30 replies to this topic

[Jfagan1385]

My name is Jeff. This is my first post ever on any SCI site. This post is for all the people that are trapped in the middle world of walking quadriplegics. I would like to tell people my experience with the intention of offering advice to others that are about to go through the same 28 years that I have.
I had a sports injury on Friday the 13th 1985. I broke C5/C6 and was completely paralyzed from the neck down for about three months. After my decompression surgery, many months of physical/occupational therapy and once the swelling went down, I was left with about 50% paralisis. My left side is less effected then my right. I walk with no assistance but with severe right gate. Left fingers move slightly, right fingers don't move at all. There isn't one part of my body from my injury down that I would consider normal. I'm 41 now and have lived a productive personal life along with three productive careers. Obviously I could write fifty pages about how my injury has effected my life and how I've delt with different situations but I would like to open this post up as a question/answer format to try to help others. Feel free to ask me anything. I realize that we all have different types of injuries however I'm sure that after 28 years I have advice to offer others.

Sincerely,

Jeff

[plank]

Welcome to the forum Jeff. Congratulations on rising above your difficulties and living your life to the full. To be injured at 13 must have been devastating - I was injured at 59 so most of my future was behind me.
There are many of us twilight quads here who walk with varying degrees of success and we are delighted to meet another one. Looking forward to getting to know you.

Plank

[Jfagan1385]

Thanks Plank. Good to meet you as well. Now that you have mentioned my age of 13, I see that I've made a mistake. My injury was when i was 14,so it's been 27 yrs not 28.Wow, and I have a minor in mathematics! For the first decade of my injury i quietly aknowledge the date of my injury in a private way. Since then I rarely even realize that date anymore.
This truley is a great site. In all my 27 yrs since my injury I've never met a walking quad like me.I knew there were many like me but for some reason I thought I would reach out to them now. I am very interested in the lingo like you using the word twilight quads. i've never heard of that before.
I've read about four hours of posts here and I can already feel some of the frustration between complete quads and walking incomplete quads.I can understand their frustration but a few of them should redirect their anger into something more positive.
One final note Plank...I hope this site sends me an email so I can validate it so I'm not a "Lurker" anymore..lol

[plank]

"Twilight quads" was a term I made up on the spot in my post above. As someone said in another thread it makes us seem alien which is certainly not my intention. It's just a term that indicates we are neither one nor the other - neither night nor day - neither walking nor sitting.

Don't worry about the "Lurker" tag, I think it will go with your next (5th.) post.

[lavenderthistle]

Welcome I'm a walker too...I call myself a hybrid, i've been called a part timer...etc. I'm sure you have lots of wisdom to impart to us and I look forward to more posts. We have a calling all walkers thread on here in the incompletes section.

[MTB John]

Hi I'm John and I call myself John. Unless I've been naughty in which case I call myself..
.. Actually when I'm mad at me I refuse to talk to myself so I guess I don't call myself anything at all.

Welcome aboard.
J
(short for John)

[ClaraTaylor]

Welcome I'm a walker too...I call myself a hybrid, i've been called a part timer...etc. I'm sure you have lots of wisdom to impart to us and I look forward to more posts. We have a calling all walkers thread on here in the incompletes section.

Another walker here, normally being led astray by Thistle. I've been called a failed cripple, a semi-cripple, a part time walker.... I guess there must be hundreds of names out there!

I hope you settle in nicely, don't force anyone to change, and learn a few things yourself on this forum.

[Jfagan1385]

After nearly three decades since my injury, there are many days and even weeks that go by that I don't even realize the injury and I'm far far far from normal. My mind has adapted just like my body has. Sure there's everyday reminders like nerve/joint pain but the frustration of not being able to do something or the looks and questions I might get in public...literally doesn't bother me at all. I had to let that go 20 yrs ago in order to live my life.
I've seen the term "broken" used a lot on this site and I find that funny because I've been using that term for 25 yrs but depending on the company I'm in I usually add F'n in front lol.
I would like to clarify my original post by saying that I have no concrete advice for anyone because we are all different. I can only share the experiences that I've had and maybe that can help someone in the future.

[wheeliebear75]

I was also injured at age 14; 4/28/1990 just before I turned 15,had a sign fall ontop of me head 1st, so TBI, disolocated (C2,3) (C6,7) (T2,3) (T6,7,8) (L2,3) + broke L2, neurologically speaking with regards to the timeline of gaining function back.....sounds similar to yours. Was able to get to where I could use crutches + braces throughout the 90's but because I "over-did it" & didn't listen to Children's Hospital when they said I should keep using the wheelchair for further distances & stick to using the crutches/walking for short distances.....so.....now I'm back to mostly chair cuz of 2ndary damage.....so I'm now crutches 50ft or less. Upper back & shoulders took a beating from those 10yrs or so of my hauling my lower 1/2 with the upper 1/2.

And the "member status" changes as you participate.

[Jfagan1385]

I was also injured at age 14; 4/28/1990 just before I turned 15,had a sign fall ontop of me head 1st, so TBI, disolocated (C2,3) (C6,7) (T2,3) (T6,7,8) (L2,3) + broke L2, neurologically speaking with regards to the timeline of gaining function back.....sounds similar to yours. Was able to get to where I could use crutches + braces throughout the 90's but because I "over-did it" & didn't listen to Children's Hospital when they said I should keep using the wheelchair for further distances & stick to using the crutches/walking for short distances.....so.....now I'm back to mostly chair cuz of 2ndary damage.....so I'm now crutches 50ft or less. Upper back & shoulders took a beating from those 10yrs or so of my hauling my lower 1/2 with the upper 1/2.

And the "member status" changes as you participate.

I was fortunate in the fact that I had no other complications after my 1st year post injury. I just got stronger and stronger. As the decades went by my mobility and pain has gotten worse. Mostly due to over compensating other muscles which has effected most of my joints. I have so much scare tissue in my knees and elbows due to falling thousands of times. I was very stubborn when I was younger and refused to use crutches when I should have been. I wanted to look as "normal" as possible. I was extremely determined to push myself above and beyond my limits.

[gwenr]

How long did it take to get over the depression? Going on 2 years now and still pissed as hell, and deeply depressed!!!!

[wheeliebear75]

It took ME about 5yrs to come out of the initial HELL. This isn't to say I've had my bouts of it since.....it just hasn't been for as LONG a duration or as pronounced.

[Ratticis]

Can't say I've ever really been "depressed", at least not for an extended period of time, but it took me about 3 months before I came to terms with the fact that "this is me now", so really there is no set "how long" answer. It's different for everyone, and some people never do learn to accept it

[Parachute]

Thanks Plank. Good to meet you as well. Now that you have mentioned my age of 13, I see that I've made a mistake. My injury was when i was 14,so it's been 27 yrs not 28.Wow, and I have a minor in mathematics! For the first decade of my injury i quietly aknowledge the date of my injury in a private way. Since then I rarely even realize that date anymore.
This truley is a great site. In all my 27 yrs since my injury I've never met a walking quad like me.I knew there were many like me but for some reason I thought I would reach out to them now. I am very interested in the lingo like you using the word twilight quads. i've never heard of that before.
I've read about four hours of posts here and I can already feel some of the frustration between complete quads and walking incomplete quads.I can understand their frustration but a few of them should redirect their anger into something more positive.
One final note Plank...I hope this site sends me an email so I can validate it so I'm not a "Lurker" anymore..lol

Hi Jfagan1385

I have met quiet a few walking quad like you in only three years. I myself are a quad and my biggest problem is bowels. Do you have a bpwel problem and if so, what do you do for it?


Parachute

[gwenr]

I am a partial walking para, though walk with quad canes. its been almost 2 years now. All from a botched operation with no MRI to see that there was no room for the spinal cord stimulator. The doc inserted a scs and damaged my spinal cord. I still am depressed. My life has totally changed. A week of intensive care, then a month of living in a rehab section of a hospital. I am still amazed - for a couple weeks I could not even move a toe, after walking into a 90 minute simple out-patient procedure with high heels. I am consumed with hatred for the doc that was so negligent.

[Jfagan1385]

After three months post injury just being 14 the only movement I had from the neck down was about a 2 in my biceps. I vividly remember how depressed and devestated I was for about two weeks. All I could think about is how bad I screwed up and that my life was over before I had the chance to see what I might have been athletically. I was at the SCI unit in the Shriners hospital in Chicago. Back in '85 the name on the hospital actual read Shriners hospital for CRIPPLED children. They used that name to gain more sympathy and more donations. That being said.. The Shriners organization was the most amazing thing that ever happened for me for my recovery! They flew me and my family up to Chicago in a private plane. The had one of the greatest neurosurgeons perform my c5/c6 decompression fusion surgery. I went to pt and ot everyday. They had a pool to help with therapy. They had a shrink that helped me through my brief depression when I didn't want to eat or get out of bed. They even gave me my own private tutor that counted my credits for my first semester of highschool. I was at their facility for 5 months and when I actually took the 20 steps from my chair through the doors to the car I could say that I walked out of that place! They provided me with a sporty light weight top of the line wheelchair and crutches when I was discharged and flew me back and fourth once a year for follow ups till the age of 18.
THIS WAS ALL PROVIDED TO ME AT NO CHARGE!!!

Thanks Plank. Good to meet you as well. Now that you have mentioned my age of 13, I see that I've made a mistake. My injury was when i was 14,so it's been 27 yrs not 28.Wow, and I have a minor in mathematics! For the first decade of my injury i quietly aknowledge the date of my injury in a private way. Since then I rarely even realize that date anymore.
This truley is a great site. In all my 27 yrs since my injury I've never met a walking quad like me.I knew there were many like me but for some reason I thought I would reach out to them now. I am very interested in the lingo like you using the word twilight quads. i've never heard of that before.
I've read about four hours of posts here and I can already feel some of the frustration between complete quads and walking incomplete quads.I can understand their frustration but a few of them should redirect their anger into something more positive.
One final note Plank...I hope this site sends me an email so I can validate it so I'm not a "Lurker" anymore..lol

Hi Jfagan1385

I have met quiet a few walking quad like you in only three years. I myself are a quad and my biggest problem is bowels. Do you have a bpwel problem and if so, what do you do for it?


Parachute

I've been extremely fortunate not to have a bowel problem of any sort except for constipation in the past from narcotics such as hydrocodone. I had to cath my first year but eventually I got to the point where that wasn't needed. However I've never been able to have a steady stream of urine and I must use my hands/fists to push in my bladder to empty it. I rarely had accidents when I was younger by taking a daily dose of difripan. I did have many accidents during my heavy drinking days while asleep. I eventually got off the difripan and rarely drink anymore and never have accidents for at least a decade.

After three months post injury just being 14 the only movement I had from the neck down was about a 2 in my biceps. I vividly remember how depressed and devestated I was for about two weeks. All I could think about is how bad I screwed up and that my life was over before I had the chance to see what I might have been athletically. I was at the SCI unit in the Shriners hospital in Chicago. Back in '85 the name on the hospital actual read Shriners hospital for CRIPPLED children. They used that name to gain more sympathy and more donations. That being said.. The Shriners organization was the most amazing thing that ever happened for me for my recovery! They flew me and my family up to Chicago in a private plane. The had one of the greatest neurosurgeons perform my c5/c6 decompression fusion surgery. I went to pt and ot everyday. They had a pool to help with therapy. They had a shrink that helped me through my brief depression when I didn't want to eat or get out of bed. They even gave me my own private tutor that counted my credits for my first semester of highschool. I was at their facility for 5 months and when I actually took the 20 steps from my chair through the doors to the car I could say that I walked out of that place! They provided me with a sporty light weight top of the line wheelchair and crutches when I was discharged and flew me back and fourth once a year for follow ups till the age of 18.
THIS WAS ALL PROVIDED TO ME AT NO CHARGE!!!

Thanks Plank. Good to meet you as well. Now that you have mentioned my age of 13, I see that I've made a mistake. My injury was when i was 14,so it's been 27 yrs not 28.Wow, and I have a minor in mathematics! For the first decade of my injury i quietly aknowledge the date of my injury in a private way. Since then I rarely even realize that date anymore.
This truley is a great site. In all my 27 yrs since my injury I've never met a walking quad like me.I knew there were many like me but for some reason I thought I would reach out to them now. I am very interested in the lingo like you using the word twilight quads. i've never heard of that before.
I've read about four hours of posts here and I can already feel some of the frustration between complete quads and walking incomplete quads.I can understand their frustration but a few of them should redirect their anger into something more positive.
One final note Plank...I hope this site sends me an email so I can validate it so I'm not a "Lurker" anymore..lol

Hi Jfagan1385

I have met quiet a few walking quad like you in only three years. I myself are a quad and my biggest problem is bowels. Do you have a bpwel problem and if so, what do you do for it?


Parachute

I've been extremely fortunate not to have a bowel problem of any sort except for constipation in the past from narcotics such as hydrocodone. I had to cath my first year but eventually I got to the point where that wasn't needed. However I've never been able to have a steady stream of urine and I must use my hands/fists to push in my bladder to empty it. I rarely had accidents when I was younger by taking a daily dose of difripan. I did have many accidents during my heavy drinking days while asleep. I eventually got off the difripan and rarely drink anymore and never have accidents for at least a decade.

Ditripan

[gwenr]

jfagan1385, and all

I would love to talk to you folks real time in the chat room, but never seems to be anyone there. Do you or anyone reading this thread go into the chat room? If so what time, and in what time zone? I went in about 10 times yesterday over a 12 hour period, but no-one there - I wonder if I'm doing something wrong to see everyone that might be on. ???

OR, does anyone know of another site that has a more active chat room?

Thanks much

[Jfagan1385]

Hi Gwen,
I've been in chat several times..usually at night US time and have already met some great people! I'm tied up for the next few days but if you would like to arrange a specific time to chat just pm me here and we will chat. I've found that once there are two of us in there many more come in.
Jeff

[andycans]

hi i c5/c6 tetra incomplete

[gwenr]

jfagan1385

Hi Gwen,
I've been in chat several times..usually at night US time and have already met some great people! I'm tied up for the next few days but if you would like to arrange a specific time to chat just pm me here and we will chat. I've found that once there are two of us in there many more come in.
Jeff

That would be great. Monday or Tuesday maybe? Don't know what time zone you're in (Pacific here), but I can't do too late because the muscle relaxers tend to put me to sleep about 9PM.
Thanks

[Jfagan1385]

jfagan1385

Hi Gwen,
I've been in chat several times..usually at night US time and have already met some great people! I'm tied up for the next few days but if you would like to arrange a specific time to chat just pm me here and we will chat. I've found that once there are two of us in there many more come in.
Jeff

That would be great. Monday or Tuesday maybe? Don't know what time zone you're in (Pacific here), but I can't do too late because the muscle relaxers tend to put me to sleep about 9PM.
Thanks

Sure Gwen...I'm in CST. Just private message me when I good time is for you Monday or Tuesday .. We can even go into the chat room during the day.

Hi Andy !

[gwenr]

Hmmm - not really computer savvy. Not sure about PM, Think I just found it though.

Thanks

Edited by gwenr, 14 July 2012 - 03:23 PM.

[Jfagan1385]

Hmmm - not really computer savvy. Not sure about PM, Think I just found it though.

Thanks

I see you have figured it out!

[Robert W Sullivan]

Well being a neby myself first day on this site I have found someone who is nearly the duplicate of myself. I got the bends the last time being in 1975 just after my second child was born. I have good function in my arms with just a bit of problem with my right hand. For the first year I was able to overcome my leg problems, all what I have come to find out is kind of standard, numbness, leg spasms, enough to send my wife to another bed, awkward gait, dropped feet, hyper reflexes. on and on. I made it to retirement age, with little on no assistance financial or medical. Even though it the last occurance was as a part of my employment. I was a Construction Diver but that is a story in itself. They decompressed me in a chamber at Childrens Hospital and the symptoms reoccurred again while they started to release the pressure.

9 years after retirement, last year I started to fall when I had to get up to go to the bathroom during the night. Then falling more and more until I started to use the chair fulltime. I bought when I had to walk long distances or went shopping etc. I bought my chair on my own, used, even though I am on Medicare, but didn't want the hassles involved with that.

The doctors have used the term "I suffered an insult my brain" to explain my total condition. Whoopie WTF does that mean? I had some shots a couple of years back to relieve the back spasms, he hit something that set my legs on fire. I never went back, it didn't do what it was supposed to anyway. What it did do was pretty much stop the worst of the leg spasms until a few weeks ago, when they started again full bore. Anyway that is a part of my story, the part we all seem to have in common more or less.

I do consider myself very lucky, most of y'all are far worse off than I am. This did change my life, but all change is not necessarily bad, and is what you make of it. It does anger me off to have had to stop performing that occupation, I was very very good at being an underwater mechanic. But eventually I found another occupation that I found very satisfying and fulfilling, that paid fairly well as well.

Edited by Robert W Sullivan, 17 July 2012 - 07:53 PM.

[Tetracyclone]

Welcome Robert. Yours is an interesting story.

[Jfagan1385]

Yes Robert...intersting story!

Welcome Robert and Andy and thanks to reading and posting to everyone that contributed to my topic!

Jeff

[wheeliebear75]

Welcome Robert.

Edited by wheeliebear75, 18 July 2012 - 10:52 AM.

[hobiercr]

Jeff, we sound very similar. I was 16 when I had my diving accident on Friday the 13, 1983 and was almost totally paralyzed for 3 months and then slowly began regaining function. The longer I had function the stronger and more tolerant to standing/walking I became. After 5 months I walked out of the hospital with paralysis still in my triceps and pect majors and weak hands. As you have I pushed forward, finished high school, graduated from college and have had a busy professional career. I have many hobbies, most involving speed (catamaran sailing, auto racing) and I feel lucky every day of my life, even though I do get frustrated often.

 

As with you I am dealing with inceased pain and wear on my jonts after my version of walking on them for 30 years. Ankles, knees, hips and back always have some sort of pain and it often moves around. Weather (cold, humidity) can seriously effect me and I cannot take any mediction with dextromethorphan in it if I plan to walk anywhere within the next 2 days. Most of my serious injuries since my accident have been entirely from my own stupidity, like falling off my roof while trimming branches with a pole chain saw. Thankfully that ended only with a broken nose (I landed on my face) and a broken wrist. Becaue of lack of triceps when I fall I tend to tear up my wrists, elbows and knees which are all fairly permanentally scarred. Temperature sensation below my nipple line is dull with no real hot/cold discernement. And I am more than thankful for the peace of mind caused by a single blue pill.

 

I mentioned this in another post but I have been working with a pilates instructor for the past year who is also trained in fascial stretch therapy. This has been amazing for my flexibility and I am excited to see where the strength building element of this program will take me. I also do a very low impact restorative yoga class every week which helps as well.

 

It is great to hear your story and feel like I have a kindred spirit out there.

[aainme]

Nice to meet you Jeff..... I am a t4-t5 incomplete spinal cord injury. It has been three years and I have been thru every emotion known to man. After the accident the Doctors told my family I would never walk. I was so critically ill I had no idea what had happened to me. Three and a half months in the hospital two of them on a ventilator. After that I had inpatient rehab....when i went in it was to learn how to live with my injury.... funny thing happened in that rehab they tried to teach me to stand with a frame kind of thing and i stood up with the help of two therapists. They then gave me a walker with my name on it.....That was the day i knew they had faith in me walking.... When I left there I could take 52 steps...I know there are so many of us that take one step, some take 50 steps... I walk ...I work..... I live each day in pain....that is some times very depressing........Then I also have depressing days when i feel overwhelmed by what the injury has done to my self image.... I walk with my cane, i limp or gimp all over.....I fall every couple of days in my house....some times in public, never at work thank God......my muscles in my torso have a paralysis so I can not get up easily....My right leg always has pain all I can describe is that it feels like my muscles will burst out of the skin....I have no temperature feeling below my breasts.... I still have total body spasms that make me pee on myself..... my feet feel like i have razors cutting my toes..... no feeling in half of my right arm and half my fingers of the right hand..... I am positive there are some reading this that will feel  I am telling their story...we are all so different yet so much alike......sooooo.....On the bright side I have a wonderful husband and family that love me no matter what.... That helps me to stop feeling sorry for myself and start celebrating all the things I can do and not letting the things i can not do rule my life ....I do have to say finding this site where I know I am understood by all my peers was one of joys of my life.... I thank you all for the rawness of your shares....the truth we can speak to each other....hugs to all Laura

[JerseyBoy]

Welcome Jeffy

I find it interesting how you can walk assisted but you have no motor function in one hand. I've never seen/heard of a high functioning level quad lk yourself who still has complete paralysis.