Announcement

Collapse
No announcement yet.

my son is c1-2 quad on vent

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    my son is c1-2 quad on vent

    He is in bed nearly all the time since last Dec. He seems to be experiencing a lot of depression lately. He has been on Paroxetine since his accident 7 yrs ago. He says he hates being around people...staring at him..etc. So he doesn't want to get out. Lately he seems to be having problems remembering things and has said he feels like his "imaginary right arm" and sometimes leg..feel "numb". Remember..he is totally paralyzed from the neck down..no feeling. He has Dragon Naturally Speaking program that he uses to work on stuff on the computer but gets EXTREMELY angry with his computer when it doesn't respond the way he wants to. I mean yelling, cussing....making his vent beep..I guess cuz he's not breathing right cuz he's yelling so much. He is 35. Here's my concern..I wonder...worry that maybe when he's been getting so angry..that maybe he has possibly done some damage ...like to his brain..like a TIA or stroke or something?? Wondering if anyone else has had any of these experiences like he has or any suggestions..?
    Thanks,
    Sandy

    #2
    I don't have many answers for you, only support. Let him know that he is not the only one who wants to choke the Dragon sometimes. Actually almost daily. I am a C-4, and every time my voice changes a little it doesn't understand me either. I am sure it is even worse for him. I'm sure it is also hard for you to watch. Know that you are both not alone.
    www.symbolofstrength.com

    Comment


      #3
      Hi Sandy,
      I'm really sorry for the pain both of you are feeling. When was the last time your son saw his primary care physician for a good old fashioned physical exam with blood chemistry, EKG, discussion about how his medications are working, etc. It may be that an adjust to his Paroxetine prescription is needed or possibly he needs to try one of the other SSRI antidepressants or an add on drug for depression.

      As for yourself, you might want to apply for access to the Caregivers private forum. Send a private message to Obieone, a member and moderator who can help you access this forum. There are some good people there who are coping with some difficult situations in their lives.

      NL (GJ's wife and caregiver)
      Last edited by gjnl; 27 Aug 2011, 3:59 PM.

      Comment


        #4
        My husband is a C3 complete and uses a vent at night or if he gets tired.
        I understand your puzzlement about the imaginary ams and legs, but it is a very real thing for reasons someone else here will be able to explain.
        My husband often feels he is sitting on an extra pair of legs that are tangled up and is trying to straighten out.
        He also gets a lot of burning like hot barbed wire on his wrists.
        Unfortunately he had a hard time catching on the Dragon and never really used a computer much before his injury in 2008. He was more of a mechanical fixer and now gets frustrated watching me try to fix things.
        We do get out when we can.
        Sorry I have no suggestions. Only that people do understand the "extra" arms and legs.

        Comment


          #5
          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!
          Last edited by Scaper1; 27 Aug 2011, 8:18 PM.

          Comment


            #6
            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!
            Last edited by Gunnslinger8; 28 Aug 2011, 10:04 PM.

            Comment


              #7
              Has he been evaluated for Diaphragm pacer?It might give him a little more freedom and give him a goal to strive for.

              Comment


                #8
                Originally posted by Peders View Post
                I don't have many answers for you, only support. Let him know that he is not the only one who wants to choke the Dragon sometimes. Actually almost daily. I am a C-4, and every time my voice changes a little it doesn't understand me either. I am sure it is even worse for him. I'm sure it is also hard for you to watch. Know that you are both not alone.
                THank you Peders, I see you do understand and yes...very hard to watch. There are sooooo few things that he can do independently and this one thing seems to bring some independence yet causes such GREAT frustration and anger!

                Comment


                  #9
                  Originally posted by gjnl View Post
                  Hi Sandy,
                  I'm really sorry for the pain both of you are feeling. When was the last time your son saw his primary care physician for a good old fashioned physical exam with blood chemistry, EKG, discussion about how his medications are working, etc. It may be that an adjust to his Paroxetine prescription is needed or possibly he needs to try one of the other SSRI antidepressants or an add on drug for depression.

                  As for yourself, you might want to apply for access to the Caregivers private forum. Send a private message to Obieone, a member and moderator who can help you access this forum. There are some good people there who are coping with some difficult situations in their lives.

                  NL (GJ's wife and caregiver)
                  Thank you NL, He has not had a full check up probably since he was in the hospital a few years ago when he got sick with pneumonia and had just run what was left of his body into the ground healthwise and all his levels inside were off balance. He has a home health nurse that comes about every 6 weeks to change out his suprapubic catheter and she checks blood pressure, sugar level(he has diabetes) etc. I have told him I thought maybe he should have an xray or CT of his head/neck to make sure all is ok. He doesn't respond when I suggest that...I take it as a silent no. It sucks that there are really no doctors around close that actually deal with high quads like him. He has pulmonologist for when he get pneumonia and urologists when he gets BAD Uti's...but no physiatrist or SCI specialists.

                  I read a lot and found where Vit D helps with moods...and he has not been outside or out of his bed since last Dec...so he had NOT been getting any sun to soak up Vit D. Hoping that will help!
                  As far as myself...I'm doing ok, I think as far as coping. I do everything I can to do what I can for him and leave the rest to God. There's no way I could do this on my own!

                  Comment


                    #10
                    Originally posted by LindaT View Post
                    My husband is a C3 complete and uses a vent at night or if he gets tired.
                    I understand your puzzlement about the imaginary ams and legs, but it is a very real thing for reasons someone else here will be able to explain.
                    My husband often feels he is sitting on an extra pair of legs that are tangled up and is trying to straighten out.
                    He also gets a lot of burning like hot barbed wire on his wrists.
                    Unfortunately he had a hard time catching on the Dragon and never really used a computer much before his injury in 2008. He was more of a mechanical fixer and now gets frustrated watching me try to fix things.
                    We do get out when we can.
                    Sorry I have no suggestions. Only that people do understand the "extra" arms and legs.
                    That must be an awful feeling for your husband! Fortunately, Bryan has not said anything about pain....just numbness. Sorry you husband is experiencing this
                    Yes....that frustration !! when I try to do what he tells me...and he knows exactly how it should be done...and I just "don't get it".

                    Comment


                      #11
                      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!

                      Comment


                        #12
                        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

                        Comment


                          #13
                          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?

                          Comment


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

                            Comment


                              #15
                              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.

                              Comment

                              Working...
                              X