Results 1 to 10 of 10

Thread: My Advice for New SCI

  1. #1

    My Advice for New SCI

    My husband sustained a spinal cord injury almost 2 years ago. I have been reviewing this forum for almost two years and have found it quite informative. I have not posted until now because I did not feel that I had the experience to do so, but now I have.
    If your loved one has been injured and you are here, you are in the battle for your loved ones life. Pull up your big girl or boy panties, be strong, be focused and most of all be POSITIVE.
    I have Three Rules that have gotten me through this experience... And I still use them to this day.
    1) DON'T GO LOOKING FOR BAD NEWS. By far.... The most important rule. Trust me... If there is bad news.. The doctors will find you.
    2) THE TISSUE. When the doctor finds you and he doesn't give you a tissue BEFORE he talks to you ...it's all good. P.S. I haven't got a tissue from a doctor still to this day.
    3) ASIA Score DON'T GET INTO THAT..... Almost two years post the SCI injury and I still don't know what my husbands "score" was or is now. What does it matter? REMEMBER the strongest muscle in the human body is the brain or the mind....and your loved one's sheer determination.... do yourself a favor and don't let anyone score your loved one and tell you that they will never be "able to do that."
    Stay focused and keep your eye on the prize.. Your loved one, their comfort, their spirit, their physical well being......STAY STRONG AND FIGHT because I am here to tell you that you will win!

  2. #2
    Senior Member
    Join Date
    Apr 2010
    Location
    Rochester, NY
    Posts
    3,864
    very good advice, especially on the ASIA score. i have never had an ASIA score, never will have it done. been paralyzed for 28yrs in may and such a number has never been needed in my life. do your best at recovery, stay focused and get back to enjoying life in whatever capacity you can. and to all the spouses there going through this journey, ty for staying true to your vows!
    "Smells like death in a bucket of chicken!"
    http://www.elportavoz.com/

  3. #3
    You sound like a strong woman and one who has good morals and ethics. So many people in today's society simply just walk away from situations like SCI when their loved one is injured (well unless there is a large settlement involved or something) The day's I think of people truely caring for one another have grown very limited, most people are just out for number one these days unfortunately.
    "Life is about how you
    respond to not only the
    challenges you're dealt but
    the challenges you seek...If
    you have no goals, no
    mountains to climb, your
    soul dies".~Liz Fordred

  4. #4
    Nice! It is an extreme experience but the individual will seek the battle ground and fight.

  5. #5
    He had a motorcycle wreck. No other vehicle involved. The riders behind him think it may have been a mechanical problem or something just as stupid as a rock on the road. He went down and slid across the road. He had a bad abrasion above his left ear, just about tore his left ear off, huge gash on the left side of his forehead, occipital condoyle fracture, stable C-1 fracture with ligament injury, commuted scapular fracture, six broken ribs and a lacerated spleen. He was not wearing a helmet nor a shirt! We have been married for almost twenty years, and yes I took my vows seriously.
    The only money here is the money that is going out the door. The day this happened, I formulated a plan for his recovery. I decided that I would manage his recovery like a business. Fortunately he was airlifted to a Level 1 Trauma center and arrived 40 minutes after he was hurt so that was good. He entered ICU in stable condition. He had an awesome team of doctors and nurses, so I decided that I too needed a team. I gathered a few close friends and gave them jobs. Probably the most valuable job I gave to a dear friend of mine was "Communications Director" he communicated with all of our friends that were calling my cell phone wanting to help. It was very counter productive for me to keep telling the accident story over and over each day, so by turning communications over to him, I was able to focus on my husbands recovery. Then I posted a sign above my husbands head of the bed "No my name is not Bud or Buddy it's Brian please use it." Then I got a picture of us and had another friend blow it up at Walgreens to a 5x7 size and posted it right beside the latex glove dispenser. This fight was personal to me and I wanted to make it personal to his ICU nurses. Then instructed everyone that came into his room not to discuss ANY medical related issues in front of my husband, that was only allowed to addressed with me outside his room. I wanted him to rest and pull his body out of its traumatized state, I knew that if he got scared or upset that would be counterproductive. Then I kept my mouth shut and my ears open and learned as much as I could from the medical team. I played music in the room and constantly told my husband to rest, relax and Concentrate on letting his body repair itself!

  6. #6
    You obviously love your husband very much. Everyone is different I guess, I would never want to be cut out of or delegate my health care decisions to another person unless I was mentally incapacitated.

    Quote Originally Posted by Battlestar View Post
    He had a motorcycle wreck. No other vehicle involved. The riders behind him think it may have been a mechanical problem or something just as stupid as a rock on the road. He went down and slid across the road. He had a bad abrasion above his left ear, just about tore his left ear off, huge gash on the left side of his forehead, occipital condoyle fracture, stable C-1 fracture with ligament injury, commuted scapular fracture, six broken ribs and a lacerated spleen. He was not wearing a helmet nor a shirt! We have been married for almost twenty years, and yes I took my vows seriously.
    The only money here is the money that is going out the door. The day this happened, I formulated a plan for his recovery. I decided that I would manage his recovery like a business. Fortunately he was airlifted to a Level 1 Trauma center and arrived 40 minutes after he was hurt so that was good. He entered ICU in stable condition. He had an awesome team of doctors and nurses, so I decided that I too needed a team. I gathered a few close friends and gave them jobs. Probably the most valuable job I gave to a dear friend of mine was "Communications Director" he communicated with all of our friends that were calling my cell phone wanting to help. It was very counter productive for me to keep telling the accident story over and over each day, so by turning communications over to him, I was able to focus on my husbands recovery. Then I posted a sign above my husbands head of the bed "No my name is not Bud or Buddy it's Brian please use it." Then I got a picture of us and had another friend blow it up at Walgreens to a 5x7 size and posted it right beside the latex glove dispenser. This fight was personal to me and I wanted to make it personal to his ICU nurses. Then instructed everyone that came into his room not to discuss ANY medical related issues in front of my husband, that was only allowed to addressed with me outside his room. I wanted him to rest and pull his body out of its traumatized state, I knew that if he got scared or upset that would be counterproductive. Then I kept my mouth shut and my ears open and learned as much as I could from the medical team. I played music in the room and constantly told my husband to rest, relax and Concentrate on letting his body repair itself!

  7. #7
    He was completely incapacitated for the first three weeks. Once he was able to direct is own care he did.

  8. #8
    Senior Member
    Join Date
    Apr 2010
    Location
    Rochester, NY
    Posts
    3,864
    that was a very good way to handle all of the stress. you did the right thing by your husband!! how is he doing now?
    "Smells like death in a bucket of chicken!"
    http://www.elportavoz.com/

  9. #9
    He is doing well, thanks for asking. His rehab Dr. at TIRR diagnosed him as having central cord syndrome in July 2011, but his neurosurgeon disagreed with that diagnosis. In any event, at this point in his recovery he walking with the aid of a forearm crutch and an AFO type device called a Step-Smart. He has full use of his right arm and hand, weak left tricep and poor extension, and a lot of tone in his left arm and hand. He has come along way from starting off Pre accident at 180 lbs to 138lbs when he got into rehab May 2011. First he had to gain weight, to gain strenght, then he worked on core strenght and then balance, hip extensors, flexors, etc etc. Back in the fall of 2011 we bought an inexpensive recumbent bike and we transferred him onto it and he would pedal it for at least half an hour every day. He did in patient and outpatient PT and OT. I also hired an OT to come to the house 3 time a week and a personal trainer to come to the house 3 times a week. I basically tried to keep the same rehab schedule that he had at TIRR. Bottom line...he works out still to this day at least 5 days a week and he is still gaining. He is still in pain, but has taken himself off Lyrica, Zanaflex and Vallium. I am very proud of how hard he has worked at this. Pretty amazing I think since he will be 65 years old this year! Our retirement fund has taken a serious beating, but that's life!

  10. #10
    Bless you for sticking with him and for reaching out with your very valuable advice to benefit others just starting out with this life.

Similar Threads

  1. My dad's advice
    By peterf in forum Life
    Replies: 3
    Last Post: 06-19-2011, 11:57 AM
  2. Replies: 3
    Last Post: 07-26-2009, 02:43 AM
  3. driving advice/turn signal advice
    By Emi2 in forum Equipment
    Replies: 39
    Last Post: 05-07-2007, 03:22 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •