46 replies to this topic

[Parachute]

Hi samsara

I am able to walk.

I am C 3/4 Incomplete-Central Cord. I walk without aid. I am still efforted with all four limbs so I am tetraplegic/quadraplegic. Anyone that is efforted by two limbs is a paraplegic. There is no such thing as not being a real paraplegic. There is also no such thing as 100% recovery. I can do everyday thing which I did before my injury. I can also run. I can not run lkie before. I take me 21 seconds for 100 metres at the moment.

[DebbieR]

Oh my goodness I thought I was the only one. L1 walking para. I walk very well and I look fine. However, I am fused from t8 to l3 with bone Graf- 19 screws. I went from wheelchair to walker and now on my own. People tell me if they didn't know my medical history they would never believe. I suffer from ton of back pain. I still can't bend well. I am 35 years old but I look Like I am 22. I was in the grocery store the other day and this older lady dropped a can off the shelf. She looked at me like " well arent you gonna help me pick it up" I told her I am sorry I can't bend. She rolled her eyes at me and said unbelievable. ....
Aside from that I am numb on my hips. I also find the cold weather makes my back hurt more. Sometimes it's like I can't even move in the morning. Constant back pain. I am tired of meds. My doc was talking about doing something where they kill the nerves in my back. I really don't want anyone touching my back again. I also can't lift heavy things. I can't even life a bag of cat litter. I walk into pteco and I can't even get any help.

It's sooo freggin true. It's like if you don't look disable people think your just full of lt.... SMH

[wheeliebear75]

 DebbieR, on 24 August 2011 - 04:58 AM, said:

Oh my goodness I thought I was the only one. L1 walking para. I walk very well and I look fine. However, I am fused from t8 to l3 with bone Graf- 19 screws. I went from wheelchair to walker and now on my own. People tell me if they didn't know my medical history they would never believe. I suffer from ton of back pain. I still can't bend well. I am 35 years old but I look Like I am 22. I was in the grocery store the other day and this older lady dropped a can off the shelf. She looked at me like " well arent you gonna help me pick it up" I told her I am sorry I can't bend. She rolled her eyes at me and said unbelievable. ....
Aside from that I am numb on my hips. I also find the cold weather makes my back hurt more. Sometimes it's like I can't even move in the morning. Constant back pain. I am tired of meds. My doc was talking about doing something where they kill the nerves in my back. I really don't want anyone touching my back again. I also can't lift heavy things. I can't even life a bag of cat litter. I walk into pteco and I can't even get any help.

It's sooo freggin true. It's like if you don't look disable people think your just full of lt.... SMH

If I were you I'd make sure to avoid wearing dresses....this way you can turn around, lift up the bottom of your top (this way you can still wear skirts) & show off your scar! See how many roll their eyes THEN .

[dom]

 DebbieR, on 24 August 2011 - 04:58 AM, said:

Oh my goodness I thought I was the only one. L1 walking para. I walk very well and I look fine. However, I am fused from t8 to l3 with bone Graf- 19 screws. I went from wheelchair to walker and now on my own. People tell me if they didn't know my medical history they would never believe. I suffer from ton of back pain. I still can't bend well. I am 35 years old but I look Like I am 22. I was in the grocery store the other day and this older lady dropped a can off the shelf. She looked at me like " well arent you gonna help me pick it up" I told her I am sorry I can't bend. She rolled her eyes at me and said unbelievable. ....
Aside from that I am numb on my hips. I also find the cold weather makes my back hurt more. Sometimes it's like I can't even move in the morning. Constant back pain. I am tired of meds. My doc was talking about doing something where they kill the nerves in my back. I really don't want anyone touching my back again. I also can't lift heavy things. I can't even life a bag of cat litter. I walk into pteco and I can't even get any help.

It's sooo freggin true. It's like if you don't look disable people think your just full of lt.... SMH

Wow how did you think you were the only one????????? there are loads of people posting who can walk and have been for years? i don't understand

[DebbieR]

No, no, I know I am not the only one walking... I meant I though I was the only one that Felt the same way she does.

[dom]

 DebbieR, on 24 August 2011 - 07:41 PM, said:

No, no, I know I am not the only one walking... I meant I though I was the only one that Felt the same way she does.

OH ok sorry for the misunderstanding

[wheeliebear75]

I don't know.....I had heard OF others who like me could do some walking.....but until this forum I'd never actually been able to talk to anyone else that was in the same row of the same F'd up SCI life-boat. Which is why if anyone reads my profile & my "about me" section they'd see that until finding this forum & this wonderfully diverse group of people including a few others who could hobble around a bit & even some that can walk better than me....but ALL OF US speak of the same issues. I'm so glad Simon was nice enough to create another section just for us incompletes so we CAN discus the issues we have with being a gray cog in a world seen as white squares & black circles (you know the "round peg in a square hole" thing).

[Parachute]

Hi samsara

I am a incomplete quad/tetra. I walk very good. You would not know that I have a soinal cord injury.

You are a real paraplegic. I once had the catherter for nine weeks. Wet myself the day after catherter taken out. Wet myself since. Pood myself twice at least. Take Movicol every night for bowel management.

While in hospital I could not feel fingers up my bum, so I guess that I am a real quad/tetra. I also needed feeding and my bum wiping I guess you are a real paraplegic.

I do more or less the things that I did before the injury but my balance will never be the same. I have daily spasms and the rest. I can jog. If you saw me, you would not know I have a spinal cord injury. You are not the only one.


Parachute

[lonebobseytwin]

I was diagnosed with SCI-WORA (without radiographic abnormalities), I look normal, and walk without aides. I can't stand or sit for very long. But I have terrible chronic pain, spasms, blood pressure that won't hold me up without meds, autonomic dysreflexia, temperature problems, some bladder problems, and I sleep alot. After my accident ( a lovely flight of stairs on my back) my blood pressure was the first thing to go, I lost feeling in my left arm and left leg below the knee, the nerve pain was really bad. It took a long time for someone to listen to me and a great pain management who was a spinal cord specialist put the pieces together all those little things make sense now.
I eventually got the feeling in my arm and leg back but it's never been the same (via radiofrequency nerve blocks)
Over time we've figured out my injury lives in my thoracic spine since it's where the changes have been. I also have cervical dystonia in my neck which makes for a really interesting time if the other spasms weren't fun enough.

It's interesting to know I'm not the only one moving around out there with a sci like this.

[Arjuna]

new here- have a dropped mestatic brain tumor that left inoperable tumors scattered from c3 to t10.. they only could biopsy a thoracic tumor and do a graft ... diagnosis was then agressive glioma.. i went from being able to walk with a walker at that time to now .... almost eight years after i was given a death sententce ... to being able to walk at times .. then being bed bound and unable to move legs at all. frustrating. Over time everyone did look at me when i could walk with all the spinal tumors and either laugh when i stumbled or just not believe that i was unable to count on being able to move at times. People were very cruel- unless it was their own problems they wanted to talk about. I live with unrelenting pain now, can transfer and walk by leaning on arranged furnitre in case i have to stop and collapse. I turned down full brain and spinal radiation as well as chemo. told by Oncologist it would assuredly leave me more disabled and with severe complications. When i can walk a litte with the walker in Massively great pain... even the mailperson seems to not believe i can be in that much pain or sometimes am unable to even go to the door. so it goes. i lived long past the predicted outcome for my condition. I guess if you do even the medical establishment kinda writes you off when they can do no more. I was even hassled by Social Security Disability about being bedfast at times and unable to travel for a re-evaluation. I am a veteran, however you will find that after years with a varying problem that is not compelte sometimes and worse at others even their system does not know where to pidgeon hole you . other than suggesting a nursing home.. bahhhh humbug to that.. stay as independent as long as possible .. Meditaion and Music have been my only refuge... even freinds get tired it seems of someone who is chronically disabled. There a lots of us out here with varying degrees of disability.. the spinal nerves and structures are still a mystery at times. conduction and function come and go on some of us. without good stress to the spine with assisted weight bearing you will lose even more bone mass.. take care. blessings

[Rdaysha]

Read my topics and see how I've been treated. Its crazy because I'm not looking to br accepted. Who wants to be a sci person? Not me but I am one but I get ridiculed because I can walk. I guess if I post a video of my spasms or me losing bladder control then I'm the real deal. All I care about is giving hope to others.

[Shane G]

I know what you mean. I broke T9 & T10, was paralyzed, lost complete control of by bowels and bladder and lost sensation from my belly button down. Since my injury I have recovered where I walk without assistance, but only about 50% of the muscles function in my right leg. I still can't feel much pain or hot/cold from my belly button down and I don't have to use catheters anymore.

I speak to groups about my spinal cord injury and the miracles God performed in my life and I get bashed by people on the internet, but it's mostly people without faith.

You can read about my story on my website: www.ShaneGoddard.com

 samsara, on 08 April 2011 - 03:25 PM, said:

Hi,

I'm pretty new to this forum. Though I have been here before, back then I also didn't meet members who like me, are able to walk.

I'm an incomplete para and walk without any aid. It would be great to meet other "incompletes" :-), to hear if they too also have some difficulties about being understood when our SCI isn't visible, at least not by the first sight:-). I find it really has been hard to get to where I am today. I am not AB and I am not a "real" paraplegic!!! The last words are not from me but what I hear from para's in wheelchairs.

Hope to get some response to this:-).

[Priscilla]

I too am an incomplete paraplegic and am able to walk with aids. I cannot walk without aids due to the dead bone in my left ankle. I wear a brace on my left leg and walk with a walker or quad cane. I have Cauda Equina Syndrome and have no feeling in my butt or genital areas and do have a little B&B control. So no, you are not alone. There are plenty of people who understand where you are coming from.

If anyone asks me I try to educate them and if they do not believe me I lift the bottom of my shirt up to show them the scars up my back and around my belly button. Almost impossible to deny I was in a major car accident. I am fused from T11-L3 and had the nerves compressed from L5-S2 because of my crushed pelvis. This is a great resource for Incompletes! Good luck to everyone here.

[Dutch30]

I'm a "normal" walker as well. When I'm walking nobody would ever know a have SCI. I have no bowel / bladder problems and almost full sensation. I have a spot by my ankles which feels just a little more numb then the rest of my body. I got this because of severe stenosis in my neck on 3 levels. But people who don't know that I have SCI will only notice the big scar on my neck. And the people that do know me can tell because I have ADHD and used to run around all crazy filled with energy and rocked out on stage with my band swinging my body from side to side. Unfortunately those reckless days are over.

But my body does really feel somehow damaged from the inside. Can't really explain, but the arms get sore after a day of work behind the computer and my legs always feel weak like some sort of growing pain in them. And then there is that freaking clonus which makes walking down stairs a bit trickier then before. I had to change sports from running, fitness and kickboxing to easy cardio and swimming. And since I'm rather new (6 months post op) I will probably learn more things and situations that I have to adjust or find another way to make it work.

[Rdaysha]

 Dutch30, on 11 February 2012 - 11:11 PM, said:

I'm a "normal" walker as well. When I'm walking nobody would ever know a have SCI. I have no bowel / bladder problems and almost full sensation. I have a spot by my ankles which feels just a little more numb then the rest of my body. I got this because of severe stenosis in my neck on 3 levels. But people who don't know that I have SCI will only notice the big scar on my neck. And the people that do know me can tell because I have ADHD and used to run around all crazy filled with energy and rocked out on stage with my band swinging my body from side to side. Unfortunately those reckless days are over.

But my body does really feel somehow damaged from the inside. Can't really explain, but the arms get sore after a day of work behind the computer and my legs always feel weak like some sort of growing pain in them. And then there is that freaking clonus which makes walking down stairs a bit trickier then before. I had to change sports from running, fitness and kickboxing to easy cardio and swimming. And since I'm rather new (6 months post op) I will probably learn more things and situations that I have to adjust or find another way to make it work.

I feel the same if I can't get it back then I have to find another way to make it work!

[Kitson]

Yep I hear you - Im usure how to pitch myself to people - Im I normal? well to be honest Ive never been that!

[andycans]

hi i am c5/c6 incomplete walk alittle with crutches or a stick but also use a wheel chair your not alone out there i sometimes feel i should not be on here 2 but if you keep looking you will find what u r looking for