6 replies to this topic

[hallsim]

Hey i jst want to say i found this forum about weeks ago and i have been stuck on it ever since, so much so that i think my girl is getting sus about me always on the computer...

Where do i start this is my first time post... My name is andrew, im 24 yrs old and live in the beautiful country of australia, 7 months ago on january 26th whilst celebrating australia day i managed to fall 10 meters from a balcony landing on a concrete driveway and as a result broke my back at T8 and completly severed my spinal cord...

I was in royal north shore hospital for a total of 4 weeks i had the op and got the titanium rods and for the first two weeks i had a CFS leak, after hospital i had to go to rehab where i stayed for a further two months and got myself independant with my own care..

I am T5 asia A complete..

Now i have been home(home being a place that is in no way suitable for a wheelchair i cant even get in and out the front door, nor in and out the shower, my beautiful girlfriend every morning holds the warm water over me in the middle of the bathroom floor to shower) for about 4 months i am not on any medication at all i get no pain and very little spasms..

So many questions where to start...

- will ever get rid of this bloody UTI??? This has been my biggest issue since getting home and i jst cant seen to shake it??

- Does anybody feel comfortable in there chair??? they set me up with a new Q7 in rehab and its a great chair although i wish i felt comfortable setting in it.. i am more incliened if just setting round the hosue to take the cusion of and sit on it that way(not long enough to get a pressure area) its like im more comfy, more balanced, more room in between me legs and i can sit at the dinner table without having to sit side on cause my knees wont go under the table when im on my cusion??


- When i am laying down in bed i sleep on a standard mattress i sleep on my back with my feet over the edge of a wedge to protect my heals and i have no need to turn through the nite cause i dont get any pressure areas but the thing that does happen is i will wake up thru the nite sometimes to find that my needs have bent up and my feet are flat on the bed like i am ready to do a sit-up i must be like a spasm or something.. does this happen to anyone eles it drives me crazy i have to wake up and fix my legs again and lay them back over the wedge this seams to be getting worse.... any ideas??

- MILLION DOLLAR QUESTION..... Having a severed spinal cord does that mean that treatments like stem cell would have no chance on working for me cause i have a cap in my spinal cord to fill i dont understand.... sorry if that seems like a stupid question but am very new to this and any advice is muchly appriectated...

Big thanks to apparelyzed you can expect to see alot more of me on this website..

Cheers Andrew.....

Thought i would include this photo to show you my break pritty cool photo ey...

[McRobb]

Welcome to the website that has helped me the most since my accident. I am sure the you will get many answers to your questions from other members who have been doing this longer than I and do a better job answering your questions. But I will start off and do the best that I can.

The first thing that you will be told is that you are very new to this and a SCI takes a long time to learn to live with and to learn what your body will do and not do. They all seem to be unique and different and even the same level of injury will cause different reactions and abilities for each of us. See how unique we all are? I was told to expect it to take 2 years for my body to settle into living like this and I do think it was about that long before I really felt comfortable living like this. It is not easy and things change over time so you have a lot of adjusting to do.

UTI's are something that will plague you always. I don't know if you have permenent cath or if you do the intermitant thing but there are some general things you can do. Drink lots of water, keep everything squeeky clean, don't reuse caths, etc. Others will tell you specific things that work for them. I just really watch my water intake.

Sorry - can't help on your question about new surgeries and breakthroughs but others will know more, especially Simon. Do some searches on your questions on this site and you will be amazed at what you will find.

Hope you can find a place to live that is better suited to your chair - they are hard to find here in the US and I assume other places as well. Hang in there and try not to get discouraged. Your world can be as wide as you choose to make it - just keep on keepin' on.

[pinkcloud]

Hi Andrew, nice to meet you and welcome.

Although I am a fellow 'T-spine' as I call us, my story is a lot different as it was a disc that was pushing onto my cord following a very nasty fall from a horse riding accident (normally that would mean i wouldnt have to come on a site like this, but the compression was huge and has left me with pain issues the same as others on here). So I have no help to offer I am sorry as its pain thats my main issue and I am glad to hear that you have none and need no medication I see you on other threads though I hope

Maybe your girlfriend can join in the spouses/carers? She sounds lovely. A good few carers on here have helped me as much as others with SCI's.

I hope you get a lot of help here to find the answers you need. And if not, I'm sure you will gain some extra support to help carry on thorough til you find new questions to ask.

See you on a thread soon (australia hey, I have visited it............ in my dreams and by watching neighbours only. It looks fantastic. Enjoy the sun for us)

[cathie]

Hi Andrew! Welcome from a fellow Aussie.

You will get used to your chair, but it may not be set up quite right for you and that makes you feel uncomfortable. I also transfer out of my chair as much as possible when at home. Half of my house is inaccessible unless I get out of my chair and drag myself up some stairs. Balance will improve with time or more like you get used to it and compensate.

As for the UTI it should go away with time and the right antibiotics. Indwelling/foley catheters will put you at a higher risk for infections as they are there all the time.

The mattress thing I get that and for me it is spasms, but find if I sleep on my side I have less of an issue with looking like I'm about to do a sit up.

Not sure about treatments as I have not had much to do with that side of things.

Just my take on things, but you will work things out in time by yourself and with help from others. It's a huge learning process we all go through. This site has been a huge help to me with suggestions and new things to try or ask my rehab team about.

Cathie

[tyvin]

That is some kind of break you had! At first when I saw the photo I didn't realize it was a spine ewwwwww.........nice one.

As far as future treatments/recovery just do the research and see what's available.

UTI's; do lots of water, don't drink alcohol when taking the antibiotics/anti infectives. The alcohol renders the pills useless. Follow up with the doc about the CnS (culture and sensitivity) to see and make sure your on the appropriate med/meds. Good diet with quality protein source. Keep it clean and exercise. You also can mentally go there but that's not for everyone.

Welcome sir and it sounds like you've accepted your current fate. Keep it up and see ya round the forum.

[nomis]

Hi Andrew

I have a son living in Newcastle.

I'm a bit concerned about you sitting in your w/chair without your cushion. It might feel more stable (until you get used to the cushion) but you realy are risking a pressure sore that you will greatly regret. Take paranoid care of your tailbone as well as those tuberosities.

You doubly risk a pressure ulcer if, after sitting all day, you then sleep on your back. That tailbone sure is getting a hard time. I'd suggest you find a way to sleep on your side, preferably turning during the night or at least alternating sides each night. For me it works best to turn face side down then turn to one side. I find that easy to turn back to the other side which I usually do some time in the middle of the night without hassle.

UTI's can be hard and severein these early days. Follow the doctors instructions and with what you learn as you go they become less of a hassle or disappear altogther...but you've got to look after yourself. I hope you get your accommodations sorted out soon so you can more fully get back into life.

[Tetracyclone]

Andre, Welcome again! Do search old threads on the site and you will find most of your questions have been answered for others. I agree with Nomis that you are running a risk by sleeping only on your back. Often at first our skin is still pretty healthy, but over time, especially if you do not vary your positions, the lack of circulation to the areas that are constantly compressed by sitting or sleeping will make your skin sick. Skin, like everything else, needs lots of blood circulating.

I found myself uncomfortable in my first chair. The sling canvas seat rolls our knees together. On my ultralight chair I got a solid metal, non-folding, seat plate that supports me like a flat board would. I can easily roll my knees open and even splay one leg over the side tubing of the chair. Many chairs can be retrofitted with a solid seat plate, but then it will no longer fold for stashing in your car.

With a solid seat plat a good roho cushion is essential but feels very different from how it feels in your present chair.

You must learn to sleep on your sides because that beautiful girl friend badly needs to spoon.