[Lostgirl]

Hi ppl!

I'm a para of 36yrs now, was sweet 16 when had my rta, leaving me a T7, amongst many other broken bones.

Anyway to cut to the chase, done reasonably well over all these years, led a pretty normal life, had 2 kids, who are now 30 and 32! Yep normal births too!

But was any of you older paras get told, 'you will not get any better, but won't get any worse too??'

Cos I am now so fed up, I have knackered hands, with pushing my wheelchair and my hands being my 'feet' all these years, also, got osteoporosis (brittle bone, ok, many women get this with the menapause, but to top it all got a really bad curviture of my spine,scolliosis!!!!!

It's really hit me like a brick this, I look so 'deformed' now when I look in a mirror, find my 'normal' jeans and tops look fu**ing awful on me, I'm in a lot of pain too.


Havin a 'Moulded 'cushion made for my back to help support, also have to settle for a lekky wheelchair now!! These things are just to make the last of my days 'comfortable' has nothing can be done now, it's gone too far, moved my organs too....YUK!!

The thought of that is makin me so Self Consious................. I know no one can help me now, but for those who are just setting out on their '2nd lives', I wish you luck and keep this in mind if anyone tells you, you won't get worse, cos I HAVE!!!!

No more driving for me, no more going 'dancing', in nightclubs in my wheelchair, my independence has hit rock bottom!

Tekcare out there!

From an old F1 (Mr. Mullins days patient)

Lostgirl.xx

[Ben]

It`s sort of a joke too me when i think about all the stuff they told me in the hospital. Your right. I`ve got bad joints, joints that aren`t in place. Organs that work fine then just got all weird for no reason and of course the bent back problem. I weight 215Lbs. and am 6`6 and that upper mass really f**ks things up^. I know there probably won`t be a real fix since my body will already be wrecked. i just get on with it and hope I can at least do some of the stuff I want before my big dirt na p!!!!!!!!!

[nomis]

Hi Lostgirl

Sounds like you've woken up to the fact that the best years of your life are now maybe over and you're on the downhill run. There's no doubt that SCI brings some health troubles but the over-riding thing you are experiencing is ageing - which is common to everyone, eventually.

I'm T4 since 1970 and I've been going through a revaluation of my life and health in recent years. Initially, I was a bit panicky, thinking I was falling apart. And, sure, I've needed some extra attention like improved seating, a couple of eye ops and this and that. Learning to manage osteoarthritis and ways to budget energy, etc. Now I've got rid of my car I'm learning to adjust to that.

I seem to be over the initial horror that I was getting older and needed to give myself a bit more care. It's beginning to feel so yesterday. Now I'm into how best to enjoy my remaining time on this earth. It's so exciting because I no longer have the same pressures as when younger. Family have left home so I don't have big financial responsibilities which frees up my time, I don't have to learn anything that isn't going to be of use to me or entertain me. More than ever, I do what I want. And life is good.

So, sure you've got health issues and you need to attend to them.
But even without them you'd still have issues with ageing. At some time the realisation of that hits you and I reckon that's likely what is going on for you. It might not feel good at the moment but it will again when you adjust.

It's generally estimated that you can knock off 10 years your life expectancy due to SCI. Even so that likely gives you a few more decades yet. Now that you can appreciate that the clock is counting down you've got good reason to get on and get from life what you always meant to do but never got around to. For years, I've been getting great motivation from telling myself to do it now cos my time will run out.

This post has been edited by nomis: 28 March 2008 - 10:58 PM

[Ben]

That's just how I feel too. I have a few people in my family that don't get it and still try too get me too go get some degree in something that I don't want. And all I want is too be left alown to amuse myself with whatever there is too do today. Life is still what you make it and sometimes even the worst day can get better when you realize it could be worse and that there is always someone else out there that is worse off than you. Do something fun. Or better yet something stupid you can help but laugh at!

[longhaul]

Hi Lostgirl welcome aboard. I have to parrot nomis except I still drive. The bone lose is treatable for women ask you doc. some supplements like fish oil and EFA's help big time and goodnutrition is a must. When I see Steven Hawking I feel so very lucky I ain't got it so bad. Hey keep on with the struggle.Later

This post has been edited by longhaul: 29 March 2008 - 05:33 AM

[kewlcatkez]

Lostgirl, on Oct 23 2005, 02:41 PM, said:

Hi ppl!

I'm a para of 36yrs now, was sweet 16 when had my rta, leaving me a T7, amongst many other broken bones.

Anyway to cut to the chase, done reasonably well over all these years, led a pretty normal life, had 2 kids, who are now 30 and 32! Yep normal births too!

But was any of you older paras get told, 'you will not get any better, but won't get any worse too??'

Cos I am now so fed up, I have knackered hands, with pushing my wheelchair and my hands being my 'feet' all these years, also, got osteoporosis (brittle bone, ok, many women get this with the menapause, but to top it all got a really bad curviture of my spine,scolliosis!!!!!

It's really hit me like a brick this, I look so 'deformed' now when I look in a mirror, find my 'normal' jeans and tops look fu**ing awful on me, I'm in a lot of pain too.

Hello Lostgirl,

Nice to meet you, welcome (although I see u have been here a while). I have not been paralysed anywhere near as long as you, yet I am subject to and fearful of the things you mention. You see I am paralysed and it is in part due to the Connective tissue disorder which I have. I was unaware of the disorder as even though I dislocated frequently, I was a gymnast and Ballerina so it was out down to this. I didn't want to spoil my Nursing career so I 'hid' a lot of my issues. Unfortunately, due to hormones related to pregnancy and b/c each dislocation causes trauma and loosening, I now dislocate many jonts, many times daily (with associated POTS, AD, neuro and dislocation Pain).
So, basically I have tendon and nerve damage in my hands and shoulders and hips and ...etc...I am fearful as I have been a chair user/paralysed for 3 years, so there won't be much hope for me if and when I reach 30 years of it.

I think the best advice I have heard is to lessen the stresses where possible on our bodies. I have no choice but to use a chair which is Titanium as I can't push other chairs - I dislocate pushing a Titanium one....I suppose what I am saying is that by using the lightest chair possible, moulded backs and lateral supports where possible and applicable- and do all you/we can to prevent further damage and degeneration.

Although I do not doubt that your appearance has changed, if it is anything like me and the majority of the women I know and have known, the changes are less noticeable to the rest of the world. Doesn't make it any easier to deal with especially when there is pressure on your lungs and other organs...Have you been seen by a Dr who is recommended by the National Osteoporosis Foundation (in the US)HERE or the National Osteoporosis Society (UK) HERE? Also check out http://osteorec.com/ a resource centre. As you know it is crucial to find a dr who either has a vast knowledge of SCI/D, or an expert in Osteoporosis who will work closely with a SCI/D dr and Orthopaedic drs ( for the scoliosis). Not by any means wishing to teach 'grandma how to suck eggs' here, but wanted to offer these links. Sometimes there are interventions such as specially Trained PT/OTs who can make a difference to your situation.

Also, have you looked into a powered wheelchair? perhaps to take some of the strain from you in certain situations?

I see that you have a moulded back, I wonder did they look into the whole seat/back which is moulded to you, I know that this can really help to maintain movement and provide support and aid sitting more upright. I am sure you are aware that they can build in more support on one side than the other to assist with offsetting the curve a little.

Anyway, I am sure that you have looked into all of this, sorry if it is repeating, just hard to know what avenues someone has perused. I just wanted to say hi and to add my worries really. Like I said, I am sure to be screwed really due to my connective tissue etc. My daily multiple dislocations have already shown some inflammatory signs and my specialist warns that they alone mean an almost inevitable Osteoarthritis, then there is the paralysis. I suppose we just have to do what we can with what we have. I hope that your drs are working with you to provide you with as much support and solutions as humanly possible.

Thanks for sharing, I too hope that others have a better deal of it and that the future brings at least treatments to lessen other's complications of all of this,..

Take care,

K

[edlee]

Yeah,,,, getting old sucks,, bigtime.

Problem is, the only option isn't particularly inviting.

I've only been in the chair for a little over three years, now, but even before that, I was feeling the ravages of time creeping in.

Arthritis does seem to be the most annoying part ( other than the paralysis, the neuropathic pain, and not being able to reach the shelf Judi keeps the candy on).

Maybe it's easier for us "oldies",,,,,less is expected of us,,,,our sky diving and mountain climbing days are behind us ( chair or no). The kids are gone , though I kind of miss the chaos that living with them entailed.

All in all, I have to say I feel almost,,,relieved ,,,that I'm on this end of the cycle. I'm at the point in my life that, although I have fewer challenges to look forward to, I ,also, have fewer obstacles to overcome.

Not sure if I was very clear on that last. Must be cause I'm OLD!!!
ed

[Ben]

I was hurt when I was 18 so I was still stupid and still had that "it won't happen too me, etc...etc..." Stuff in my head like that did get me in trouble sometimes but now I see that all my joint pain is there for a reason. And the thing is after 18 years I just keep adapting too the next challenge. I tell my sisters I'mm going too get old and be the scary old guy that likes too scare the kids. There's always something maybe stupid that get's you alittle fun and thats part of what keeps me going.