Suki

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Writing to Dr. Dan
  • Posted Wed 06 Aug 2014 01:52 AM EDT
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Hello,am new here.,
  • Posted Fri 12 Sep 2014 04:17 PM EDT
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Suki, I wanted to make sure you were aware of Team Gleason. http://www.teamgleason.org/ They may have information or services that could help your son. Steve Gleason is a former NFL player who has ALS and has put together an organization that is providing low cost or free communication devices with the help of Microsoft. They have other services and support for people with ALS. It may just be helpful for you all to have others to talk with. There's a military group here in the discussion boards that would link him up with other vets too. I'm glad you guys have taken advantage of the benefits that provide in home care help. Keep making sure you are getting full use of his military benefits and don't ever let the VA screw around with him. I'm sorry that he has ALS, it's an unfair result for serving our country. I wasn't aware that it's considered a military service related disability. That's really interesting to me. Please let your son know that I respect his service to our country and if there's anything I can do to help please let me know. Deborah
  • Posted Tue 05 Aug 2014 11:25 PM EDT
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Thank you, Zuzu, for your support. I did know about Team
Gleason. I used Twitter to communicate with people who have
ALS. Yes ALS is a military related disease, 50% more prevalent
than in the general population. The VA was a great help in
converting my garage space into a living area for him, with
a little urging from my Senator's VA rep. I will look for a
military group here. One of the greatest challenges I have
is that he doesn't like to complain or communicate. He has been
this way his entire life. He fell outside a coffee shop last week,
was brought home in an ambulance and hasn't said a word
about it. He won't accept help or suggestions and fired his
social worker because "He asked too many questions." Thank
you so much for reaching out to me. I currently have no
friends here, would you like to be one?
Hugs, Suki
  • Posted Wed 06 Aug 2014 12:58 AM EDT
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I am the mother/caregiver of a son with ALS. He was SSGT ( RET ) USAF.
ALS is considered a military related disease. Would like to talk .
  • Posted Sun 13 Jul 2014 12:59 AM EDT
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