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Thread: my son is c1-2 quad on vent

  1. #11
    Quote Originally Posted by Scaper1 View Post
    Hi Sandy. I have C1-C2 injury too, and if I had to rely on Dragon alone I'd be homicidal. I use a sip & puff interface called Darci, it allows for both typing and very easy mouse control. So I usually use both systems at once, fixing the Dragon mistakes by sip & puff. I don't use Dragon for the mouse features at all, I only use Darci for that.

    Your son really needs to at least be getting in his chair every day, even if he just stays home. Bed-rest is a quick ticket to respiratory problems at his level. Sometimes the position change can help alleviate all the weird sensations a little. Getting in the sun is also important.

    Good luck!
    Hi Scaper
    I would like more info on the interface and Darci. I did a brief search online for Darci and didn't find any programs like that. Dragon has screwed up his computer a couple of times causing him to lose files....talk about angry...grrrrrrrrrrrrrrrrrrrr!!! He has NEVER gotten in his chair EVERY DAY since rehab!! He has always said there was no purpose in it unless he had somewhere he had to go. He doesn't like being in his chair...says he's not as comfortable as in bed. When he HAS to go out somewhere...as soon as he's home he wants to be put back in bed. I wish he has someone like you that lived closer to encourage him to do more. I am not the least be surprised that he's feeling this depression when all he has to focus on day after day after day is the 4 walls of his room, his computer and TV!. He doesn't have any friends that come to visit just his family's support and we o are with him a lot of the time. We have lots of family dinner type get togethers at his place so he doesn't have to get out.
    Thank you so much for you input!

  2. #12
    Quote Originally Posted by Gunnslinger8 View Post
    I read some of the responses.I would like to speak about the anger.I am C2 C3 and was in ICU for over month.I can tell you from experience that I know what he is going through and fortunately most cannot.I remember the anxiety and total frustration ( going crazy ) that the lack of movement caused.I recall thinking I was on a vibrating bed and I thought why have the setting so high can you turn it down but the nurse said this bed doesn't vibrate.The anger is totally natural it shows he still has fight but only occasionally.If this is all day everyday then talk to professional.I think he should talk with others that have been through this...it helps.This situation he and others ( myself included ) have experienced is the worst torture you can put the human body through.The psychological part is the WORST!
    I would suggest anti depressants...they forced me to take them and they helped.
    I hope the best for you all and tell him he is not alone and if he needs to talk with someone just email me.

    Gunnslinger8

    Who cares if they stare...let them.Put a sign on the chair stating what if this was you...would you want to be "stared" at!
    Thank you Gunnslinger. He has said over and over to me when I talk to him about what another quad has done or is doing ...good or bad...and he just says that "no one understands what it's like to be me" He feels paras or lower quads have no idea what being paralyzed really is! Actually his mood seemed to be a little bit better today...but still got mad about something stupid pretty easily. He has been on zoloft or substitutes since he got in rehab. He's taking 20 mgs a day. They forced him too...to my dismay...but then I had no idea how hard it would be for him.
    I sooo wish he would talk to you...or anyone...but everytime I ask him to chat with someone or email...he says no...he's not a "chatter" or even an emailer....or talker... I would add. If you'd feel up to being rejected...I could give you his email addy ....see what happens...
    Thanks again,
    Sandy

  3. #13
    Quote Originally Posted by nancygail View Post
    Has he been evaluated for Diaphragm pacer?It might give him a little more freedom and give him a goal to strive for.
    No...I think he thought about that at one time and gave up ...I'm not sure why..if it was because he didn't think any insurance would pay for it....?? I know of a young man his level who recently had that done. He has tried breathing on his own for short amounts of time. Got up to an hour or so I think, one day. He was pretty excited about his progress and kept thinking he'd keep improving... But he also had a bad pressure sore around that time and I suggested he not work on his breathing until that wound had healed(ended up having flap surgery) because I am sure that would decrease his oxygen levels and healing levels. But he has never picked it back up again. Have you had the diaphragm surgery?

  4. #14
    I understand the problem of not have a doc that is experienced with a high level quad. It is very frustrating.
    Sigh.

  5. #15
    Quote Originally Posted by Bryans Mom View Post
    Hi Scaper
    I would like more info on the interface and Darci. I did a brief search online for Darci and didn't find any programs like that. Dragon has screwed up his computer a couple of times causing him to lose files....talk about angry...grrrrrrrrrrrrrrrrrrrr!!! He has NEVER gotten in his chair EVERY DAY since rehab!! He has always said there was no purpose in it unless he had somewhere he had to go. He doesn't like being in his chair...says he's not as comfortable as in bed. When he HAS to go out somewhere...as soon as he's home he wants to be put back in bed. I wish he has someone like you that lived closer to encourage him to do more. I am not the least be surprised that he's feeling this depression when all he has to focus on day after day after day is the 4 walls of his room, his computer and TV!. He doesn't have any friends that come to visit just his family's support and we o are with him a lot of the time. We have lots of family dinner type get togethers at his place so he doesn't have to get out.
    Thank you so much for you input!
    Here's the Darci website: http://www.westest.com/darci/ . It's a little box that plugs into any USB port and allows one to use sip & puff instead of the keyboard and mouse. If you email them they're usually very helpful.

    Does your son have a seating specialist? An uncomfortable chair is a big deterrent to getting up.

  6. #16
    sandy, it's cass. i believe we know each other and bryan. i, too, am experriencing anger. pm me or do you still have my e? i talked to bryan on phone once.

  7. #17
    Senior Member
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    Quote Originally Posted by Bryans Mom View Post
    No...I think he thought about that at one time and gave up ...I'm not sure why..if it was because he didn't think any insurance would pay for it....?? I know of a young man his level who recently had that done. He has tried breathing on his own for short amounts of time. Got up to an hour or so I think, one day. He was pretty excited about his progress and kept thinking he'd keep improving... But he also had a bad pressure sore around that time and I suggested he not work on his breathing until that wound had healed(ended up having flap surgery) because I am sure that would decrease his oxygen levels and healing levels. But he has never picked it back up again. Have you had the diaphragm surgery?
    Yes,for me it has been exciting and uplifting.If, he could use a pacer it could free him from the vent.Also,the training to get off the vent would give him a goal to strive for.

  8. #18
    Quote Originally Posted by nancygail View Post
    Yes,for me it has been exciting and uplifting.If, he could use a pacer it could free him from the vent.Also,the training to get off the vent would give him a goal to strive for.
    Did you find insurance that covered it? He only has Medicare/Medicaid. Would one have to go to certain states or wherever to get this done?

  9. #19
    Senior Member
    Join Date
    Jun 2011
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    Mesa, Arizona
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    1,078
    I am at a loss on what to say..you and your family have my condoleances. I know that this must be very very rough. I am hoping I used the right word. If I were you I would get with a benifits specialist and see what benifits are covered and what ones are not. I am not sure how the medical system were you live works. but I would definately ask alot of questions. and I would be asking the doctors alot of questions. write everything down that you want to ask. take it with you and ask ask ask.
    I know for me I was afraid to ask questions I thought I could handle it all on my own. well now 17 yrs latter I am asking a bunch of questions but no answers. it's ok thou. because atleast they are running tests and I am getting the tests results. it's taking forever but atleast it's getting done. The other thing that has helped me alot was I got a therapist. gives me someone to talk to.
    I hope this helps.

  10. #20
    spam

    Take it as a compliment, some jerk felt your thread was popular enough to post his nonsense in!

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