten
nmphb
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Apr 25, 2009
3:37 pm

Welcome to the group Steven and Debbie. I am Nicole and have 4 year old twin boys, Carlo and Anthony. Anthony has DMD.   Nicole ... From: Stephen King...
Nicole Lichten
nmphb
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Apr 25, 2009
3:39 pm

Welcome to the group. I am Audrey, 27 married to Peter who will be 33 Apr 30 and has DMD. To: Duchenne_MD_Support_Group@yahoogroups.com From:...
Ruby Cullet
rubycullet
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Apr 28, 2009
2:05 am
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