Page 2 of 2 FirstFirst 12
Results 11 to 20 of 20

Thread: Just can't stand it

  1. #11
    Quote Originally Posted by lynnifer View Post
    I'm so sorry. Don't even know what to say.

    You are supporting your mom and she is your caregiver? What about an assisted living facility? Basically an apartment where you can call for help when you want up or to be turned etc?

    Sounds like a poisoned environment at home.

    I thought Dr Edgerton had done his estim with 23 quads with success? Hang in there.

    Trying something new always gets me out of a funk. I wish I could solve something for you ...
    Actually after talking to the CEO it was 15, still pretty good odds. The thing about moving into assisted living, getting a nursing agency, Moving into a home is the bedtime will now be concrete every fucking day there's no option there, it's not much better at home but still makes a difference honestly I would... I would say kill myself, but I can't, it a home though eventuallywith none of my family to witness I would resort to starvation. I can't live such a deprived defenceless life,. Which brings me to the most important thing the only way I can pursue my diet , Exercise enough, do the various things for various bodily functions to prevent the paralysis decay and most importantly have somebody available that I can trust to go overseas or across the border so I get in a clinical trial. That can't be done in the other three options I have, sad fact is those are the only fucking options in my life, many quads can understand what that feels like! future is paved in front of us. Unless I had $8000 plus to spend a month I wouldn't be able to get the necessary care to keep my body healthy enough, let alone in a State ID still acceptable. I know a lot of people on here, try to pretend anything is possible but that's not true when your injury is bad enough. Unfortunately I have no choice but to burden my mom ( Took over after dad, but she genuinely believes we can beat this at least get me independent, I have my doubts) , because if I take the other options there will be nothing left to recover even with our best abilities the rod has caught up to me even still in numerous different ways, and I need someone ready to travel at a decent price! If I give up and move into a home,or rely on a nursing agency to come in morning and night, the fight is over there is no fight it's live like this permanentlywhich means let people take care of you for the rest your life In which case I hope I have the balls to end my life. But there still glimmers of health in my body it's on it's last foundation but I'm always working and have a few things up my sleeve. Please don't waste your time telling me there's still a reason to live like this, or being cared for is my new fight; I am not you I do not believe that, I don't even feel all that and I'm the kind of person that every now and then I have to feel strong, or Else I just feel like an empty shell. The only way I could achieve or succeed in something like that is to win the actual fight recover, then just maybe it would make all this indignity Worth it.

    On a lighter note even you very chronic injuries, I believe you will still be able to regain independence at least a 60% difference and we all know how much that will affect quality of life. I truly believe that, maybe it is just because I have to but I now know that my suffering with SEI is so much bigger than just me, it's happening to people all over God only knows how many poor bastards are stuck in their basement watching the same movies over and over all because they don't want to be burden someone to take them out or frankly they don't have someone to do it. only have someone to do the bare minimum,at the minimum we all know what that is and that does no good for anyone's self-respect or spirit. C it is a true blight on this world and human life, it's ugly as ugly can get, and it is relentless! It needs to be eradicated not condone so it can spread onto its next victim

    Truth be told I was ready to go to the hospital last night and just not leave until assisted suicide was granted, but you can't get wheelchair taxis at 3 o'clock. Fitting I guess they just assume all of us are nicely tucked in the bed. Once I cooled off I realize there's still things I can do for myself I have contacts now, I'm finally making progress. But also I got to million dollars to my name by the end of this year, and I am not going anywhere until at the very least I can leave behind for SCI research so maybe one day nobody ends up like this again. If I end up being gone before that, well then all of this pathetic indignity was for nothing and as bad as I think of myself for living like this, I couldnt stoop any lower knowing I could contribute to the cause, And not doing it even if it is The only way to get out of this, this lifestyle I'm too far in nowthere's nothing to preserve.,and plenty of people will need that contribution. Dream big, maybe instead I could use it to repair myself and be a spokespersonc to get it out there! A fool's dream, but the only one I'm willing to pursue in a life like this
    Last edited by JamesMcM; 05-03-2016 at 10:47 PM.

  2. #12
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
    Posts
    19,320
    Worried for you James.

    There is no indignity in getting some of this stuff off of your chest ... I mean to a real person. I've done it three times over my life with paralysis. It does help to lift the heavy burden ... no one can do this alone. Please tell me you'll look into it. Just try it once. Maybe twice if you don't like the person you get.

    My friend Sue is C5-6 and drives a van ... she has a nurse come in the morning (CCAC) to get her washed after bowel care and dressed and out of bed. At night she relies on ALSO (assisted living workers that will come into your home). She can cancel at night anytime she wants to stay up late as her sister lives next door, niece lives not far away and both can help her. Her mother is over 80 and having her own problems now so that's not an option, though they continue to live together. She has actually become quite good friends with each worker and ends up going to concerts or shopping or out with them which is great! I've met a few and they're pretty awesome.

    I wish you could drive. It would give you so much freedom .. but not in your current mental state! Careful with that money. Don't let your family blackmail you for care. I never had to deal with that and had to work instead ... but just please be careful.

    I know it's hard ... but they are so damn close now. It would be a shame to pack it in now. We hope for the best (treatments in the next few years) but expect the worse (ten years). That's how we deal.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #13
    Quote Originally Posted by Mac85 View Post
    Amen james, amen...
    I was a bodybuilder too, you can play video games. I have a ps4 and I use a Quadstick.com
    If you're interested I know a guy that has your injury and he is two years post. He plays really good so he could help you out
    I know people keep saying that, but reality is you can't hold L2 R2 well utilizing both analogue sticks and pressing the necessary interact, jump, disarm buttons. Plenty of controllers have told me they found a way how to do that, I bought it was lied to again simple logic dictates that even with a Chin stick, sip and puff, accompanied by sensationalist curled hands at best you can utilize four actions on the controller and not exactly simultaneously. No amount of practice will change that. So I'm stuck with racing, strategy, puzzle and a few sports, not my cuppa tea really
    Last edited by JamesMcM; 05-04-2016 at 12:03 AM.

  4. #14
    Quote Originally Posted by lynnifer View Post
    Worried for you James.

    There is no indignity in getting some of this stuff off of your chest ... I mean to a real person. I've done it three times over my life with paralysis. It does help to lift the heavy burden ... no one can do this alone. Please tell me you'll look into it. Just try it once. Maybe twice if you don't like the person you get.

    My friend Sue is C5-6 and drives a van ... she has a nurse come in the morning (CCAC) to get her washed after bowel care and dressed and out of bed. At night she relies on ALSO (assisted living workers that will come into your home). She can cancel at night anytime she wants to stay up late as her sister lives next door, niece lives not far away and both can help her. Her mother is over 80 and having her own problems now so that's not an option, though they continue to live together. She has actually become quite good friends with each worker and ends up going to concerts or shopping or out with them which is great! I've met a few and they're pretty awesome.

    I wish you could drive. It would give you so much freedom .. but not in your current mental state! Careful with that money. Don't let your family blackmail you for care. I never had to deal with that and had to work instead ... but just please be careful.

    I know it's hard ... but they are so damn close now. It would be a shame to pack it in now. We hope for the best (treatments in the next few years) but expect the worse (ten years). That's how we deal.
    OK I just want to make this clear, I'm not going to keep beating people and their advice away, but I don't need it I don't want it this isn't why started the thread I literally started it simply just put my thoughts out their and guess what it calmed me down. My mental state has nothing to do with me not driving,it's my extremely aggressive spasticity and more importantly my horribly functioning right arm. I've spoke to Many shrinks, had psych valuation, even taken antidepressants for a solid six months ( works best when the placebo effect has more leverage ) I party, I've "travelEd", I dedicated and entire year practically to embrace the other side of this see what it is to live like this try and do as much as possible which means asking and expecting a lot, so at that time I went out on a regular basis. But at the end of it it just reinforces my ideals, The more time I spend with supposedly motivation fellow disables the more it reinforced it.

    What I can assure you is despite being beyond angry last night I'm in a healthy state of mind. I think a common misconception that a lot of us I injuries is because we want to die that we aren't in a healthy state of mind well there's no evidence to support that. There is nothing unhealthy or ill rational about choosing death of being cleaned and cared for permanently, the elderly do it all the time! Samurai used to kill themselves after a defeat, honour killings in terms of their societies views that was perfectly rational and they were mentally healthy. Nowadays everybody is so afraid and ass wiping staying on tippy toes to be politically correct, a pill to solve any of your problems even sadness, I think it's ridiculous especially when you dive into situations were 90% of your body is dead and almost 100% of your day relies on someone else. I'm not new to this game anymore, I know many quad that live on their own,CCAC come in the morning and a friend or someone help at night,and they call it independence. There still under someone else's schedule, a day cannot be completed on their own that's the problem having for all of us! Weather doesn't bother them or not it's not right! as I said when you bring in these organizations, you get your standard care but here it goes things like vibration plates till table every day, and extensive supplement regimen my smoothies and rigourous diet, applying electrostimulation, performing a hair treatment in the morning and night ( yes I have no shame in it I greatly value physical appeal as much as physical strength ), bladder filling, getting certain devices that I apply myself but still require a little bit of assistance, my leg braces at night keep me straight ( very difficult for them to get on ), AFOs to prevent drop foot the list goes on you won't get these things! I've talked about it with my dad's friend who uses these organizations it's just not possible, for him even if they would provide it he wouldn't put the effort in anyways. All of these things are vital to keeping a paralyzed body in tact. You are right things are coming and I will only burden my parents as long is there is a justifiable victory insight, which I truly believe there is. Also I will help her financially, but do not worry about me being swindled I do not put up with that shit one bit but I have not been spending my money conservatively I have spent thousands and thousands of dollars on the intensive top-of-the-line therapy to try and recover independence so I could self transfer, drive etc. apimprove my right arm just for pain reasons even. it's helped keep my body relatively intact, but I've still see no recovering,I still don't even have minor course debility function to utilize balance exercises and my spasticity continues to get worse and worse. And if I were to commit to the cripple life I would have to greatly reduce my physiotherapy time, if not cut it out altogether! Not an option.

    You guys need to listen to Alan Watts Haha he has some really beautiful profound videos on life and death. I agree with them death isn't something you should pity someone for it's almost something you should be excited for them. We often assume "This life" isall we got, so the human condition we overemphasize it, it's the only thing we can comprehend, All of us agree upon it that's all it is. The only true validity religion has is massive amount of people wholeheartedly believe it therefore for some of us that's all it takes it's a reality. I don't believe in religion,but I believe in something more than us . Thing is life isn't as beautiful and precious as we try to make it out, as humans were a cancer let's be honest,this world can be a hell of an ugly place but often the most ugliest things come by our work or at least our kind. And even in individuals trying to be the best they can we can lose enough to make life not worth living , Where it in packs more than just ourselves. Suicide has its impact I don't deny that, but had I died in that car accident and it would've been one below, now it is an anchor dragging on as a reminder. The times when everyone agreed "James won't live this life" are over, the assumption is made that I've succumbed to the life of the chair, which truth be told hi cervical injuries at best lead a path of a very generic life. ( similar to strong majority of able-bodied people that's why it's called generic ) You're not gonna be special forces travelling the worldactively participating in history, facing things only a handful of people could face. you're not even going to be an individual backpacking the entire world by yourself getting to the most extravagant and hiding often dangerous places this earth has to offer, growing old on your own yet with so many memories,never being tied down. Instead you're often shackled to where society can provide affordable living and adequate "assistance" is readily available. so follow the path of find someone you love, have a couple kids if you can go to work ( that is possible with your disability, papers/ desk job ) and then retire. Retirement ( able bodied or disabled for most ) basically means take up the job of preoccupying yourself till you die...
    Last edited by JamesMcM; 05-04-2016 at 12:35 AM.

  5. #15
    At least twice a day we all deserve a 10 minuteBreak lol

  6. #16
    Quote Originally Posted by JamesMcM View Post
    I know people keep saying that, but reality is you can't hold L2 R2 well utilizing both analogue sticks and pressing the necessary interact, jump, disarm buttons. Plenty of controllers have told me they found a way how to do that, I bought it was lied to again simple logic dictates that even with a Chin stick, sip and puff, accompanied by sensationalist curled hands at best you can utilize four actions on the controller and not exactly simultaneously. No amount of practice will change that. So I'm stuck with racing, strategy, puzzle and a few sports, not my cuppa tea really
    really... https://www.youtube.com/watch?v=Q2bMwXwixsk
    He has more videos on the his channel, check them out
    C5/C6 Complete since 08/22/09

  7. #17
    Quote Originally Posted by Mac85 View Post
    really... https://www.youtube.com/watch?v=Q2bMwXwixsk
    He has more videos on the his channel, check them out
    HmmI can definitely tell he's utilizing at least three buttons at once. Frig I'm so hesitant to do this because I bought the LP everyone he talked it up and it was suchgarbage, then I decided to broaden horizons whatever buttons were better quality but they're far to Space to have quick reactions when you can't feel your handsThe triggers are controlled by sip and puff but it's always the analogue sticks that are the real problem. Fuck it, I might as will try it if it works out the beauty is I have an Xbox one which means I can turn the bitch on my own . I imagine I'll need help setting it up? But you know what when it's done other than my leg bag i'll be able to stay out of peoples hair for a few hours. My only two concerns our events up not working out very well because that gets really frustrated, or people bitch about setting it up for me and or use it against me if they notice I start enjoying it. My mother wouldn't do that, especially committing to it.but others might, that's when people die in my mind
    Last edited by JamesMcM; 05-04-2016 at 01:50 AM.

  8. #18
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
    Posts
    19,320
    Well, I do believe in reincarnation. I hope the next one is better, but if I end up in Africa with ebola, it certainly won't be will it? lol

    I'm glad writing here helps you.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  9. #19
    Quote Originally Posted by SCIfor55yrs. View Post
    James, it's tough. People understand but that doesn't make it any better. Sometimes it helps to retreat to under the covers and live in a fantasy world for a while.

    This guy understands.

    That was morbidly entertaining, but I don't think they have to worry and terms of spinal cord injury at least every survey I see 90% of people say they rather be dead than paralyzed from the neck down guess what lots of people feel that way get paralyzed And end up sitting in the chair and getting taken care of the rest of their life. I don't know dude I found getting jumped by four people tough, I found working a 12 hour construction job and then heading straight to boxing after tough, I found one someone I grew up with killed three people, talking to his brother was tough. I don't know what i'd call this humiliating, decorating, belittling, infuriating, soul sucking nothing noble that's for sure. My mom's pretty tough though, even though I wish she would kind a learned to appreciate the small things, no different than my little sister do them a lot of good. But it's hard to appreciate things when you think they mean nothing, just standard.

  10. #20
    Quote Originally Posted by DaDutchman View Post
    James, you don't know how much we are alike. My circumstances are a little different and I'm at least twice your age, but the mental thoughts are the same. I'm tired of being dependent upon someone to do some of the simplest things. In my case, when I have home health aides here, I can have them do many things for me that my wife won't do or get mad at me for having to do it. Last week I was in so much pain and couldn't get comfortable in bed, so I called the night shift aide up from the basement to get me dressed and put me in my chair. This was 5 am. When the aides are here, fortunately my auto insurance pays for them (a benefit of Michigan's Auto No-Fault Law), they stay in our basement. I finished off the basement during the summer of 2007, a few months before my accident. So the aides are sitting in a very nice place. Have a TV with satellite service. A very large walk-out basement glass door, 8 feet wide. A bathroom and free Wi-Fi. They do a ton of stuff for me. In turn we have given up our privacy for one thing.

    As I mentioned, we may think alike in many ways. However, this a difference and I think it might be significant. I'm older than you so I've been fortunate to experience many things that you may never have the opportunity to. Sorry about that, but that is the brutal truth and unfortunately I think you'll agree with me. That being said, there are many things then that you'll have some twisted benefit of not knowing what you're missing. Consequently, I've experienced many things that I thoroughly enjoyed and now know that I may not get to experience them again. That's where these able-bodied people need to know and understand how precious everyday tasks or events can be taken in a flash. I try to tell my friends, the very few left, not to take everyday moments for granted. When I look and review the backgrounds of those who are quads, a very large number of them were injured at a young age like yourself. Going forward, for many of them it's like being born again in a sick way. Since there are many things they'll never get to experience, and not know what they're missing, they can set their path forward. For someone such as myself, being injured much later in life, the mental battles can be agonizing. Always remembering the things you enjoyed doing and knowing you may never get to do them again just burns you out mentally.

    I've mentioned it before in another thread about how much of an inconvenience I am to my wife and children. When the aides are not here my wife is the one who takes care of me then. This is where her agenda for the day really doesn't have me at the top of her list. Consequently, when I need something she'll do it, but without first giving a deep sigh or rolling her eyes. Can really make you feel loved and wanted. I'm not sure there is an answer for us James. Whether or not you want to believe it, you are much better off than I am. You stand, no pun intended, a better chance of walking than I do. That might be provided you can keep yourself together mentally for another decade or so. You may have the luxury to see which trials are truly successful and which are not. That way you don't have to take part in a trial and hope you don't get the placebo.

    I'm with you James, for better or worse.
    Yeah man, I hear what you're saying you're probably right even though I don't know specifically know what you're talking about probably best I don't Eh. I've seen your post before I can tell that we have some similarities. Truly sorry about your situation then, I don't know shit about marriage it's never been my thing but I know divorce very well and when marriages go bad seen that my entire life ( not to say that yours is ).I can't imagine what a sudden SCI can do to an already existing marriage, different if you enter the relationship with an injury! Thanks for sharing dude even though it's not pleasant, good luck is all I can say.

    But those fucking "sighs" tho,I know exactly what you're talking about little different since your wife, but I'm at my wits and with that kind of shit! Honestly sometimes I think maybe it's best that my time does end and I don't recover because I've had to sit on the lot of very very dark real anger, and I can feel the painful rage it causes inside frankly I am concerned what would happen if I did have my strength again. I actually have pretty damn good self-control but I'm only human ( A human with problems in this category ) and that is starting to become serious
    Last edited by JamesMcM; 05-04-2016 at 03:18 PM.

Similar Threads

  1. Easy Stand Strap Stand P2000 with straps and tray for sell
    By TRB in forum Equipment & Services
    Replies: 1
    Last Post: 07-20-2015, 02:13 AM
  2. Sit to Stand?
    By WolfeMan in forum Equipment
    Replies: 15
    Last Post: 06-01-2013, 06:31 AM
  3. Replies: 1
    Last Post: 08-29-2012, 11:09 PM
  4. please stand
    By addiesue in forum Life
    Replies: 26
    Last Post: 01-27-2007, 10:15 PM
  5. stand aid
    By krajaxa in forum Cure
    Replies: 0
    Last Post: 12-23-2002, 06:43 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •