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Thread: What is happening with my shoulders

  1. #11
    Quote Originally Posted by lynnifer View Post
    I would go to the media about not finding the phrenic nerve thing ... my gawd what was the reasoning???
    Pointless, our NHS is under massive cost pressures and far more deserving cases than mine don't get publicity. It is quite a simple calculation, cost of my care ventilated v's cost of operation and reduction in care costs ,factor in life expectancy and see which works out cheaper,at 58 and not too long a life expectancy I understand why it didn't get done. My chest consultant had all the numbers but the CCG who fund my PA's didn't go for it. After about a year I did start to breathe, the nerves to one diaphragm kicked in and I went back into hospital to wean. I got up to 12 hours off the vent but went backwards last Christmas after an infection kept me in bed and vented. Since then I'm struggling to do 30 minutes at a time. Have to wean again which I am not looking forward to. I have similar problems with physio, didn't get any in spinal unit (15 minutes of ROM a day) and CCG won't fund physio now that I am home, there isn't anywhere local, won't fund an FES bike etc etc, had to do that myself out of pocket. Same goes if I want to bring a trained physio in to teach my PA's, I fund it. I can't complain too much I'm at home with 33 hours a day of PA time paid for by CCG, I can choose when they come in and adapt around my work, I'm fortunate to have this as working has helped me get this far.

  2. #12
    Quote Originally Posted by mrb View Post
    The way I look at it is that it is a war, we fight battles and take casualties, can't avoid them if you take on the fight. There are always going to be side effects but you have to balance future risks for living in the now. I hate Baclofen and pre Gabalin about 6 months post accident I stopped all meds, wanted to feel my body free of them, I couldn't remember what it was like pre accident, all I had was post accident and I'd been on them from then. I soon found out, spasms went crazy, hyper sensitivity in my chest hit new levels of craziness after about a week I started re introducing them until I found a balance. I've tried to reduce them at times but need them, about to have another go at baclofen as my FES bike seems to reduce spasms. We'll see if I can win that battle! I've got 24/7 care plus 2nd PA 9 hours a day to get me up and put me to bed so no excuse for not doing ROM, 4 x 45 minutes a day is the norm and my shoulders are still dropping, can't really do more as I still work and do an hour on FES bike everyday and still want time with my wife. Drugs affect my ability to work, sick of being drowsy from them so it is another compromise At least botox doesn't make me sleepy or affect my mental ability.Like you I led an active life pre injury, worked for a mountain bike company, majority of my life spent biking, when I wasn't doing that sports cars and fast motorbikes or gym. Looked after myself, eat reasonably well, no alcohol or drugs and doing ok for my age. I'm a lot older than you and even if a cure was found I'd be way down the waiting list, no insurance compensation for my accident I have to rely upon our NHS and at my age the cost of treatment v's benefit yrs wouldn't stack. They wouldn't fund phrenetic nerve stimulation to get me free of the vent! So I guess I am stuck like this, got to fight to keep my life balanced between enjoying (haha) stuff now and worrying about damage I am doing long term, won't worry too much as when the shit gets too bad I'll push the exit button in Swizerland.
    I wish this was a war,or at least a fight so maybe I could find a shred of pride or at least feel a little bit alive;it's not though. All I am is to be taken care of The caregivers do the actual effort, i digress. I understand your train of thought, is just so infuriating nothing we can do keep us healthy,even if we show rigourous determination and sacrifice with our diet, physiotherapy etc. it's just not enough, at best it prolongs the inevitable. I'm sorry you had to live like this for so long, I'm going to be up four years post soon and even at that point there's not much left of my body and I've spent thousands and thousands on physiotherapy, but as I said I lack the function to exercise myself when I'm not at physiotherapy as I said it needs to be a constant effortto make it truly beneficial; if I could do that with my own efforts and sweat and ability as well as look after myself while I do it then maybe I would be able to believe this is some kind of a fight, but that's not the case. But I think there's still a chance I could benefit from these treatments I just need the money to help fund them and put them together, which is why I need to avoid these medications and supposed treatments at all costs, because if I blindly take him it'll close the door permanently to a real fight which is getting out of this chair.

    as for war, I haven't served in the military I know nothing of war, I understand it's uglier than I could possibly imagine, as I am not na?ve, but I still want to be there to experience it to test me mentally and physically truly,find true bravery, resilience and fortitude in myself! only the rarest of people go forward into that let alone make it out of that whole.

    I read about how you were denied the surgery, and I couldn't help but realize you are very trapped. Please don't find that offensive I mean no offense, I am trapped very much too in a very literal sense. But for them not to offer you the chance to breathe on your own rid yourself of that awful device (I still have my trach scar from acute care, I got off it after six months I don't pretend to understandwhat life is like with it ) simply for financial reasons for god sake's it's made me feel trapped/ deserted just thinking about that . I'm sorry man, I truly am I just wished it was something I could do for all of us, if I win all my lawsuits I genuinely think I can but that's a longshot and it's looking like my time is coming, because of failure. I think both of us need to take solace in the fact that may very well have found treatment for acute spinal cord injury, I don't know if you can see the beauty in that but we may be in the final chapters of this ugly reality that is dependency from one accident...
    Last edited by JamesMcM; 04-10-2016 at 11:29 PM.

  3. #13
    Mental warfare. You against you. Talk to a vet with combat experience...I have been told SCI is just as tough. Either way it doesn't matter; intense suffering is intense suffering.

  4. #14
    Quote Originally Posted by Chaz19 View Post
    Mental warfare. You against you. Talk to a vet with combat experience...I have been told SCI is just as tough. Either way it doesn't matter; intense suffering is intense suffering.
    Well I don't believe that one bit, ( whether or not a combat veteran says something like that does not change my perspective at all! one of them, 20 of them doesn't matter, I expect that to be anyone's response these days, especially someone that has been influenced by SCI in someway) and I'm sure that vet is injured himself or has friends he watched become paralyzed and wants to believe that to make it justifiable somehow, who am I to say why though that's just what I see when people try to tell me that. The reason I don't believe it one bit is because very very few people have what it takes to be able to even keep composure let alone actually participate and be productive in destructive intensive combat, I'd say at most 3% of the entire population very small portion of the military personnel is that kind of soldier. Then you take SCI , Literally anyone can do it, there's millions of us. Funny thing look on any high traffic website that does polls on whether they'd rather live or die after being paralyzed from the neck down a vast majority say they'd rather die and they speak it with conviction usually, guess what evidently almost none of them commit to it they just survive the preordained time of five years for the brain to literally forcibly adapt to its new environment/lifestyle and they live with it. I believe in true strength, and I call it true because of how rare it is. The stuff that movies are made of, you know those films we love to watch that inspire us, entertain us, satisfy us, blow us away etc. but then when we leave the movie theatre we say oh that's not real life, they exaggerated The true story details. well whether that's true or not maybe our expectations are just set too low ( especially in a pampering modern society, where acts of real courage is often quite literally frowned upon and punishable) so we re-create New "achievable" definition of strength, nobility, honor etc that fit right in with our society and can remain comfortable with our overwhelming mediocrity amongst the population.

    But at the end of the day in the grand scheme of things it has nothing to do with being "harder" mental or physical suffering, warfare "tough" whatever being a burden is being a burden, indignity is indignity I don't feel just because I bumped my spinal cord that automatically means something very undignified that even if I did once would leave me very much questioning myself before injury, is now perfectly acceptable on daily basis. to just live like this nearly completely dependent I can't think of one thing that makes it justifiable and I've had plenty of people in person and on here trying to give me examples. Now if someone gets them selves out of this chair (dependent lifestyle) however they do it, I believe that would be "warfare" the amount of effort physical and mental that would take, is it comparable to the strength, courage, conviction I expect in a productive frontline member of special forces of A major countries,even a MMA fighter during battle where nothing but subconscious will and physical strength and kill take over, no, but still Noble, impressive etc. The true beauty of it, nobody's done it not from a complete and very chronic, and most importantly it would affect far more than just yourself. Which would make living a dependent Life justifiable to me! And my pursuit of that is the only reason I even have slight self-respect, let alone keep breathing. I don't believe in changing yourself to adapt/accommodating to Less ( I see that as the very definition of surrender not perseverance or resilience, the very ignorant na?ve belief that death is the easy way, apart from being foolish and delusional doesn't remotely provide incentive to see the situation as noble, honourable, "strong"). I don't compare mental warfare ( as you call it) on its own,to the situations I desired to test myself in that involve physical AND mental warfare to the limits few can face. Especially when the vast majority of the physical warfare of SCI ( The little that exists) is on somebody else, that's the deciding factor! Believe me if I could actually utilize my resilience, and determination on my own I'd be posting motivational pictures but that's not the case, sadly. At the same time thank God I'm not one of those people there's nothing motivating about condoning something that takes so much from people and will continue to take from people, especially if I'm just trying to make myself feel better about my disability by getting peoples approval...

    The sickening irony is I might very well be one of those, to get a gun to the head and freeze up, frantically beg for my life, or God for bid direct the action on to someone else to save myself! I highly doubt it but I haven't faced it so how I would I know, I'll never truly know myself, or my true value.
    Last edited by JamesMcM; 05-12-2016 at 09:15 AM.

  5. #15
    Super Moderator Sue Pendleton's Avatar
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    James, for the seizing up shoulders check where you sit if your home has air conditioning. We have a vent right above the best seat for me at our dining room table so we redecorated. Skip the Botox and try these. https://www.google.com/express/produ...rectCheckout=1 Have some one check around the edges after an hour to be sure your skin is OK with the glue. Read and follow the directions about showering and wait times. I get a size that fits where my rhomboids cross the edge of my scapulas. Sort of hit the edges of both. They say 4 hours but I often leave them on all night when I need them. A smaller one works on my mid back right at waist level and the spine. I find they help more than Flexeril and without the side effects. Oh, and no smell unlike the non-capsicum patches. Salon Pas is the best brand from the ones I've tried.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  6. #16
    Quote Originally Posted by Sue Pendleton View Post
    James, for the seizing up shoulders check where you sit if your home has air conditioning. We have a vent right above the best seat for me at our dining room table so we redecorated. Skip the Botox and try these. https://www.google.com/express/produ...rectCheckout=1 Have some one check around the edges after an hour to be sure your skin is OK with the glue. Read and follow the directions about showering and wait times. I get a size that fits where my rhomboids cross the edge of my scapulas. Sort of hit the edges of both. They say 4 hours but I often leave them on all night when I need them. A smaller one works on my mid back right at waist level and the spine. I find they help more than Flexeril and without the side effects. Oh, and no smell unlike the non-capsicum patches. Salon Pas is the best brand from the ones I've tried.
    Thanks I'll look into it, been having good luck with the seizing with massaging. i'm finally getting my right shoulder scanned. Should've done it closer to my accident, this right arm has made a lot of pain but more importantly a lot of functional implications

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