when did you realize?

[t8burst]

This is a question for people injured later in life. I was 45 years old when I was in a car accident, broke my back and am now paralyzed (T8/ASIA A). Before my accident I was very healthy, aside from some stitches and a couple broken bones never saw the inside of a doctors office or hospital.

In other words, before my accident when I was injured I went to the doctor, did what they told me to do and in a certain amount of time I got better and went on with my life.

After my injury, I spent a good year just working full time trying to get into the groove, so to speak, of how to live with my new disability. Got a car, didn't like my wheelchair that the PT recommended in rehab so got a different one once I had been in one long enough to have a more informed opinion, flew enough last year to get my delta gold medallion back (not back to platinum yet, probably this year) but still was always fighting something. Driving my doctor nuts, I would badger him with "why is my pain getting worse", "why is my back locking up", "I shouldn't have to eat so much pain medication simply to function". In essence always looking to get "better".

Well last week I went to Mayo in Rochester, spent three days getting tested, xrayed, MRIed and evaluated. Aside from the possibility I have a fracture in my L5, one of my hips is higher than the other and basically no disk between my L5 and S1 there is nothing wrong (BTW, since I am a complete those problems really shouldn't cause me any distress other than some spasms).

Well it finally hit me, I am never going to get "better". I am just a guy who is paralyzed who is never going to get better, I have a chronic condition. In fact since I am no spring chicken, this is about is good as it will get and things will slowly get worse not matter what I do. I guess it is the last stage of the Kubler-Ross of SCI (although, it seems I spent a long time in denial and then went right to acceptance).

So I am curious, if you were injured later in life like me did you have a similar revelation? Did it happen faster and I am just slow? Any tips on transitioning from an acute, "I can fix this if I find the cause" mindset to a "all right this is forever so I have to manage my health with that in mind" strategy.

[maggie~mae]

My accident happened when I was 11, but it took me until high school for it to really sink in that I was really paralyzed. I would say it didn't hit home until I was probably 16 or 17.

[rdf]

"all right this is forever so I have to manage my health with that in mind" strategy.

I think you've done very well, and shouldn't worry about your health. Barring an accident, you'll likely live to close to the age you would have without an injury.

I was in rehab with a couple guys your age. I kept in touch with them for a bit after we were released, and they seemed to have given up on life. I imagine it's much easier to keep trucking on when you're younger. If you can win the mental/emotional battle of having a SCI, your physical health will be just fine, imo. Again, barring an accident or cancer or some such. You stay very busy, that's a good thing.

One thing, you need to get a cushion, or some other method to level out your hips. One hip lower than the other is a pressure sore waiting to happen, not to mention the pain issues in neck and back.

[t8burst]

Originally Posted by rdf

I was in rehab with a couple guys your age. I kept in touch with them for a bit after we were released, and they seemed to have given up on life. I imagine it's much easier to keep trucking on when you're younger. If you can win the mental/emotional battle of having a SCI, your physical health will be just fine, imo. Again, barring an accident or cancer or some such. You stay very busy, that's a good thing.

Hrm. Maybe this came across as a "why me" sort of thing. It is more I was looking for practical/planning sort of things. Like the Mayo doctor has given me Valium to try out for spasms. Works great, but now I have to think... do I want to take this for the rest of my life? How do you do that sort of planning Bobby? You have been doing this a while.

One thing, you need to get a cushion, or some other method to level out your hips. One hip lower than the other is a pressure sore waiting to happen, not to mention the pain issues in neck and back.

Yeah, I have an appointment at the mayo wheelchair fitting place for just that, as well as some sort of specialized PT as well.

[t8burst]

Originally Posted by maggie~mae

My accident happened when I was 11, but it took me until high school for it to really sink in that I would never be "normal" like my friends and that I'm stuck with this body whether I like it or not. I would say it didn't hit home until I was probably 16 or 17, after going through a lot of counseling (depression hit in HS). Every now and then I'll have a moment or two of the "what if's," wondering where I would be/what I would be doing today if I hadn't made that stupid mistake as a child. And of course d-day is always rough, and when I blow out the candles on my bday my wish is always for a cure and to be "normal" again. But I bet I'm not the only SCI who does that, right?

By my math a "cure" is minimum 10 years away. That puts me at 57 years old, and any sort of cure will come with years of hard core PT... and that is the best case scenario. When I blow out the candles I wish for something that could happen, like winning the lottery.

[ZEN12many]

I'm a T12 incomplete as a result of Transverse Myelitis in 2004. When I first became paralyzed (walking one day, paralyzed the next), the doctor gave me some info to read that said that of TM patients, about 1/3 will have no improvement, 1/3 will have moderage improvement, and 1/3 will have substantial improvement. Though the doctor warned that he thought those stats were optomistic, I figured I would be in the third with substantial improvement. I was in physical therapy and determined to walk again. Things did improve - weekly. I was on my way. But then improvements slowed down after about 8 months and stopped about 9. I could walk with considerable struggle with a walker - arms doing most of the work. They kept me in physical therapy for another 3 months.

It didn't really hit me though, that my situation was permanent, until I had to get my rehab doctor to renew my temporary handicap parking permit again. As I was giving her the paperwork to approve, I was annoyed at having to renew the permit again and was thinking to myself "why don't we just issue a permanent handicap parking permit?" when the doctor said "why don't we make this permanent". Somehow I knew it, but that made it so final.

[Wheel Travel]

Originally Posted by t8burst

By my math a "cure" is minimum 10 years away. That puts me at 57 years old, and any sort of cure will come with years of hard core PT... and that is the best case scenario. When I blow out the candles I wish for something that could happen, like winning the lottery.

My accident occurred when I was 29, and I am the same age as you are. Of course, the doctor's told me I there was no hope of ever walking again, but in the back of my mind, I held on to hope for a cure.

I went to Detroit years ago to find out if I was I candidate for the procedure in China. With more research, I realized that would not be a wise choice.

Three years ago I had a couple willing to foot the bill if I was approved for the procedure in India. Once again with further research, I realized that was not a wise choice either with much disappointment.

I have been in a manual wheelchair all of these years and now I fear growing old, and my shoulders not being able to handle it anymore. I have arthritis in my shoulders, and I control the inflammation with medication and an occasional cortisone shot.

When I blow the candles out on the cake, I wish for happiness. I work full time and have wonderful friends and family, but I do not have a lot of motivation anymore. I still try to care of myself, but I need to get into an exercise routine once more.

I will be relocating to Austin in the summer, and I hope I can find some positive energy!

[rdf]

I just take it day by day, and don't look into the future too hard, Tom.

I'm only now getting a Ride cushion to help my lower left hip be level. I first realized I had one lower hip just 2 years ago, 23 years after my injury. I asked the PT the other day how long she thought my hips had been out of whack. She said it usually happens in the first year or two. So I'm not the best planning person around, nor it seems the most aware.

I just take things as they come, and don't fret in between. Too much of that going on in the world already.

Originally Posted by t8burst

Hrm. Maybe this came across as a "why me" sort of thing. It is more I was looking for practical/planning sort of things. Like the Mayo doctor has given me Valium to try out for spasms. Works great, but now I have to think... do I want to take this for the rest of my life? How do you do that sort of planning Bobby? You have been doing this a while.



Yeah, I have an appointment at the mayo wheelchair fitting place for just that, as well as some sort of specialized PT as well.

[brucec]

I never cared for doctors, so after my rehab, i threw all my pills away and went back to be normal, was years before i saw a doctor, went back to work and been there 30 years, mainly so i never had to wait for the government or some insurance to tell me when i can get a new chair, etc. and with the cure always 10 years away, i never really cared about it, just kept living life, still do

[stephen212]

I think it took me about 5 years or so for the "foreverness" of my injury to really sink in. Intellectually, I wasn't holding out a lot of hope (I was injured in 1983) but when you're young you're accustomed to getting sick (colds, flu, chicken pox, etc.) and then recovering and going on your way. There was hardly any SCI research taking place back when I was injured and the only fringe therapies from charlatans or dreamers, which I pursued. Eventually reality hits home because, well, paralysis stops being what happened to you and becomes instead what you are. That's not surrender, that's moving on. I've been injured now for over 28 years -- a lifetime -- and I'm never not aware of my paralysis (as can be judged the time I spend on CC), but I'm no longer acutely aware of it. With time, measured in years, a new normal displaces the old normal -- that's healthy and for most reasonably well-adjusted people, the inevitable outcome.

Tom, have you looked into becoming involved in the exoskeleton walking trials sponsored by Ekso Bionics (formerly Berkeley Bionics)? If your current health issues don't disqualify you from participating, this may be an exciting path for you to take.