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Coming to terms with SCI Jul 12, 2013 15:55:28 GMT -8

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Post by Deleted on Jul 12, 2013 15:55:28 GMT -8

Hi Guys
As this is a subject we can all relate to I thought it would be a good discussion point. We have all had to come to terms with having Spinal Cord Injury or if you are a non SCI then you will surely know someone who has.

How did you come to terms/accept your injury?

I can remember in my early days after becoming SCI'd I would dream often that I could walk. The dream repeated itself and I was always excited to come home and tell my family that I was OK now and could walk again.
Then I would wake up and once fully awake I would realise that this was only a dream as I looked by my bed and saw my chair.

I actually think I came to terms with my new physical state very quickly, my biggest stress throughout this was learning to self catheterise and this was mainly due to frustrating bladder spasms.

I like to think I retained my positive outlook and was pretty much accepting, what was done was done kind of thing.

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Coming to terms with SCI Jul 12, 2013 18:04:48 GMT -8

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Post by jerseyboy on Jul 12, 2013 18:04:48 GMT -8

I'm a realistic person so i didn't even think about walking when i was injured since i was paralyzed neck down. But i did have many concerns about what type of restrictions i would have throughout my life. I think took it better than most but there were still certain things i had to do to force myself to move on. I used to be extremely fit before my accident and played sports my whole life. All my jobs, sports, recreational activities involved a great deal of physical ability. To go from Mr.Macho to Mr. Paralyzed took a toll on me. I had that issue even after i started walking. Only recently have i been able to shake that feeling.

Somethings i had to do to spare myself grief were to delete a lot of pics, delete my facebook, and cut ties with some of my friends because our common interests included things that i just couldn't take part in anymore. Lucky for me, i was never a big fan of pictures or facebook so that part wasn't so bad. Letting go of those certain friends was difficult though because i felt like i was losing my only ties to who i used to be.

Our lives are dramatically changed after a SCI, but one thing that doesn't have to change is our energy and spirit. Spirit can be affected by a negative mindset but ones energy cannot change. For example, i've always been one to be constantly challenging my body and i'm still like that. Sure i cant squat hundreds of pounds or do martial arts anymore but theres always a way to channel your energy in a way that satisfies you.

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ridingdirty Senior Member Posts: 242 Post Likes Received: 84 Date Joined: July 2013 Injury: t4 Date Injured: 06/24/2012 Member is: Offline Send PM	Coming to terms with SCI Jul 13, 2013 5:11:19 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by ridingdirty on Jul 13, 2013 5:11:19 GMT -8 i always work hard an belief i will get better. i pray to god everything be ok wit me one day. but i never give up i alwayss exercising hard an try to make better and strong my bodie.

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Coming to terms with SCI Jul 13, 2013 8:59:32 GMT -8

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Post by jerseyboy on Jul 13, 2013 8:59:32 GMT -8

Jul 13, 2013 5:11:19 GMT -8 ridingdirty said:

i always work hard an belief i will get better. i pray to god everything be ok wit me one day. but i never give up i alwayss exercising hard an try to make better and strong my bodie.

."everything will be okay with me one day"

what do you mean by 'okay'?

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Coming to terms with SCI Jul 13, 2013 9:12:24 GMT -8

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Post by DJ on Jul 13, 2013 9:12:24 GMT -8

Good question Lara! I remember being in the ICU unable to move, speak or even breath on my own and hallucinating because of all the drugs I was on. It was a really scary and tough time but I managed to stay strong and keep positive. I always looked forward to having my parents and family come to visit me and remembered trying to move different parts of my body such as my feet, fingers, etc. Till this day I'm still unable to move my feet and fingers but there's still things I can do which is what keeps me going. I focus on what I can do and improve on it and try not to think about the things I can't do. I always stayed positive and mentally/emotionally it's help me. I've learned to accept what's happend and move on with life because there's no point looking back, it won't change anything now. The "healthcare professionals" like to say I'll never walk again but I have faith that it'll happen, one day.

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Coming to terms with SCI Jul 13, 2013 9:30:11 GMT -8

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Post by Deleted on Jul 13, 2013 9:30:11 GMT -8

Its great to read the honest replies from you guys.

SCI certainly changes our lives, no doubt there. I found that I lost friends and relationships changed and went also.

I am happy to be able to say that the people I have met post SCI have enriched my life. Sure, there is much I can no longer do, I used to be very actively involved with my horses but now i cant really do much with them at all...this saddens me.

That said, I have always been positive and looked for the good side and I know for me that if i remember some of the fellow patients in rehab who had absolute complete injuries and could only move their shoulders slightly then i remember that I am one of the lucky ones.

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Coming to terms with SCI Jul 13, 2013 9:44:32 GMT -8

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Post by DJ on Jul 13, 2013 9:44:32 GMT -8

It's definitely changed our lives but not necessarily for the worst. It's been an experience for me to learn who my real friends are and those that I thought were. I've also met many friends after my SCI and they're all mostly SCI'd as well but I feel that I have a closer relationship with them as they have more similarities to me opposed to a 'normal' friend.

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Coming to terms with SCI Jul 13, 2013 11:00:52 GMT -8

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Post by ridingdirty on Jul 13, 2013 11:00:52 GMT -8

Jul 13, 2013 8:59:32 GMT -8 jerseyboy said:

Jul 13, 2013 5:11:19 GMT -8 ridingdirty said:

i always work hard an belief i will get better. i pray to god everything be ok wit me one day. but i never give up i alwayss exercising hard an try to make better and strong my bodie.

."everything will be okay with me one day"

what do you mean by 'okay'?

I hope one day i walk like normal.

jerseyboy Member Posts: 171 Post Likes Received: 88 Date Joined: July 2013 Injury: C4-7 Date Injured: December 30, 2011 Member is: Offline Send PM	Coming to terms with SCI Jul 13, 2013 11:16:50 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by jerseyboy on Jul 13, 2013 11:16:50 GMT -8 Jul 13, 2013 11:00:52 GMT -8 ridingdirty said: Jul 13, 2013 8:59:32 GMT -8 jerseyboy said: ."everything will be okay with me one day" what do you mean by 'okay'? I hope one day i walk like normal. I see. When was your injury?

ridingdirty Senior Member Posts: 242 Post Likes Received: 84 Date Joined: July 2013 Injury: t4 Date Injured: 06/24/2012 Member is: Offline Send PM	Coming to terms with SCI Jul 13, 2013 11:54:05 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by ridingdirty on Jul 13, 2013 11:54:05 GMT -8 24 of june 2012.

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Coming to terms with SCI Jul 13, 2013 12:16:02 GMT -8

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Post by jerseyboy on Jul 13, 2013 12:16:02 GMT -8

Jul 13, 2013 11:54:05 GMT -8 ridingdirty said:

24 of june 2012.

You're already a year out and a bulk of most peoples recoveries happen in the first two years. I think its very important to be hopeful but realistic as well. Best of luck with your recovery.

ridingdirty Senior Member Posts: 242 Post Likes Received: 84 Date Joined: July 2013 Injury: t4 Date Injured: 06/24/2012 Member is: Offline Send PM	Coming to terms with SCI Jul 13, 2013 12:31:20 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by ridingdirty on Jul 13, 2013 12:31:20 GMT -8 thanks you too.

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Coming to terms with SCI Jul 14, 2013 0:25:00 GMT -8

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Post by wavewolf on Jul 14, 2013 0:25:00 GMT -8

Jul 13, 2013 12:16:02 GMT -8 jerseyboy said:

You're already a year out and a bulk of most peoples recoveries happen in the first two years. I think its very important to be hopeful but realistic as well. Best of luck with your recovery.

This is the generally accepted window of recovery for nerve damage. I am 4.5 years out, and still am recovering small bits of neural function. I think it depends on the nature of the injury--mine was demyelination, and there has been some actual healing. However, the cause of my injury was a disease process, not traumatic injury. Since my disease is chronic and progressive, and mutli-systemic, my prognosis is not good. But, I have worked very hard toward recovery of function despite this, and my doctors cannot believe I am walking at all! For me, necessity was the mother of invention--in my home, I could not use a WC. And my employer would not let me work in WC. I was strongly motivated to try to find a way, and I think that allowed me to move beyond expectations of recovery.

Being realistic is important, but envisioning the next step sometimes means attempting the "impossible"!

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Hoea ra!

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Coming to terms with SCI Jul 14, 2013 0:47:46 GMT -8

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Post by Deleted on Jul 14, 2013 0:47:46 GMT -8

Jul 14, 2013 0:25:00 GMT -8 wavewolf said:

This is the generally accepted window of recovery for nerve damage. I am 4.5 years out, and still am recovering small bits of neural function. I think it depends on the nature of the injury--mine was demyelination, and there has been some actual healing. However, the cause of my injury was a disease process, not traumatic injury. Since my disease is chronic and progressive, and mutli-systemic, my prognosis is not good. But, I have worked very hard toward recovery of function despite this, and my doctors cannot believe I am walking at all! For me, necessity was the mother of invention--in my home, I could not use a WC. And my employer would not let me work in WC. I was strongly motivated to try to find a way, and I think that allowed me to move beyond expectations of recovery.

Being realistic is important, but envisioning the next step sometimes means attempting the "impossible"!

What can I say other than you are the kind of person who totally inspires!

You are determined and positive....it sounds like you had no other option but to work hard at gaining the function you have, however difficult it may have been.

Can I ask why you were not allowed a chair at work?

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Coming to terms with SCI Jul 14, 2013 1:09:37 GMT -8

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Post by wavewolf on Jul 14, 2013 1:09:37 GMT -8

I play in an orchestra, and maneuvering a chair through expensive instruments was deemed too much of a liabiity. They have no idea how my teetering on canes/braces is far less stable! But I can fit through smaller spaces. No one tries to make it easier, safer, etc. The stage is treacherous for me with cables, small items on floor, dim lighting, and just tight maneuvering at odd body angles. If I cannot see my feet clearly, I have no idea where they are!

I am learning to ask for accommodation when I need it. The conductor allowed me to use his personal rest room, to which I made a bee-line at intermission and end of concerts! Next year there will be various conductors auditioning for the position, so this is not likely to be an option. I have to work out something other than waiting in line when I am at my absolute limit and have no control. If I have a bowel accident, I will be fired (already a precedent...non-SCI). Able-bodied people can have no idea of the anxiety that incontinence produces. I will ask for help in carrying my gear also, and will try to get accessible parking secured so I can use my WC to get into the building. There is one "handicapped" parking space for the concert hall, and it does not have space to transfer to a WC. I always came 1.5 hours early to be sure to get it! I didn't use my WC, and carried about 40lbs of gear hanging off my body--now I cannot do this. A parking garage a block away has NO accessible spaces, but there are some that could work with WC if I can get them reserved. If I cannot work out the parking, I may not be able to continue this work.

Hoea ra!

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Coming to terms with SCI

Post by Deleted on Jul 12, 2013 15:55:28 GMT -8

Post by jerseyboy on Jul 12, 2013 18:04:48 GMT -8

Post by ridingdirty on Jul 13, 2013 5:11:19 GMT -8

Post by jerseyboy on Jul 13, 2013 8:59:32 GMT -8

Post by DJ on Jul 13, 2013 9:12:24 GMT -8

Post by Deleted on Jul 13, 2013 9:30:11 GMT -8

Post by DJ on Jul 13, 2013 9:44:32 GMT -8

Post by ridingdirty on Jul 13, 2013 11:00:52 GMT -8

Post by jerseyboy on Jul 13, 2013 11:16:50 GMT -8

Post by ridingdirty on Jul 13, 2013 11:54:05 GMT -8

Post by jerseyboy on Jul 13, 2013 12:16:02 GMT -8

Post by ridingdirty on Jul 13, 2013 12:31:20 GMT -8

Post by wavewolf on Jul 14, 2013 0:25:00 GMT -8

Post by Deleted on Jul 14, 2013 0:47:46 GMT -8

Post by wavewolf on Jul 14, 2013 1:09:37 GMT -8

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