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Thread: 19 Year Old Nephew C6 C7 Complete

  1. #51
    think of Jackson as the Vatican city in which the Miami Project is a part of.
    C3-C4 complete quad
    since 1/2004
    "I don't fear death, only the method of dying"

  2. #52
    Got 'cha. I visited Nick today at "Vatican City." The whole family was there. Nick has so many people that care about him. He's very lucky.

    I heard that the Miami Project doesn't see SCI patients until a year after injury. Did I hear that right?

    I told Nick about this chat room, and he's very interested. They have wireless at Jackson and he is suppose to get a laptop that is easier to use tomorrow. I plan on visiting again later this week, so I'll hook him up.

  3. #53
    Good to hear there is progress. He will be fine. A strong and healthy young man will do amazing things.

    The most important thing to me while I was there was family time. It was a huge deal to me. If you can, go over to the Miami Project and see what that is all about. Also, talk to people who have been on wheelchairs for a while, this helped me grind through all the confusion. Therapists there are excellent, but the people that actually have lived through it will be able to teach tips and techniques not taught in rehab, real life things. I learned to appreciate that as bad as things seemed, there was always someone fighting really hard to go through an even harder situation.

    Keep us posted and if there is anything you would like to know, please ask.

    Another thing, an outside meal here and there was always welcome. Hospital food can get old real quick. The cafeteria is not so bad, and there are a few cafe´s and restaurants in a small shopping center across the street.

    Quote Originally Posted by AuntLore
    I talked to Nick last night and he is amazing! What a great attitude. He's used to training hard for motocross and he's going to train even harder toward recovery. He's in such good shape and so strong, I know he'll do well. He should be going to Jackson today (we've learned everything is subject to change), and he, and the whole family, are ready.

    I live about an hour away, which will make it much easier to visit. I'm trying to think of things I could get for Nick that might be of use to him. I've thought of an IPod and DVDs, can you suggest anything else for someone with such a recent injury ... two weeks today.

    Thanks!

    Lore
    T6 complete (or so I think), SCI since September 21, 2003

  4. #54
    Lore,

    I would wait on sticks for him. Hes still a fresh injury and he'll still gain function most of the C6-7 guys on my rugby team have finger function. Also Velcro shoes maybe fine for him for now but he'll learn how to tie laces hes 20 and there are no cool velcro shoes if you know what i mean. I'll be down that way in January for a rugby tourney maybe me and some of the guys will visit him if you guys dont mind. I know when I was in rehab i had a few of them come by and talk with me and it helped me a ton.

    Also if he wants to watch a good movie get him Murderball its a documentary on quad rugby but shows everyday life things. I enjoyed it especially after some of the depressing outdated videos they show you in rehab.
    Steve
    C5-6 Feb 05

  5. #55
    Quote Originally Posted by paramoto
    Good to hear there is progress. He will be fine. A strong and healthy young man will do amazing things.

    The most important thing to me while I was there was family time. It was a huge deal to me. If you can, go over to the Miami Project and see what that is all about. Also, talk to people who have been on wheelchairs for a while, this helped me grind through all the confusion. Therapists there are excellent, but the people that actually have lived through it will be able to teach tips and techniques not taught in rehab, real life things. I learned to appreciate that as bad as things seemed, there was always someone fighting really hard to go through an even harder situation.

    Keep us posted and if there is anything you would like to know, please ask.

    Another thing, an outside meal here and there was always welcome. Hospital food can get old real quick. The cafeteria is not so bad, and there are a few cafe´s and restaurants in a small shopping center across the street.
    Your message makes me feel a lot better. The atmosphere at Jackson was depressing, not in Nick's room (which was full of family and friends), but the hallways. I do need to visit the Miami Project, soon, and talk to people who have been there.

    His birthday is next Monday. He'll be 20. I'm going to take in chocolate fondue and strawberries with whip cream (his favorite). I plan on visiting often and bought him an IPod today engraved with his name and racing number (#451) for his birthday. He's made it clear he doesn't like the hospital food. My sister is bringing in outside food whenever possible.

    He's got a pressure sore and apparently half of his diaphram isn't working causing a lung to collapse, but the PT techs think, with work, he can regain more use of his diaphram. They'll start in earnest once the pressure sore heals. I can't believe how quickly that came up.

    Thanks for your support. And thanks to everyone who has sent Nick a message on his Website (www.nickdepalo.com). Next time I go in, I'll get him started on this site.

  6. #56
    Quote Originally Posted by MotoRacer598
    Lore,

    I would wait on sticks for him. Hes still a fresh injury and he'll still gain function most of the C6-7 guys on my rugby team have finger function. Also Velcro shoes maybe fine for him for now but he'll learn how to tie laces hes 20 and there are no cool velcro shoes if you know what i mean. I'll be down that way in January for a rugby tourney maybe me and some of the guys will visit him if you guys dont mind. I know when I was in rehab i had a few of them come by and talk with me and it helped me a ton.

    Also if he wants to watch a good movie get him Murderball its a documentary on quad rugby but shows everyday life things. I enjoyed it especially after some of the depressing outdated videos they show you in rehab.
    I hope you are right about the finger function. That would be huge! His fingers were tingling right after the accident (I don't know about now.). The doctors said they were hoping with therapy he would regain some function. I agree, waiting on the sticks is the way to go -- let's encourage him to use his fingers first.

    Absolutely, come visit him. Let me know when and I'll try to be there, too. He loves company! That would be fantastic!

    I mentioned the Velcro shoes yesterday and he had exactly your reaction. He's not willing to sacrifice style for Velcro. He's way too cool for that.

    Somebody already gave him Murderball. I'd like to see it, too.

    There are so many incredible people who have shown what can be done after a SCI. I can't imagine not knowing that right now.

  7. #57
    AuntLore,

    I am sorry to hear about Nick, but glad that he is making progress. I also developed a sore early on, it is very important that they turn him every 3 hours to prevent anymore. Also be aware of a condition common to SCI, Hedeotropic Calcification "HO". What it is is calcium deposits (build up) on the hips which hinders the hip joint from moving freely. It can happen to other joints but is more common in the hips. I developed this within the first 3 monhs of my injury. It can be prevented with a drug called Didrenol, I unfortunately was not given it early enough to prevent and it has caused me many problems down the road.

    Family andd friends are the best, that is what kept me, and continues to keep me going.


    Wish Nick the best of luck, I will keep him in my prayers.

    Riz,
    C-5 incomplete

  8. #58
    Senior Member
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    Yes, Do look out for pressure sores, I know, I had them, but I was in a coma for 6-8 weeks. They tried to fix them in the first place I was in, and not much happened in the second, I also developedd blood clots in both legs, even though they weren't injured. Between the clots and the sores it set me back, when I came home I was sent to a wound center and they got cleared up realy easy with a triple antibiotic solution twice a day. Makes me wonder why they where never treated this way to begin with. As for velcro shoes I used them for a year and a half, sneakers, they didn't look that bad, except the dog hair would stop them from strapping down. He'll have to make a decision style or function? His call, more power to him if he can tie them, but I definitly think motorcycle boots are out of the question, my feet were big for two years!!!!!! look out for swollen legs, that is a sure sign of clots, the even get a little red, and no it's not a sign of healthy legs, that was my excuse, I lost.

    Best of luck to your nephew

  9. #59
    Quote Originally Posted by Riz
    AuntLore,

    I am sorry to hear about Nick, but glad that he is making progress. I also developed a sore early on, it is very important that they turn him every 3 hours to prevent anymore. Also be aware of a condition common to SCI, Hedeotropic Calcification "HO". What it is is calcium deposits (build up) on the hips which hinders the hip joint from moving freely. It can happen to other joints but is more common in the hips. I developed this within the first 3 monhs of my injury. It can be prevented with a drug called Didrenol, I unfortunately was not given it early enough to prevent and it has caused me many problems down the road.

    Family andd friends are the best, that is what kept me, and continues to keep me going.


    Wish Nick the best of luck, I will keep him in my prayers.

    Riz,
    C-5 incomplete
    I hadn't heard of HO. I will make sure Nick gets Didrenal. Sounds like a little prevention is the way to go. Thanks.

    Nick's got so many people pulling for him. He's always been a social guy, and he loves having his family around. His room is overflowing with visitors, which he loves.

    Thank you.

  10. #60
    If he can figure out how to wear the shoes he likes, by all means he ought to wear them! To this day shoes are my biggest clothing problem. I don't wear velcro ones either, but I would have at first if I'd had some. I hated waiting for people to dress and undress me. Style wasn't an issue for me in rehab, but I was 40 and already out of style. Hard to be cool in diapers anyway. I remember when I graduated from diapers and my roommate said "Oh, I want panties too! Beth has panties!" It was sad LOL. 2 women in their 40's, wanting big-girl undies!


    The Ipod sounds great, cool idea getting it engraved, I think I'll do that to my son's too!

    I honestly don't know one c6-7 that uses typing sticks. At worst we use our thumb knuckles. I use index finger and thumb on one hand, thumb knuckle on the other, type twice as fast as my AB brother.

    It SUCKS that he got a pressure sore! Where is it? They set more people back in rehab than all other things combined, I bet. He needs to take responsibility, insist on being turned if it isn't getting done. They need to teach ppl that 1st day out of ICU. (I got to rehab w/ one and didn't have a clue what they were talking about. Happens ALL the time.)
    Last edited by betheny; 12-11-2006 at 07:50 PM.

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