I'm 47 going on 34 years post SCI injury. Just would like to compare notes.
Jeff
Welcome Jeff, Ive been a walking C5/6 quad for 20years. There are many members here who could probably relate, what level are you?
I am also a walking c5/c6. I was completely paralyzed from the neck down. Slowly while the swelling went down, over the course of 2 years, I was fortunate to regain maybe 50% back. I've never met anyone like my injury. Dominate left side, very little hand movement, little to no triceps,weak hamstrings and cavs and very little usage of right foot and ankle. All that being said I could still walk 2 miles unassisted if my life depended on it back in my 20's. My 30's is when the joint and nerve pain really became a factor. I started physical therapy 8 years ago again and it just doesn't seem to stay ahead of getting older.
Welcome Jeff, Ive been a walking C5/6 quad for 20years. There are many members here who could probably relate, what level are you?
I am also a walking c5/c6. I was completely paralyzed from the neck down. Slowly while the swelling went down, over the course of 2 years, I was fortunate to regain maybe 50% back. I've never met anyone like my injury. Dominate left side, very little hand movement, little to no triceps,weak hamstrings and cavs and very little usage of right foot and ankle. All that being said I could still walk 2 miles unassisted if my life depended on it back in my 20's. My 30's is when the joint and nerve pain really became a factor. I started physical therapy 8 years ago again and it just doesn't seem to stay ahead of getting older.
A fellow walker eh! And back when we learnt to walk again, there was no such thing as Project Walk and all of these physical therapy places now to learn to walk again, we had to do it ourselves and prognosis back then was a lot more pessimistic. Like you, as the swelling went down, I slowly got movement back, it took me 18months to walk again without aides. My right side is slightly weaker than my left, I have a little foot drop in my right foot and right hand doesnt open as well as my left (still slow though), Ive got pretty good grip but they tire easily, have the other usual problems but its all under control so I dont really find them an issue, just how life is nowadays. I'm one of the lucky ones who doesnt suffer from nerve pain, just have back pain from a poor walking gait.
Just recently I found out about (from this site) and joined a facebook SCI walkers group, I have found it beneficial in that everyone else is like me and understands and I dont feel as guilty for being able to walk when so many cannot. Ive had some SCI people think I dont understand their suffering because I'm a walker and it was hurtful, hence why this walkers site has been great. Here's the link www.facebook.com/groups/1311153908905293
I am also a walking c5/c6. I was completely paralyzed from the neck down. Slowly while the swelling went down, over the course of 2 years, I was fortunate to regain maybe 50% back. I've never met anyone like my injury. Dominate left side, very little hand movement, little to no triceps,weak hamstrings and cavs and very little usage of right foot and ankle. All that being said I could still walk 2 miles unassisted if my life depended on it back in my 20's. My 30's is when the joint and nerve pain really became a factor. I started physical therapy 8 years ago again and it just doesn't seem to stay ahead of getting older.
A fellow walker eh! And back when we learnt to walk again, there was no such thing as Project Walk and all of these physical therapy places now to learn to walk again, we had to do it ourselves and prognosis back then was a lot more pessimistic. Like you, as the swelling went down, I slowly got movement back, it took me 18months to walk again without aides. My right side is slightly weaker than my left, I have a little foot drop in my right foot and right hand doesnt open as well as my left (still slow though), Ive got pretty good grip but they tire easily, have the other usual problems but its all under control so I dont really find them an issue, just how life is nowadays. I'm one of the lucky ones who doesnt suffer from nerve pain, just have back pain from a poor walking gait.
Just recently I found out about (from this site) and joined a facebook SCI walkers group, I have found it beneficial in that everyone else is like me and understands and I dont feel as guilty for being able to walk when so many cannot. Ive had some SCI people think I dont understand their suffering because I'm a walker and it was hurtful, hence why this walkers site has been great. Here's the link www.facebook.com/groups/1311153908905293
Just goes to show that no two spinal injuries are the same. Some get full recovery, some get partial recovery, some get no recovery. You are one of the lucky ones.
I am also a walking c5/c6. I was completely paralyzed from the neck down. Slowly while the swelling went down, over the course of 2 years, I was fortunate to regain maybe 50% back. I've never met anyone like my injury. Dominate left side, very little hand movement, little to no triceps,weak hamstrings and cavs and very little usage of right foot and ankle. All that being said I could still walk 2 miles unassisted if my life depended on it back in my 20's. My 30's is when the joint and nerve pain really became a factor. I started physical therapy 8 years ago again and it just doesn't seem to stay ahead of getting older.
A fellow walker eh! And back when we learnt to walk again, there was no such thing as Project Walk and all of these physical therapy places now to learn to walk again, we had to do it ourselves and prognosis back then was a lot more pessimistic. Like you, as the swelling went down, I slowly got movement back, it took me 18months to walk again without aides. My right side is slightly weaker than my left, I have a little foot drop in my right foot and right hand doesnt open as well as my left (still slow though), Ive got pretty good grip but they tire easily, have the other usual problems but its all under control so I dont really find them an issue, just how life is nowadays. I'm one of the lucky ones who doesnt suffer from nerve pain, just have back pain from a poor walking gait.
Just recently I found out about (from this site) and joined a facebook SCI walkers group, I have found it beneficial in that everyone else is like me and understands and I dont feel as guilty for being able to walk when so many cannot. Ive had some SCI people think I dont understand their suffering because I'm a walker and it was hurtful, hence why this walkers site has been great. Here's the link www.facebook.com/groups/1311153908905293Actually I was extremely fortunate. My injury occurred in 1985 when I was 14. I was immediately put in a hallow and within 2 weeks I was flown to Chicago by The Shriners to The Shriners Hospital for Crippled Children (yes,very offensive but that was the name on the building back in those days). I was one of their original patients at their new SCI unit under the recently retired Dr Volgel. They performed surgery on me and for the next 5 months my days were spent in physical therapy and occupational therapy. They even had an in staff teacher so when I started high school, credits were earned for the first semester that I missed.So for 5 months they taught me how to use my new body. My nerve pain is about 70% under control with the help of Lyrica and Neurotin and the body adjusts to rest of the pain. Interesting that you used the phrase "poor walking gait". Ive been told, which is pretty obvious, that the gait of my walk for over 3 decades has really jacked up my lower back like you mentioned. I'm not here to complain about pain because it is what it is. However I would like to hear from others how pain has affected their relationships with friends/family and spouse. I had a pretty independent life, college/career and marriage but as im getting older my quality of life is getting worse by the year. Reading the threads here has helped me understand certain situations a bit more clearly. Thank you for the Facebook link! I'm waaaaay too old and have lived with this injury waaaay too long to feel any guilt for my ability to walk if others feel that I'm not "broken " enough for them.lol.Also, thank you for taking the time for your interest.
Don't think I posted this correctly. I'll get use to this site eventually...
Actually I was extremely fortunate. My injury occurred in 1985 when I was 14. I was immediately put in a hallow and within 2 weeks I was flown to Chicago by The Shriners to The Shriners Hospital for Crippled Children (yes,very offensive but that was the name on the building back in those days). I was one of their original patients at their new SCI unit under the recently retired Dr Volgel. They performed surgery on me and for the next 5 months my days were spent in physical therapy and occupational therapy. They even had an in staff teacher so when I started high school, credits were earned for the first semester that I missed.So for 5 months they taught me how to use my new body. My nerve pain is about 70% under control with the help of Lyrica and Neurotin and the body adjusts to rest of the pain. Interesting that you used the phrase "poor walking gait". Ive been told, which is pretty obvious, that the gait of my walk for over 3 decades has really jacked up my lower back like you mentioned. I'm not here to complain about pain because it is what it is. However I would like to hear from others how pain has affected their relationships with friends/family and spouse. I had a pretty independent life, college/career and marriage but as im getting older my quality of life is getting worse by the year. Reading the threads here has helped me understand certain situations a bit more clearly. Thank you for the Facebook link! I'm waaaaay too old and have lived with this injury waaaay too long to feel any guilt for my ability to walk if others feel that I'm not "broken " enough for them.lol.Also, thank you for taking the time for your interest.
I, too, can use a walker though the chair is my primary means of transportation. Just 10 years has given me significant scoliosis . My walk is weird with one leg apparently longer than the other. that is due to the kink in my lower back. osteoporosis is sever. Danger of UTIs is "managed" with Chinese herbs at a cost of around $80/month. Other non-covered health care expenses run over $300/month. If I did not have the ability to pay for that stuff my life would be miserable.It is what itis and getting old is no picnic.
Friendships? few, and all begun long before my SCI.
whitedog, I’ve never seen anyone here think that anyone else isn’t “broken enough”. Perish the thought. Glad you got movement back. And it sounds like you did a lot of work to get it.
Thats a really interesting story, thankyou Jeff and if one can be fortunate with this type of injury, then yes, you were fortunate at the time that you were one of the originals to be cared for so well. It took many years over here in Australia to catch up in the care that the US offers, back in rehab, all they tried to do with me was teach me wheelchair skills when it was obvious that I was getting some movement back, hence why my family and I checked me out or rehab early and got a private physio a few days a week to help learn to walk again.
As for how my injury/pain has affected my relationships, my husband left me when I was 7 months pregnant 2 half years after my accident, I liken him to a rat deserting a sinking ship because my previous life was over. Since then, Ive had one serious relationship (where my daughter met him) and he never really understood my injury even though he tried, didnt fully understand about how I would 'need' to use a toilet as soon as possible, looking back and analysing, I can see why we didnt last, he wasnt overly full of empathy, oh well.
For the last several years Ive chosen to remain single as my daughter has traversed through her teenage years. My beautiful girl understands me more than anyone ever has and to her, I'm not disabled, I'm just Mum, when she was 5 she grabbed my hand and told me that she would help me cross the street, she's 18 now and still holds my hand when the ground is uneven.... has helped me up off the ground on the many times I have tripped. I dont complain about my pain to my family and friends, but my daughter can see how it affects me, sometimes the pain creeps up and it affects my mood first, I start getting crabby and then a short while later, I realise I've been putting up with the pain for a while.
How has your injury/pain affected your relationships?
I like your analogy about not being broken enough for others, they would never admit that, but its obvious that they think that way because they have actually told me that I dont understand.....oh well.....I no longer engage with them or comment in their posts.
I like your analogy about not being broken enough for others, they would never admit that, but its obvious that they think that way because they have actually told me that I dont understand.....oh well.....I no longer engage with them or comment in their posts.
HEY GUYS AND GIRLS my name is steve and i broke my neck in 1987.c2 thru c4.left me a quad.with alot of therapy i started getting movent after 62 days. started walking but with a limp .my left side was affected.drop foot and weakness in 1999 was in a car acc. and broke c5 thru c7. had to start over again.since than i have had 4 diskectomys.i am still walking but i fall i alot .i hit bottom of pool the first time.because of that my spine got compressed quite bad .thus the diskectomys.i will continue to have them .i was in traction for 3 weeks before my first surgery to pull the spine back in place or as good as can be.im now 63 this week ,still walking not great but walking. i've never given up.but you do have to change the way you think