New T5 incomplete (s2klisa)

[s2klisa]

I found this site while looking for resources for a friend. My 22 year old son's best friend, (also 22), was injured in a car accident 3/29/03.He shattered T4 and T5 and is considered to have a diagnosis of T5 incomplete, I believe. Please correct me if my vernacular is incorrect. This is all very new to us. I have so many questions, I'm not sure where to start. I have always thought that the best teachers were those that had already been there so am looking to this forum for some guidance. I guess first and foremost I'd welcome some pearls of wisdom around the first few months after discharge from rehab. What should we look for, expect, demand,anticipate.
What I'm sensing is:
a) he is depressed, duh!
b) his friends are talking about when he get's "better"
c) his bio family seems numb
d) aftercare programs seem to be non-existent
e) any sort of clinical trial or wellness therapy requires at least a 12 month post injury time lag
Any info. shared would be most appreciated!
Thanks for being here!
s2klisa
Originally posted by glace:

on september 28th/2002 my 17 years old son jordan was shot and robbed.
the bullet severed his spinal cord at the T4-5 level.
he was treated at sunnybrook and was hospitalized there for 7 weeks and after spent another 10 weeks at lyndhurst sci rehab in toronto.
that sunday morning and the following 72 hours after i arrived to the hospital are kind of blurry. i remember as soon as i walked in to the cicu unit there were this doctors telling me about the extend of his injuries how he might not survive and if he makes it thru the day he might still loose one of his lungs, since the bullet also went thru his right lung and of course the fact that he is paralized from his chest down and he will never walk again.
he was concius all the time and all he wanted is for me to hold his hand. i remember looking at him as he was all swollen and tubes sticking out all over and i kept on thinking "how could someone do this to my baby".
i could feel his bed shaking from every heart beat as he was fighting for his life.
time passed,he had gotten better and as he became more alert the severety started to sink in. we spent many days crying and i was left with the task of trying to explain, comfort and assure that his life is not over, i was also falling apart, but at the same time i also needed to convince my self of the same.
it has been almost 8 moths and as his mother i honestly cannot say that i will ever be better or will come to terms with what happened to him.
i guess(hope)i will be able to do so to a certain degree once i see that he has found peace within and happines.
for a while he/we kept on hoping that the doctors maybe wrong,i would have been happy with incomplete from complete. he often said to me that he don't so much care about not being able to walk, but he just wishes he could feel his body again.
i guess life goes on, we do what we have to and never give up hope that some day there will be no more politics and greed in the way of spinal cord regeneration and that someone out there will come up with those missing links that prevents the full recovery of all sci injuries.

[SCI-Nurse]

Moving this rely to a different thread to create its own topic.
I found this site while looking for resources for a friend. My 22 year old son's best friend, (also 22), was injured in a car accident 3/29/03.He shattered T4 and T5 and is considered to have a diagnosis of T5 incomplete, I believe. Please correct me if my vernacular is incorrect. This is all very new to us. I have so many questions, I'm not sure where to start. I have always thought that the best teachers were those that had already been there so am looking to this forum for some guidance. I guess first and foremost I'd welcome some pearls of wisdom around the first few months after discharge from rehab. What should we look for, expect, demand,anticipate.
What I'm sensing is:
a) he is depressed, duh!
b) his friends are talking about when he get's "better"
c) his bio family seems numb
d) aftercare programs seem to be non-existent
e) any sort of clinical trial or wellness therapy requires at least a 12 month post injury time lag
Any info. shared would be most appreciated!
Thanks for being here!
s2klisa
(KLD)

[This message was edited by Wise Young on 05-21-03 at 01:49 PM.]

[SCI-Nurse]

Where is this young man (part of the country)? Did he go to a SCI rehabilitation program (specialty, not just general rehab)?

What is his insurance situation?

What services, if any, is he getting right now as an outpatient (PT, OT, Social Work, psychology, voc rehab, etc.)?

Does he have a SCI specialty physician?

Can he get on-line here?

(KLD)

[Wise Young]

s2klisa,

Depression is of course common in people with spinal cord injury during the months that follow spinal cord injury but it need not be severe nor destructive. In my observations of people after spinal cord injury, there appears to be three patterns:

1. Denial. This sometimes happens in the initial stages of spinal cord injury. Although the person may seem to have accepted the concept that he/she had serious spinal cord injury, inadvertent statements may slip out indicating that the reality of spinal cord injury has not yet become a part of the person's emotions and thinking. For example, a person may be planning on wrestling or playing on the baseball team next year, or other physical activities that are not realistic. Note that denial differs from lapses of acceptance. Many people dream of walking or running. Almost everybody hopes for recovery, even miraculous. Some doctors and nurses interpret hopes and dreams as being part of the denial process and try to discourage them. I think that it is important for people to have hope and aspirations for recovery, that it is healthy and good for people to have hope. However when hope is unrealistic and interferes with learning how to deal with the problems of today, it is very important for the person to understand the reality of spinal cord injury and the fact that recovery is slow and may be limited, and that they must work hard to maximize their recovery.

2. Sadness and grieving. Spinal cord injury deprives a person of function below the injury site. While life is not lost, life has changed and will change more than most people can imagine because of the spinal cord injury. It is natural for the person to mourn the loss. It is natural and okay for family and friends to mourn the loss. Many families are afraid to talk to the person about the spinal cord injury and present a falsely bright and cheery attitude as if the spinal cord injury did not occur or to assure the person that everything will be okay. Communication and support is very important.

3. Depression. Depression is when a person has serious trouble coping and has strong emotions concerning the spinal cord injury. Depression with anger is common, particularly in people who were injured but through no other fault of their own. They may have trouble sleeping, have low levels of motivation to work on their rehabilitation, and avoid communications with other people. They may "act" out their depression and anger, alternating between the two, and sometimes may appear to be uncaring and callous to caretakers. The duration of depression and anger differ tremendously from person to person. Self-esteem may be low. Many studies have shown that strong and consistent family support is crucial to recovery from this emotional response to spinal cord injury.

The difficult task for both the family and the person with spinal cord injury is balancing reality and hope. The reality is that spinal cord injury is a devastating problem. Recovery may take years and may be limited without availability of therapies. Spinal cord injury will cause a drastic shift of lifestyle both for the person and the family. Many previously made plans and aspirations will have to be postponed. Complications may occur, including infections, pain, spasticity, decubiti, and autonomic dysreflexia.

However, the reality is also that most people with spinal cord injury will recover some function after injury. Most people will get at least one or two levels of motor and sensory function below the injury site, particularly if they had received methylprednisolone. If the person has even slight motor or sensory function below the injury site within the first day or so after injury, the likelihood of substantial recovery is high. Approximately half of people with so-called "incomplete" spinal cord injury will recover walking. Many people continue to recover many years after injury. Sexual function and ability to have children is not ruled out by spinal cord injury. Exercise can markedly improve function, even years after injury. Many of the complications of spinal cord injury can be prevented or minimized. Life goes on.

In my opinion, hope is essential and need not interfere with reality. There are therapies that restore function. Although they are not currently effective for everybody, there will be more and better therapies. Much can be done in the meantime to ensure that the person is prepared to take advantage of future therapies.

Finally, it is important that the person does not neglect the most important part of his/her body: the brain. Education is the best predictor of quality of life and recovery after spinal cord injury. Employment is also a good predictor. Finally, wealth helps reduce disability. Spinal cord injury can be conquered. The key is not to let it conquer.

Wise.

[kate]

The need for bottomless patience, a sense of humor, and lots of time on this site . . .

My husband shattered c-6 on 3/7/01 and came home exactly two years ago today. Hard as the hospital had been, I think for all of us (we have 2 kids) the first few months at home were worse. By the end of that summer, many things had settled down, and we reached a sort of equilibrium--like a platform that seemed stable enough to hold us and let us find our way forward.

Based on our experience, I'd tell anyone about to go home to move heaven and earth to get a competent physical therapist involved as soon as possible. Nothing is worse than feeling that there's no way to change anything; nothing is more encouraging than seeing that effort pays off--and I don't mean that return is guaranteed, but that, at T-5, your friend's son has plenty of function to maximize, even without further recovery. But it's very hard to guess at what exercises will be useful without a professional's advice, or at least I know we couldn't have done it.

Hope this helps--email us if you like, and good luck.

Kate