20 replies to this topic

[LisaLisa]

I am new to this forum and have been a physical therapist at a Level 1 trauma hospital for the better part of ten years. I found this website while searching the internet in hopes of finding some information to better help me serve the many spinal cord injured patients I see on a day to day basis. My concerns are not exactly treatment related (although I am always open to ideas and suggestions). My interst lies more in the psychological and educational needs of my patients in the first days/weeks after their injury. I guess what I want to know is- what and how much information were you able to handle while in the hospital? What could have been handled differently? Did you receive any type of counseling? Were you provided with information about support groups etc.?
Any feedback is greatly appreciated as I feel this is an area that is greatly ignored at the facility where I work and I would really like to hear your experiences from a patients point of view.
THANK YOU!

[hillarymcarter]

My husband and I did not receive a lot of good counseling. We expected to get couples counseling to help to understand what the future would be like. We were kind of just sent home to figure it out for ourselves. As far as the sex education went it was pathetic...it scared us more than anything! Something that helped him a lot was group activities and education with the other spinal cord patients. I wish they would have made sure we were set up with a support group or therapist once we got home.

[Joed]

Hi LisaLisa...

I did receive the mandatory visit from the rehab psychologist while I was there. She assessed that I wasn't showing any depression, although I was missing my young son terribly, and could hardly bear to even talk about him to anyone without crying. Later, upon my return home, my in-home therapists continued to evaluate me for depression at each visit, per their policy.

I agree with Hillary, in that I wish we had been provided family or marriage counseling. I'm two years post-injury, and we have our first appt. with a marriage counselor this week. It's been a difficult two years...physically, I'm encouraged, but the toll on my marriage cannot be denied. Roles and expectations change, and it's difficult to work through that solo.

I found support through understanding family members and friends, but I think the greatest source of support came from spinal-related message boards like this one. I'm convinced that my recovery would have been much slower if not for the emotional support and good info I received from other people with cord injuries.

[LisaLisa]

Thank you both so much for your reply. Hillary, I was just wondering how you found the counseler you are planning to see and does he or she specialize in couples with traumatic injuries? Joed-you said you had the mandatory visit from the rehab psychologist, we have NO form of counseling offered to the patients at the facility where I work. Basically, the only form of counseling my patients receive is from the general staff (and you certainely can not call this counseling)- and ONLY IF the patient expresses sucidial thoughts or basically tells his or her DR that he or she is depressed will they receive a visit from our general psych team who in no way addresses their SCI. I would love more info on when the rehab psychologist and how soon were you put in contact with this person?

[carolline]

Hi LISA it's nice to join you here!
I guess you will be a big help here on this site.
I will refer you to my friend,whose seeking a help about his spasticity.
And having a knowledge in Physiotheraphy,can you teach him some excersise
for his muscle spasm.
Thank you very much.

[hillarymcarter]

Joed- How long were you married before your injury? My husband and I had just been married for 5 months so it's been pretty tough. I guess you could say I was one of those girls who couldn't really do anything for herself so my husband did it for me. When you said roles and expectations change I started crying because that is so true. I've toughened up (a little!) and I hope things get a little bit more normal as we progress. My husband gets really upset with me when I can't do something like kill a bug or something small that he used to do for me. We were in the hospital for six months and we just got home two months ago. Being two years out and married is there any advice you could give me as a wife to be more supportive. I try sooooo... hard but I can never understand what he is going through. Thanks so much!

[hillarymcarter]

I also wish I could find more info on therapists around my area who deal with stuff like this. My husband and I are fine as long as we are just with each other. As soon as you throw anyone else into the equation (family especially) it seems like all hell breaks loose. Did anybody else have these problems? It is getting difficult to balance others emotions while I am only concerned with my husbands.

[Joed]

Hillary...

We were married 14 years when I had my main injury. But I've had a cord condition from birth, so we had dealt with some of the issues all along, but this time has been difficult. I think some of our problems stem from my injury, but many are problems that were already there...the injury just exacerbated them and brought them to the forefront.

I was always the one to 'get things done'. I run the show, basically, and when I was no longer able to do everything like I used to, things began to deteriorate. I've never been one to ask for help...or at least it doesn't come easy to me...but now I have some realities that cannot be ignored. It's just a matter of getting everyone on the 'same page', so to speak.

I feel like I've accepted these new turn of events fairly well, but my husband seems to be the one in denial, or so it seems to me. (Now, if I can just get the marriage counselor to agree with me. )

[hillarymcarter]

My husband and I are the opposite. He has no problem asking for help and I can not do it. I won't even go to a doctor if I'm hurt now! We'll be in a parking lot at a restaurant and he will ask a stranger to help me put his wheelchair in the back of our SUV.....it drives me nuts! I know I may need help but I don't like anybody else to know that!!!!

[AHolland]

I guess I'll throw in my two bits here.

I was married for 12 years prior to my accident in a traditional setting. However we are quite different in my wife comming from a very blue collar farming background and I from a very academic family. Still, the differences worked for us.

I found a lot of the education and therapy at the Canadian hospital to be poor. It was well meaning, but they continually worked to tell me what to do, rather than give me the information I needed to do it for myself. They tried to take all decisions on my future life out of my control and that really upset me a lot. It upset me because they were not making good decisions but were completely willing to fire me out the door and say adios washing their hands of me.

There was a lot of little seminars that tried to teach us what to expect, but they lumped us all together and said..this is the answer... If it is one thing I have learned, it is that we are all very different and what works for one of us, seldomly works for another. The people really need to teach people how to search for answers and how to develop skills.

I also found that the people in the hospital (I was there for 6 months) acted like we could not handle the situation, and sheltered us from the realities of the situation which I found harmfull. As bad as it is, give us the information and then help us work through the problem. Don't just avoid the situation/question.

I basically had to learn most of what I know after I left the hospital and on my own.

My wife has developed quite well through our times learning some new strengths that she probably did'nt know she had. I have to remember to tell her that time to time as we would not be doing as well without her efforts. She has gone from the shy little farm girl to a fairly strong person, while I have naturally stepped aback a bit.

I know that it is often hard for a handicapped person to do a lot for themselves, but it is becomming increasingly obvious to me that unless the handicapped person does as much of the dirty work themselves that it can impact the relationship negatively. That means cleaning out leg bags, night bags, dealing with bowel accidents and the like. It is'nt easy, but you can deal with that and keep a spouse, or get them to help you and possibly lose a spouse. It's the sad reality that some people just can't handle cleaning up messes as much as they say they don't mind it. I've seen too many relationships go south because of the demands placed on the healthy spouse by the handicapped one.

[hillarymcarter]

I actually love to take care of my husband. One of the hard things on me right now is that he is learning to become more independent and I feel like I don't fit anymore. I guess I am just now dealing with everything because in the past 8 months I've been super busy taking care of him. I am starting a book right now (a REAL book) on how a healthy spouse can expect to feel after an accident. I say a REAL book because I am holding nothing back. After my husband's accident I would read "idealistic" books on how stuff will be and it pissed me off when it didn't happen that way or when I wasn't happy all the time like I was should be!

On a totally different subject, I need some advice on family. How long does it take for family to quit treating you like you are sick. I know there is no real answer to this question but can I get some input? It feels like my husbands family is constantly reminding him that he is sick. They will even call him everyday and ask him if he has gotten any feeling in his legs. Is it helpful to be as optimistic as them? I feel like that is just a case of deep denial. At the same time I don't want him to feel like I am giving up hope that he will get something back. I just want him to know that I will be fine with him either way. Can I get some advice please???

[carolline]

Hi Hillary

I admired you the way you taking care of your husband.
Do'nt lose hope,coz your husband needs your strength.
About your problem,you need to have a counselling together with his family.
On how to treat your husband as a normal person.

Hope you will find an answer to yopur problem.
Be strong and Have faith.

[LisaLisa]

Thank you all so much for your input. AHolland, you mentioned that while in the hospital everyone tried to protect you and pretty much danced around the issue instead of giving you the information you needed. This is where I really struggle. I am continually torn when it comes to telling my patients the truth about their SCI. In fact, many times as I am first starting to work with a patient I realize that no one has even mentioned to them that they may in fact be paralyzed (not even their DR)- or at least that is how it often seems. It seems vary taboo at the facility where I work to actually talk openly about spinal cord injuries to the patients and their families, instead we tend to "protect" them from much of the information we have. And to be honest, I feel like most of my patients are so scared and confused that they don't ask any questions, are they ready to talk about their situation or do they need time to deal with everything on their own? I have always felt that if I were in that situation I would want to learn as much as possible as soon as possible- but I realize that I have NO UNDERSTANDING of what it feels like to be on the receiving end of the information. I sincerely hope that I am not out of bounds so to speak by participating in this forum from a clinicians standpoint, I just have no other way of getting peoples opinions about this.

[AHolland]

I think this forum is an excellent way to get the information you need. We are all different and you will get different opinions. That is the great thing about it. Some may agree with me, some won't because we all go through different circumstances and deal with the issue differently. At least here you will talk to real people with real issues and get straight answers, not "theoretical" ones.

I guess the biggest risk I see in telling your patients about their SCI is two fold. SCI is a major hit in a lot of peoples life. For a lot of us, it hits us on a deep physological level and it is dangerous to be the one that lays it on them. It should really be done by a doctor or psycologist. Learning that you will be restricted to a wheelchair for life can be a touchy thing. Some people like myself just want the information so I can go ahead and deal with the situation. Some need it given in small doses so they can absorb the impact.

On a second level, once you start telling them about their condition, are you ready for the questions they will have. "Will I ever walk again?" "Will I regain control of my bowels? Etc. We are so different that all you can give is the "average" answer. People grab onto hope and that can be a dangerous thing (and a good thing). You and the doctors simply do not know what the real answer will be. I have not idea if I will ever walk again, neither do they. You may find that a patient listens to part of what you say, but ignores the rest. It may be risky in your job to have a doctor walk up to you and say, "why did you tell Mrs. John Doe that she may never walk again." You could lose a job over a good intent.

I guess what I am rambling about here is that people are different. Figure out what the patient wants and give them any safe information you can. Hey, point them here so they can ask their own questions.

[hillarymcarter]

My husband's Dr. in trauma did not tell me that he was paralyzed. I learned that he was paralyzed 2 months after his accident when one of his Doctors accidentally slipped and said something. If someone had sat down with me and told me what was going on it would have been a lot less traumatic than hearing it "by accident". I am the one who told my husband the news and he says that he would have it no other way. He said he could not have handled that kind of news from anybody else.
True, everybody is different so I am telling you of my experience. I appreciated when the doctors were up front with me and told me what was going on. I do not think I would appreciate it if anyone else but a Dr. had told me. My hubby had one nurse who told me he was going to be retarded...........first of all, not true......second of all, not her job to tell me that kind of news........last of all, she got fired. My point....It is not a therapists or a nurses job to break that kind of news.

[carolline]

You're right Hillary!
How come that His Doctor did'nt inform the situation of your husband.And its been a long time,that accidentally you heard whats happenning to your husband.The doctor should inform you about the situation of your husband,coz your wife the important member of His Family.And it's your rights to know His situation.
It's unfair,just to wait what will be the progress of your husband.Which is you really dont know whats the status of your husband.I'm not telling that I'm BRIGHT That Doctor should read again the MEDICAL Code of ETHICS.

I'm sorry to hear that
Keep it up Lady Soldier!

[AHolland]

I will be a little caustic here in saying that a lot of the medical profession treat information as if it is only theirs to hold and disperse. I can see no reason to hold back information from a patient. After all, it's our life and it is unfair to be holding secrets from us. A doctor that does not tell the patient tht he is paralysed should be shot. It is one of the things that got me really mad as an SCI patient is that I was kept in the dark and no one would tell me what is going on. Later, they fire you out the door and say..Figure it out for yourself.

understandably, some patients can absorb the information faster than others, but if a patient asks for the information then there is an obligation to give him all that a doctor knows. If there is uncertainty about a condition, then just say so. It makes it much harder to go on with life when you have to gleam information from vague sources all because someone is too worried about who should say it. it is really the doctors responsibility as he/she is in the best position to answer questions and privy to the most information. I do not think the nurses should be givng out the information for thosre reasons., not because they don't care, or know some of the details.

[scruffyg]

Im 7 months post injury, my memory for the first few months is still crystal clear, as much as everyone is different, this is something that I feel very very strongly about. To help I'll just fill you in on my circumstances. December 8th 2004, motorcycle accident, complete T11/12, no other injurys. cord severed (well about 95%). I'm male, 30, was in a relationship at the time of my accident, have no kids but allways figured i'd have a family.

I was told as soon as I woke up after surgery that I would probably never walk again, it was about 10 days later when i found out that what they meant by "probably" was that currently medical science is not up to the job of fixing me. I was kept in bed for a month in a brace (suspect crack in T 4) and during this time I was trying to get my head arround my future, at this point very little information was making its way to me, I had no idea what it meant to be in a chair for good and I also was trying to understand how anyone could get on with things when they had to deal with the likes of bowl and bladder (s.i.c.) on a daily basis. when i finally got out of the bed I was horrified at how difficult it was to do anything......Here is where it gets interesting.

At this point in time things that would have made a big difference to me would have been to see people who were living their lives in a chair rather than only getting to see fellow patients who were obviously not doing too great. I needed role models not sick people around me. I was treated like a china doll, this made me feel fragile. thankfully my girlfriend (at the time) is a doctor and she helped me understand my situstion, I got a laptop and a wireless connection and spent a few hours a day on the net looking into all aspectsof my situation, yes the informatin was scarry but in the end I needed to know what the deal was, it has helped me greatly that I knew the truth early on, it meant that when I was discharged i wasnt facing even more surprises apart from the obvious. The truth only gets harder to swallow if you have been avoiding it. we are capable of adjusting to amazing things, discussing H.O., disreflexia, OsteoP, pressure sores, renal failure, sexual potential, nerve pain, social interaction, body functions.. etc are all things that are better understood while you are in the early stages of rehab when everything is up in the air and you have the support of professionals should you start to loose the plot. its just how I feel, but knowledge is power afterall.

I Dunno of thats any help, it's great that you are even thinking about it.

Feel free to ask me anything if you think I can help.

grahambolger@mac.com

[pierre]

hallo para-tetra
I'm knew in this forum i'm a para t5 complete for the past 2,5 year
and i've been in this contry for 2 years i always been searching the french
web who have a lot of info about researsh i would like to know how i can
share those info with this forum to have more info please advice
if i;m not in the right site let me know where to go
my name is pierre e-mail hhervee@hotmail.com
sorry for my english
regards