Trying to help a newly para with his situation

[WetDad]

My 21 year old nephew has been in the hospital for two weeks now, and has lost all feeling from the navel down. He has been amazingly strong about his new life in a wheelchair, and is excited to help design his titanium wheels. Maybe more than he should be. I'm not sure about that, because I have only visited him with others, so I haven't had a chance to visit one on one yet.

I don't want to get into a long discussion analyzing his condition, so I won't go into details. While I can help him with the diaper thing, I am mostly clueless about the whole transition from legs to wheels. Has anyone here been through that, and what advice can you offer?

[PB&J32]

Are you even sure he's incontinent? Some people remain their continence. Further still some people don't ever get the sensation to void and end up using intermittent catheterization or foleys to drain.

[WetDad]

That's what his mom says, and I have never doubted my sister on medical issues. Both bowel and urinary in his case. We have been getting some rather odd advice from another neurologist we know. So I really need to talk to someone who has been through this transition. I need the personal perspective if possible.

[Wetters]

WetDad, I'm sorry to learn of your nephew's new challenge. I don't have day-to-day practical advice, because after my stroke, I was in a wheelchair just briefly. I think it would be of great help to him for you to be his team member and cheer squad - to encourage him and help him embrace all of the resources that his treatment team and the community have to offer.

Wetters

[tangerine]

Is he being referred to a rehab centre? Usually when people have a spinal cord injury they will have intense rehabilitation. There are other instances where paralysis can happen though and unfortunately people just get left. A friend of mine has near total paralysis of his legs with uncertain cause. In his case he has so many health problems that I think it is hard to discern what is causing it. Sadly that means hr was just left to his own devices. Where are you based,? In the UK I have heard great things about the back up trust who help people with the practical social and emotional aspects of paralysis.

[B Brian]

I guess like you I can only offer a little advice and support on that. I was only in a wheel chair for three months before I was finally able to upgrade to a walker as I re-learned to walk again. Then crutches, and now just my cane.

It's really good your nephew is taking this positively though so don't question it too much. Just be as supportive as you can and give him your best diapering advice.

Do tell him about wheel chair racing though. Even in my bad days, a quick zip around the hospital complex at night always cheered me up.

[mlhjr]

I work with a guy who is paralyzed from the waist down and has to intermittent cath every three to for hours. He also has a great out look on keeping going. He has been a great help to me, he said it is worth all the struggle just to have one more laugh. He also said keep to it lite and always try to laugh at any and all accident or mishaps that come along. He make all my life's struggles seem easy compared to his. You are awesome for stepping in to help him. Laugh and cry with him, like here let him know he isn't alone. Tell him we are all pulling for a great come back.

[WetDad]

I forgot to update y'all about him. His leg muscles are starting to respond again. His PT has him walking with a walker, though his feeling hasn't returned much yet. Dunno about his ic.

[Wetters]

WetDad, I'm happy to hear that your nephew is improving.

Wetters

[Patrick]

That is great news. If you get the opportunity, tell him he has a great cheering section here.