[MxDisasterGrl]

Okay, so I'm a T12 incomplete (barely)...But god has seriously blessed me. I currently have strong quads, very weak(almost non-existing) hips (abductors), good adductors, and my left foot can go towards the left and down, also w/ being able to move all 5 toes downwards and pinky toe outwards. I can feel a majority of the bottom of the same foot. I have slowly been able to tell that it's possible (possible) that my calves are trying to jump start. Now my hamstrings are kind of weak, but there. My buttocks is trying to come back recently as well. My right foot seems to be my biggest threat so far. It's the one that if i'm not looking down at it, I can tell it to move up, down, all around and I really feel like it's doing it; only to look down excited and realize it hasn't moved a centimeter. Also when I'm standing I can't really feel the upper portion of my right foot. Making it harder to balance alone. This will be the part fairly harder to believe. I haven't been in therapy since my accident. My ex asshole was trying to take my kids away and i was forced to come home right away. I got only 3 1/2 weeks of rehab. When I came home I was just deeply depressed. Still get that way from time to time, but how can't we really?? Anyways....I just started dedicating my whole life to my children and boyfriend. Most days, w/ an exception of a handful have been difficult. I hate meds and so I go w/ as little as I can. I am pretty much off of everything. Just the occassional baclofen for my bad burning spasms. I know some would think that i'm crazy to say, "I know i can walk again" But I KNOW I CAN WALK AGAIN!! My body is trying to tell me.

Here's my delima and where i need some help if possible. I was told that i don't qualify for insurance until after another 1 1/2 through medicare/medicaid. Too young, too old, not pregnant, etc... okay well w/ out that i don't see how i can afford the physical therapy i need. Another problem w/ that is this. I live in such a small town that even if i did have insurance i wouldn't be able to receive the treatment i really need unless i traveled out of town, way out. So currently i've been trying to track down some clinical trials for the "treadmill". The closest ones i could find were across the country. I have 2 kids, i don't know what to do. I did go back to work full time for about 6 months, but decided i wasn't able to clean, cook, clean, take care of two kids and still have time to think...it was just too much coming home after 6pm and having 2 homeworks, 2 baths, dinner for 4 and then the house needs my attention. By the time i was done w/ that it would be passed 10pm...and that all was hard enough for me before my accident, so i just couldn't keep up.....

I wish i had the money to have a "home gym" but i don't. I really think if i had the harness, treadmill program thingy, my body would respond rapidly. I feel like i'm ready to run, but everything and everyone is trying to hold me down. I have to family support, and hardly and friend support here. No one cares to help research anything for/with me. I'm on my own, and for over a year and a half now i've done nothing about it. I'm reaching out to you guys for some help. Equipment, hospital trials/rehabs, insurance companies, doctors, etc...anything that could help out I would be soooooo thankful. I know we can't all walk again, but i would help any of you in a heartbeat if I thought there was something i could do. Thanks if you've read this far...

xoxoxos
april

[E-DOG]

Sounds like there's this rock and right up next to it is a hard place.
With you kinda in the middle.

I'm not quite sure how long you've been injured but I'll tell you this much; after two or three years most SCI's have gotten the majority of motor function back that will come back. Of course we occasionally hear about folks who experience vast spurts of improvement at odd times in their lives but this isn't common.

Hope is OK. Denial is spinning your wheels.

[MxDisasterGrl]

ya know what? I've read a lot of your "replys" and frankly i don't ever like them. I am definitely an optimistic person. I'm only a year and a half post accident, and i see much improvement from just little things i do. i really haven't done much at all other than live day to day, and that alone has been helping my situation. I hate negative comments. I get enough from other people w/out needing to hear it from you, so i would appreciate "help/support", not an opinion that's meant to only break people down. I'm not in denial, i see evidence to back up what I'm saying almost every other day. Are you literally so bitter w/ your own situation that you have to sit on here and wait for any oppurtunity to hurt someone, or wear them down? I'm not trying to be rude like you are a lot of the time, i'm merely asking that you don't "rain on my parade". thanks

[AndrewB]

You know, E-DOG really is trying to help (in his own way) That's all we can do is try and use our own personal experience with this thing and offer a little insight, he really is not trying to be offensive... i think??

Besides that.. It sounds like your having some good return, and while sitting around waiting for the finances to get some therapy, you could use what you do have. With someones help you could try and find some parallel bars (or something like them) and see if your legs lock out underneath you, keep moving those legs, and talk to your doctor about cutting your baclofen if you really do think this is an achievable goal for you. GOOD LUCK.

[dangerousdave]

Sorry but E-Dog is right
What we ned to know is when she wa injured
2 years regen nerve period is correct with some exceptions
But the exercise thing is totally down to the individual capability
From the info she has givn us I would personaly look at a general "York" gym and rowing machine
Right up until I had to give up exercise I had the use of our local tenants centre gym.
But she says she lives in a small town without any facilities and being a Brit, cannot coment on your healthcare system
It also sounds like she has got to cut down on her working hours, that again is a personal decision

Hard life - Hard decisions
Wish you well

[qbounce]

How long has it been since you were working? You mentioned going back for 6 mo's. If you just stopped recently, you may still be elligible to file for COBRA. It's an out of work insurance, allowig you to continue receiving your companies benefits for up to 18 months (I believe) post employment.

Ask about it at your previous place of employment . . . . and best wishes to you.

By the way, this young lady still has the opportunity to continue gaining function, and who among us would deny her otherwise?

Dangerous, she said it's only been 18 months now. In my eyes, and most anyone who's read her post with their eyes open can see she's looking for help and advise to CONTINUE therapy. This also means, regardless of being from a small town, she obviously was able to get therapy before, and is still in need to continue it.

[StillFingers]

Hi MxDisasterGrl,

Given your medicare/insurance status and two kids, you're kinda on your own...there's just no free ride here in the USA...it sucks having to wait two years post injury to get further assistance, but we all do. However, since you seem to be wanting to push your physical recovery further you are going to have to get creative with your own exercise regime.

Stretching, strength building, weight bearing, cardio are all areas you can work on while you wait for possible assistance from the Gov. What other real choice do you have but to go it alone for now...the economy sucks for most of us, so do what you can with what you can/have.

Parallel bars were mentioned, perhaps a local high school or college might let you use their equipment or help you find some used equipment. You might also look at the links below, the bounce back exerciser is only $500 and it might help you exercise, use/test your walking skills in a safe way, without to much undo stress on your body. Also, if you have a local YWCA or public pool, walking in a pool provides good resistance training and helps put less stress on your body...gravity sucks...water helps.

The exercise options above might be your best bet until you can get into a more formal/funded physical therapy program. Do check out the other link below, access to recreation, for other exercise options you may not have thought of...never surrender!

FYI, your local church or other community assistance organizations might be able to help with some funding...I'm guessing you already figured that out tho.

Best of luck,

Jerry

The Bounce Back Fitness Chair
http://bouncebackfitnesschair.com/

Access To Recreation
http://www.accesstr.com/

PS. As others have said, the Dwag means no harm, his humor/sarcasm is often a reality check we all should heed from time to time; brutal yes, perhaps of little comfort, but honest and real also.

This post has been edited by StillFingers: 08 November 2009 - 12:41 PM

[Ches]

I think continuing to seek therapy when you are obviously still making progress is a very logical thing to do.

Gyms and exercise at home is going to be your best bet.

If you really want it bad enough tho, you'll figure out a way. And I dont mean walking, just the getting to therapy.

Do you even know where you would like to continue with therapy? Have you shopped around for a deals or trial weeks at various recovery centers?

[dangerousdave]

Dangerous, she said it's only been 18 months now. In my eyes, and most anyone who's read her post with their eyes open can see she's looking for help and advise to CONTINUE therapy. This also means, regardless of being from a small town, she obviously was able to get therapy before, and is still in need to continue it.

Sorry missed that 18 months
Yes .. anything under 2 years .. fight for .. cause those signals are seeking paths, and only hard work will make them connct

Looking back to when I worked in USA for a little while (Detroit) I took the family to evening/night clubs at the local high school. Mainly for the kids benefit, but I do remember using the swimming pool, and I'm sure it had a pool chair too

So whats available at your high school

And that E-dog thing
Cool down - his posts are brutaly honest and pushy .. and occasionaly hillarious

This post has been edited by dangerousdave: 08 November 2009 - 04:03 PM

[CR_L1]

Hi MxDisasterGrl,

First of all I don’t believe for a moment E Dog was putting you down or being bitter in anyway, his opening statement was “bloody hell lady sounds like your stuck between a rock & a hard place” & is it any wonder why you don’t get any, or very little help from people around you if your going to go off the deep end every time you don’t get the sugar coated response you want to hear.

I’m pleased to hear you haven’t just giving up on one day walking again but no matter what, its not going to happen overnight.
Why cant your kids & boyfriend help around the house to free up some time for you, so you can spend some time helping yourself.

[Kwag_Myers]

I'm a T12 incomplete also. The best exercise I ever did (and hated with a passion) is to walk your chair. Use your feet and legs to pull your chair around the house as much as possible. When the wheelchair gets too easy, switch to a stool with wheels or an office chair. This will build up your legs without any exercise equipment.

[Tetracyclone]

E-Dog is just a junkyard dog. They are SUPPOSED to bark at people. Its his job.

It is possible you have been blessed by the lack of therapy. Life is the best therapy, and you clearly make a habit of pushing your limits. I know your living quarters may be cramped, but if you can demand that your family to make room every day for floor mats, there is a lot you can do to work the leg muscles needed for walking. I got my mats off the web for $50, including shipping. Have you figured out how to get up and down off the floor?

You can lay on your belly to life your feet behind you for hamstrings. If you cannot lift at all, get the BF to lift them for you while you try. One of your kids may have a calling for helping Mommy in this way as well. Give it a go- in Taiwan kids often acted as PTs for their parents, and the real PTs are happy to train them. Same for laying on your side and lifting. Laying on your back you can do Bridges, move legs out to the side, and turn the feet in and out.

Again, if you cannot do it with the leg, help with your hands or someone else can help. You have a great family and helping Mom could be a wonderfully unifying cause. Watch Guido's Videos on his web site to see how he moved his legs while seated on a table.

You can work up to standing and walking without the harness- I know I never used one. I just stood every day until i got bold and swung my leg out to take a step. And another, and another. Someone needs to bee there, of course, with their hand in your waist band. Everyone's suggestions are great, just figure out which one's you can work with.

Therapists often encourage SCIs to strain until we injure something. Secondary injuries are common, so it may not be a bad thing that you are going at your own pace.

I have seen the research about how we make most of our gains in the first 2 years. All of us should remember that these are averages. I suspect one thing they reflect is that at 2 years most of us need to get on with life and when we hit a wall to our progress, figure that must be it. Maybe it is, maybe it isn't. The very best thing you can do is trust your own intuitions and perceptions about your own body. You will hear it if it says " I can't go any further". Until then, work like a maniac while being patient and loving towards your body. And maybe in three years it will say "I'm ready for a new challenge". Who can say?

Best of luck- I know you have the determination so that is not an issue!

Pwuff

[MxDisasterGrl]

Thanks guys, I really appreciate the advice, all of it. I'm definitely not a rude person at all. I don't dislike/hate E-Dog at all. I just wanted to set things straight. I'm NOT in denial, and just that one comment alone made me mad. He doesn't even know me, so i have a right to let him know how i feel; since he goes around letting others know just how he feels. I'm a very blunt person myself and I also let people know the truth. Because of that i don't have to have it "sugar coated", but i also don't have to take or like it. I could have written pages more of my own personal situation, but i really just wanted to make it shorter.

I can get down on the floor, get up, stand up and push a buggy at walmart all on my own. LOL, of course pushing it is about all i can do. I have great balance and just need a small something to hold on to in order to walk. I started out using my forehead at home while pulling up my pants and clothes and such. Recently ( a month or two ago ) i realized that i am able to just stand up alone w/out touching anything and pull my pants up myself. I'm sure i look goofy, but hey, who cares right?? lol....However the only way i CAN stand long enough to get them up and buttoned is to bend at the knees. Also if i bend at the knees, i'm balanced so well that i can even jump up and down w/ my hands up in the air. Of course not leaving the ground. I've noticed how well my balance has improved and just really wanted to work on this. When i'm on my walker if i squat a little w/ my knees, I can also walk very quickly; however, once again, looking goofy. I used to do it at work to get a good laugh from others. I can only imagine how dorky i must look. But laughing is my game, and it's my fav. thing to do w/ others. Hear them laughing at something I've said or done. Anywho.... if i could only get my ankles working i would be walking. All of my muscles may not be very strong, but my legs when i'm walking are just screaming to run. And i know we all feel like that from time to time, but my body is almost going faster than my mind is expecting. The schools around here have nothing even close to use. I do have one therapy gym/rehab, but i can't afford it right now.

As far as the COBRA thing, I am aware of that. Thanks for pointing it out. But it is VERY VERY expensive. I do have a cousin here w/ a small pool and this summer i got in it. I spent only 2 full days in it and noticed a big difference!! TWO DAYS!! The first day i couldn't walk w/out falling. At the end of the second day, my cousin could walk in front of me, stirring up the water, and i could remain standing and walking w/ hands in the air by myself all the way across. I can lay down and pull my legs up and down. One of my biggest weakness's is the rotating my feet in and out. I'm working on that, but it's part of my hips; which are practically non-exsisting as i said before. But i have noticed them trying to fire up. I can also get on all 4's and lift my legs up unassisted. I really don't do anything w/ assistance. I feel that my family's lives have changed enough w/out constantly needing help. I use my wheelchair at home because it's faster, and obviously i can't carry anything heavy like pots or pans w/ my walker. So i do a lot of sitting down, standing up. I walk from one end of the counter to the other using my countertop. Then sit down when going to the frig or carry something heavy like milk. I've really been able to stand up pretty easy and for awhile since 3 weeks after my accident. I think i'm doing very very well; however i still have "bowel" problems and i'm so terrified of going to a regular gym only to be embarrassed. I know just about everyone here, and if i don't it seems word still gets around. And no, i guess i'm not more concerned about what others think compared to walking, but damn, I only have a small amount of dignity left. Or so i feel that way. At least i can drive my car (a standard) and still "look" normal. It's kind of my getaway. I'm not bragging, i'm not complaining. I'm just trying to give you guys a better picture. I haven't seen or met one other single person in my condition and i'm really curious as to how far advanced or behind i really am w/ my injury. My hips seem to pop a lot when i walk and it's a little scary. I have been taking care of myself as far a diagnosis' and medications and such. I did surgery before the accident, so i'm friends w/ all the docs here in town. I just tell them what's going on, and they usually see me after clinics and write a script or not. I haven't been having the x-rays i'm suppose to since my surgery. I took myself off of all my medications. I've taught myself how to do everything i'm doing, and when i finally saved up some money to go see the PT that first saw me post injury. He just said, "Well, you're doing way better than to be expected. Personally i never thought you would stand, let alone drive yourself up here alone, and walk through my doors. All i can really say april is that you probably know more about your situation than me. Most SCI pts do after a year. Umm...stop using the braces (i never used them in the first place), and just keep doing what you're doing. And STOP expecting that you will be walking later, be happy w/ what you have already gotten back!" What a costly long trip i made for that shit. That same doc told me right after my surgery that he saw no reason why, w/ all my "athleticism" and soon motions w/ my legs that i couldn't be walking down the road. HA, now he thinks i'm done. Okay whatever that's fine. I guess I am in denial about one thing. I guess i'm just thinking someone will just notice i need help and point me in a good direction and actually give a shit. My parents left me while i was in rehab. My kids were taken away while i was gone, and my bf stayed at home w/ only 1 visit while i was there. Things couldn't have been much harder. Plus i'm a young active, hard working single mom. It was a tough time as were ALL OF OURS. I mean, right now instead of really having much time to figure out what i'm going to do about my legs/feet/walking. I'm really trying to decide how i'm now going to be able to "financially" support my kids until they're grown. I'm fixing to start college back up so i can go into a different career field that doesn't require walking (just in case ;)

I know all of us have been given a crappy dealed hand. I know i may never walk again. I know i prob. won't ever be able to play football, dance, or run w/ my kids again. I know that i prob. will never get to "walk" down the aisle at my own wedding. Which may not ever happen anyways, so a poss. no loss there. lol. I know ALL OF THAT and more. But what i don't know is if after 3 months, 6 months, 1 year after trying if i COULD ever walk again. Coach my kids w/ their sports and actually be ON the field. Or show my son how to really throw a football, and how to make a good tackle. Or to show my lil girl how to do a cartwheel correctly, or how to do a few dance moves.

I spent too many years in the air force to be able to think that i'm in denial or that i'm finished where i'm at right now.
And just some food for thought for all those who say that people usually don't recover much after 2 yrs. I beg to differ. I have a good friend of mine whose brother in pakistan fell off a very high latter. I'm not sure what level his injury exactly was, but imran said it was just below the neck. Anyways...he said he couldn't feel or move neither his arms, nor his feet/legs for 2 1/2 yrs. But at 3 years started to improve little bits at a time. Then after 5 years of working on it, he is now walking around normal w/ no assistance, has a wife and 3 kids that he plays ball w/ all the time. Another guy who was the wrecker man where my bf worked at told me a story. Now i had only known this man as he was, which was a very tall, big, wrecker man. He was shot in the spine from behind by his ex-wife. (i'm in redneckville here) He was paralyzed, still not sure the injury level, i think he said T10, but not 100% sure. Anyways.... he didn't get full function until his 5th year. He said w/out water therapy and working through tons and tons of pain, he would never have made it. But by looking at him working, lifting cars, chaining things up, i would never have guessed it. There has been others that gave me their stories, so forgive me if i lean a little more towards the "hope" side as E-dog liked to put it. No punt intended. I already had a really hard life before this, i had to grow up way too fast, joined the military at 17, started having kids at almost 20 and i've worked just about every job under the son trying to support them. And just when life was getting very good. Great new place, new car, awesome kids, great job, and working out looking pretty good i guess. BOOOMMM, this. I've totally execpted it though, i'm just ready to move on to the next chapter and i believe i'm walking in it. I really wanted to reach out to all of you guys because i think you all are the BEST! We all have stories, we all have limits, i'm just not done w/ neither of mine. And i would like your help getting to my next chapter. Keep the advice coming, i'm all eyes!!!

xoxoxs
april

[guido]

Hi April

Bravo for the choices you have made! Not the easy route and not one with a known or secure destination, but in my eyes a worthwhile choice. Pwuff mentioned my videos. The site is out of date but I'm very close to it being updated. Sounds like you already have a tonne more than I do in terms of what you can do.

The will to walk debate is always an emotive one with SCI people, and never fails to get a reaction on these sites. Both sides are doing what is right for them, but put their view over in such a way that it antagonises the other and gets a bite. In the end, we're all just humans trying to get along with our lives and often making difficult choices.

Do you know what Theraband is? (Otherwise you could just use a towel). You can put this round your feet and the elasticity acts as a resistance, and you can lie on your back and spend hours and hours and hours trying to push your feet to start activating your ankles. You need to make the mental connections too. Breathing and mental exercises. PM me if you want more.

Re: money & help. If your bf isn't doing anything, hard to see why you are with him, but agree there are little things your kids should be able to do.

What about the military? They always have facilities and should be able to look after their own. Here, each regiment has its own benevolent fund for just such eventualities.

Or else, fund-raise. Lots of ways you can do it and lots of people in UK do it for treatments, equipment, respite holidays, etc.. Can point you in direction of websites and ideas.

Work hard, stay happy.

Guido

[Tetracyclone]

Rough tough Creme Puff:

"My hips seem to pop a lot when i walk and it's a little scary." There are some other places in the forum where people mention this. Read for them, though I don't recall anyone getting much understanding. My right one does and I stopped paying attention to it. My knee fires like a 22- scares me, but the MD doesn't worry unless it cause pain. They know how to address pain but they simply don't know a lot of other stuff you wish you knew. You could be at the best SCI rehab center in the world and they still couldn't tell you what is possible for YOU.

"I feel that my family's lives have changed enough w/out me constantly needing help."
Rule of thumb: Nobility=BS

The ankle thing-
I'm beginning to think you are ahead of everyone on particular ways to exercise your ankles. So if you have tried while sitting in your chair and nothing happens, or if you put your foot in your lap and push on your hand anf still nothing happens, then it just isn't there yet. I suspect you have a little response and are impatient with it. It sounds like many of our abilities are similar. When I could first go up on my toes just a little, right better than left, I started going up on toes, then down into knee bend 20 times each day. These particular muscles came along quickly, and within a month I was doing 30 without tiring. Different muscles respond differently and I'm guessing that it depends on how much nerve function is there. If new connections to neighboring tissue must be grown from one little nerve it takes TIME, but putting demand on it directs the nerves to know where to grow.

No two injuries are alike. Everyone is trying as hard as they can.

Atta girl!

[MxDisasterGrl]

i can't get up on my toes, i can only wiggle my left footed ones....i said that weird anywho...I'm just able to feel my calves being able to be flexed a little....

I"ll work on the theraband thing. i have some, just not really my fav. workout...i really haven't been working out at all.... it's not the best part of me i like to talk about. I'm not self motivated, and when i get down, i get lazy i guess. Another thing i hate. It's why i joined the air force. I'm really active and love to be, but this whole not being able to be the mom i want to be really has me down on a somewhat daily basis. Speaking of which i need to go get my daughter from dance in a min. so i'll get off here...thanks again...if you guys have anything else to mention feel free.... i'll talk more later....
april

[Tinbasher]

MxDisasterGrl, on Nov 8 2009, 07:37 AM, said:

I am definitely an optimistic person.

OH no thats it I wasn't opimistic enough



No offence but your not the first to pop up and tell us how optimistc and positive you are but that doesnt make it our fault we were all optimistic once we just werent lucky.

You sound like you should carry on with rehab if you can and good luck with it.

Tin

[edlee]

Her problem, Tin, was that she couldn't afford rehab, and was asking how to get it.

I notice you were in the Air Force. Have you contacted the VA? It doesn't have to be a service connected injury/condition for them to pay for some or all of it. Check the net for the PVA,, Paralyzed Veterans of America. They have service officers who have the knowledge and expertise to help you.

You also mentioned that you had operations before your accident. Is it at all possible that that preexisting condition could be causing some of your present problems?

As for Edog,,, well, he's Edog,,,, that said, I reread his post,, and to tell you the truth,, it wasn't all that far "out there". You are in a hard place,,, and no matter what you may think you have heard,, improvement is generally minimal the longer you get from accident. That's not to say you,,, or anybody won't improve,,, it's just that the law of averages are against you,,, no matter what.

From what you have told us about both your original loss and your subsequent recoveries,, it seems you are doing well. We all, here, hope that continues,,, but not realizing that it might not continue to the point you would like,,, is a denial of sorts. One can be optimistic and pragmatic at the same time.

The fact that you aren't working tells me that you are being supported by your bf,,, which says something in his favor regardless of his apparant ignoring of you during your short rehab.

Check with the VA,, I think that would be your best shot at help.
ed

[MxDisasterGrl]

Tinbasher, on Nov 9 2009, 06:11 PM, said:

MxDisasterGrl, on Nov 8 2009, 07:37 AM, said:

I am definitely an optimistic person.

OH no thats it I wasn't opimistic enough



No offence but your not the first to pop up and tell us how optimistc and positive you are but that doesnt make it our fault we were all optimistic once we just werent lucky.

You sound like you should carry on with rehab if you can and good luck with it.

Tin

And what is your problem Tin? Maybe you weren't as optimistic enough. For all i know, i don't know you. "no offence but your not the first to pop up and tell US......." HMMM... I think that "us" includes me. See you are putting me in a different category as yourself and others here. Why? And at what point did I ever say you weren't optimistic? Why are so many people so defensive towards others on here. If I come across a person that has more back than me, I'm very happy for them. Plus it always gives me even more hope that I can get better. And i don't think I'm "lucky", I think everything happens for a reason. I think some pray and some don't. I think that some people work harder at getting better than others. I can name a few people on here, some better than me, and some worse off than myself. And they all have put more effort in than I have. I've been slacking, just living day to day life, nothing more. To me anyways...I haven't been doing rehab since my accident. Thanks for the good luck though, i appreciate it.

[Ratticis]

At this point all I want to do is say good luck with your recovery and leave it at that. This bears a bad stink to a simaler thread none too long ago. That being said, I'm not trying to compare anyone to certian other douchebags, just the whike premise stinks of familiarity.

Good luck with your recovery!

[twisted_ophelia]

MxDisaster, why are you so defensive?? Jeez. Chill out.

I agree with Ches. Did I misread your first post or are you asking people to donate money to you at the end of it? Anyway, regardless, good for you for trying and where there is a will there is a way. I think with very incomplete injuries, there is always a chance for getting quite a lot of function back. Personally, I think being realistic yet optimistic is the way to go. Putting all your eggs into one basket could lead to some serious disappointment. Many people are in similar boats, needing/wanting therapy and not being able to afford it. Your best bet is to get yourself involved in clinical trials or research study at SCI rehab centres or hospitals. I find your posts a bit confusing though. You're saying you're basically walking in some of them and in others you're not walking and are close to walking?

This post has been edited by twisted_ophelia: 10 November 2009 - 04:33 AM

[rue2you]

You learn, Mxdisastergirl, that the longer you are on here interacting with each other, you get this underlying loyalty to one another. I am very easy going and try not to get anyone going on a post but I will still state my opinion (cautiously). Probably the very fact that you lashed out at the Dawg hit a sore spot for many of us because he is just part of this site. If you mess with him, you have kind of jolted our whole support system on here. Maybe that isn't fair, but it is a fact nonetheless. I have gotten negative words from the Dawg in some posts and we would not agree at all, but then there are other posts where he is most supportive and quite funny in his own way and gives us a smile. So, what I am trying to say is, even though you may speak your own mind too, that is okay, but you may want to "earn" your way to that voice by becoming known to all of us first before taking us on.
We really are a great lot of encouragement, but we have to know that you are with us too. You won't get that if you just kind of attack someone in some of your first posts.
I hope you will take this not as discouraging you , but as a friend trying got help you get the most out of this place. Good luck with all of your progress!!

[MxDisasterGrl]

Sorry if I have been confusing on some of my posts. I don't mean to be. I write them all very quickly, and hardly go back over them. I'll check them more closely from now on. I DO walk w/ my walker. I honestly think that if i just had my ankles back I could easily walk just fine. The real only problem i have walking are my feet dangling, so naturally i'm forced to lift my legs up higher. I'm aware that i may not walk any better than how i do now. As a matter of fact I'm looking into a new career field, and i'm only settling w/ one that i can do sitting in my chair. I'm a christian (baptist), and i'm a firm firm believer that if I give up on myself and stop believing it's possible than so will god. I feel once my effort stops, his will follow. That's all i'm saying. There are days where i'm not as optimistic and my kids will catch me say something, and then say themselves, "wait, you WILL be walking mom, don't worry." That's them living in denial. However, i know when i first had my accident, i just told them mom would be walking again one day. Right after my accident i was in denial. But mainly because no one told me what was wrong. When i crashed my bf called 911 and then i took the phone and was able to dial my orthopedic surgeon friend. I told him that it was either my back or both my legs were broke, because i couldn't feel a thing. When I got to the hospital he was there ready to check me out. I remember going through some x-rays and i guess they "snowed" me as we call it w/ meds, because the next thing was just him standing over me saying, "Damn april you really screwed yourself up. It's your back and i'm not a back specialist, so you're flying to cabrini right away.". That was all i heard until another time after a black out the next day w/ all the other surgeons standing over me saying, "Okay we'll open her up from the sternum/chest here, like so." I sort of came to and said, " Wait a min. i thought it was my back. Well i guess if you ARE in fact going to HAVE to open me up down my chest, please call in a plastic surgeon. I want breast implants, and there's no need in going in w/out taking some boobies w/ you!". I got a big laugh from everyone, but I was being serious, lol. Oh well.... When i woke up days or whatever later not one person, doctor, nurse anyone told me what EXACTLY had happened to me. So when my kids came, I said i would be okay and be walking in no time. I'm very upset w/ all my family and friends at the time. How could they let me lie there and continue to talk the way I was talking to everyone. Hell, when my boss/friend came for me to sign some paperwork, she was telling me how my insurance would be gone after 90 days. I was like....ppfff...i'll be back before 90 days...don't worry. How STUPID did i look. But you know what? I think living in denial was the only way i really was able to get through those specific times. I was very high spirited and very happy to be alive. It wasn't until rehab that things started settling in, and i realized how "for real" it all was. But i have told my children since that there's always hope i will walk, but it may never happen. But it's nice to hear them all the time say, no there's a chance you'll never walk, but lot's more hope that you will. God love her. My daughter is lightyears ahead of her own age.

As far as the remark that i need to "earn" my spot here, or something to that matter. I just want you to know that i've been reading and reading and watching this forum for way over a year now. So, in my own mind I did feel apart of something, just until you said that. This was my first topic post. It's taken me this long just to open up to people. Had edog noticed that (and he may have), I would just maybe have hoped for a little more sincerity. You can look at all my other posts on other people's topics and i'm nothing but supportive, w/ the truth in there as well. Really I think we all need to be talked to differently for the best supportive results and i tend to read enough to hopefully be what people need at the time they need it, that's all. Believe you me, if i haven't already figured out that i'm between a rock and a hard spot, then it would make me an idiot. I was looking for support, not what i already know. And out of everything i've said, i never typed it with anger or hate. Just wrote how i was feeling at the time. I've been reading his posts for a long time, and what i see are others trying to reach out to maybe, like me, the only place they feel they may have some support. Just to get some, and then be shot down, or made to feel stupid. Like a post about a man never getting back a boner. I'm not a man, but I would think that's not something at all to joke about. I mean i could think of some people that would make light of that situation, but when you don't know the person, "proceed w/ caution". Some people aren't as light about things and jokes as others. And i think if he caught the right person at just the right time and said something a little harsh, it just may be the end for that person either on this forum or maybe in life. We all have good reasons to get seriously depressed. And i know that i've been down that road for a long time. Had it not been for my kids, even though i don't believe in suicide, it def. would have been a possibility. I guess i got a little defensive for all the other people who posted needing help and got a sarcastic response instead. I'm fine, he doesn't bother me. Just trying to explain that as best i can. I guess i'll forever have "enemies" on here now, but those were def. not my intentions.

Umm...as for the bf thing, no he DOES NOT financially support me and i've NEVER financially been supported by anyone other than my parents for 16 yrs. That kind of looks like i'm mad, but i'm not just for the record. I'm on SSDA (social security). I actually had a descent amount of money in the bank for a little while there, then the economy hit my bf. I had no choice but to pay our rent and all our other bills for the last 3 months. Now, I'm broke and he's just now getting a good job back. OH i do need to say that i AM receiving child support as well. Sorry for that, i don't know if you consider that "supporting" me, it's really just enough to do what my kids need for school, activities and food, so...

I don't really feel that i'm being too defensive. I'm only coming back w/ something to say after it's been said to me. Of course other than my second post after Edog. And like i said, i just remembered all the other sort of mean posts he had written and even though he can't get me down, i just felt i needed to say something. But i'm done talking about him. You can like me or not. It seems i might get more friends on here if i'm a bi*#@ rather than a nice woman.

I didn't have any surgery related to my spine or anything like that. When i spoke of surgery, I only was speaking of my surgery following my accident to replace my T12 and so on.

On the VA thing. I'll look into it, didn't really think of it, because i wasn't injured while active so I didn't think i would qualify for anything. But I will check it out. Great idea, thanks.

Oh ya, and HECK NO...lol, i'm definitely NOT asking for money on here. I could never do that. Not that there aren't maybe plenty of people w/ money on here i'm sure. But that's like going to rehab and asking for donations when they all share the same problems isn't it? I don't think i could have anything to do w/ a charity for myself. Some people were just suggesting it as an option.

thanks for everything guys,
april

[dom]

Hi,i looked for other posts but can't see any? correct me if wrong but maybe some people saw it as a 'first' post and asking for money?
wish you all the luck in rcovery tho'

[Pressingontx]

Do you have or can you get access to a spin bike? In my opinion, it is the best bang for your buck when it comes to gait training. If you think about the movements made when pedaling a bike, it is basically the same as when walking. Although you are not getting the weight bearing you would when on a treadmill, it is still a very effective form of gait training and one that we use daily here.

All the best,

Jason

[rue2you]

April,
I really want you to find support on here and I want to support you. I was just trying to give you a head's up about all of us on here. I'm sure if you have been reading, then you already know they want lurkers to speak up so we are glad you joined in. I was just trying to give some helpful advice about the best way to glean from this site and get support. Some of us find humor the best therapy we have and so we joke around alot and try our best to see the lighter side of hard topics. I guess some may be more sensitive to that approach and maybe we should think more about that. Maybe I am wrong. I don't know. I guess everyone else can speak for themselves. I really do wish you the best and I'm sorry if I upset you.

[MxDisasterGrl]

You didn't upset me. I'm fine. Thanks for the support, that's the only way i took it anyways.

Where is everyone coming from w/ the, "I asked for money thing?". I guess i'm missing that part.

Thanks for the bike tip. I'll check it out. I was going to try and workout w/ an eliptical machine, if i could get in the gym. It doesn't however work the ankles like i need. I did find an old friend of mine from high school that's currently overseas in the marines. He asked for all my info and #, and is going to try and get his mother who lives here to help me out. He said something about his mom being good friends w/ some physical therapists on base here. Said she might have some connections getting me some help. However, he hasn't spoken to her yet, and I'm not so sure if they are capable or able to help me out, but i have my fingers crossed. You guys know how it is w/ one person knowing another person, knowing another person. But we'll see.

As far as the other posts they are there. I didn't know that your profile page only holds a few of your last posts. But that really shouldn't matter. If you went to some of the disabled sports you might find them, I go all around this site as others do. And when i see someone i might can help, i try. That's all.

Thanks again guys,
april

[wheeliebear75]

If you're trying to keep your ankles from allowing the feet to flop then the ankle braces do do the job. But I quit using them like 10+ yrs ago........they routinely made sores on my Achilles tendon, & you said you didn't have insurance & they do need to be properly fitted by an ortho or PT.

[MxDisasterGrl]

wheeliebear75, on Nov 11 2009, 04:35 AM, said:

If you're trying to keep your ankles from allowing the feet to flop then the ankle braces do do the job. But I quit using them like 10+ yrs ago........they routinely made sores on my Achilles tendon, & you said you didn't have insurance & they do need to be properly fitted by an ortho or PT.

I've also had some AFOs now for over a year. I'll never forget how excited I was, even though i really didn't know what they were going to look like. This lady starts measuring me and puts the casting stuff on, but while she was doing all of this I was still sitting in my chair! Not standing up, sitting down. I asked her a couple of times, shouldn't i be standing for them be to be right?? She said no it's alright, I have your feet pulled straight down. I was fine w/ that, because I didn't know a think about being fitting for that particular thing, so even though i thought, "strange", i didn't argue.

I should have. It took them a long time to get them done, and i was so excited about picking them up. I'm thinking, "wow, now my ankles won't be dropping and i might just be able to look more normal!". Wrong. I get there w/ my mom (it was one of the 6 days that i've seen her since my accident almost a year and a half ago), and she comes out w/ these gaulky peices of plastic, and i'm just like, "are you serious? All the technology we have, and THIS is what I get???". I sit down and the woman rips out the soles of my brand new nikes, then she starts putting these HUGE braces in them. I'm still thinking okay april, it's not the end of the world. So I get them on, stand up, and i'm falling over. They are literally just making me fall down. I told the lady that they felt like they were pushing my knees out and making me go off balance. She said, "what would you know about balance right now anyways? And you're just not used to them. That's just how it's going to feel from now on.". O K...... I looked at my mom who was ready to pounce at any given second for me, and said, "okay, well i'll try it out.". I had to take them off, i couldn't even stand or walk w/ them. Then right after that my insurance was gone. I went to my ortho friend and he said, "they look like they were made sitting down.". lol, i know, i know i said, they were. So eventually waaaayyyy down the road when I started working again, I needed to use them according to my ortho friend. It took 3 days until I got my first blister. That was 7 months ago, and you can still see it down there on the inside of my foot. Purple most of the time. Well I ended up getting some insurance back and went back to the lady and she had to make a LOT of adjustments. Then still she wouldn't bend them down for me. At that point I had more balance and was walking better so i just dealed w/ them for a little while. Then went to see a good PT in Alex. that had seen me right after my accident and said, "Well, april if they're that awkward for you, don't wear them. See some people benefit from them, and some don't. I would rather you walk unassisted than fall w/ the AFOs on.". Ugghh....if he only knew. However, my ortho friend has been telling me for over a year now that if i remain walking on my feet w/out AFOs, I will need to amputate my feet eventually due to my ankle joints being too messed up. That scares the hell out of me. 50% of docs i talk to agree and 50% of them disagree, I really don't know what to think about that one. So, anyways, i don't wear them, I do have them, and thanks for the suggestion. Amputation my not be so bad, i mean honestly, I could walk after my ankles were cut off, right? Everything else works. And my feet are always embarrassing me by turning so darn purple in front of people anyways, sooo..... maybe it's not a bad idea.....

[msg]

Hi MX

I see your injury is a similar level to mine. I'm incomplete as well, and I'm now at the stage where I can stand well enough that I look as though there is nothing wrong with me. I still walk a bit funny though............but I'm still working at it.

I posted in the physiotherapy section about an air cushion that I tried once when I saw my physio. It's like a wobble board, except it's a flat rubber air bag, instead of wood. If you can stand at all, even if you have to take some of your weight off by leaning on a worktop or something, then it could help exercise the calves and ankles and toes. You can use it by sitting on it to help improve balance and trunk control, but I've just been using it on my feet standing up.

I had a lot of uti's through the summer, so did'nt get a lot of exercise, or not as much as I'd like. I've been using my cushion a lot the last 7 or 8 weeks now things have calmed down, and I notice a bit of a diiference in my calves especially, so it might be worth trying. And it's cheap as too.

Heres a link to the shop where I bought it from, but I'd imagine you could get something similar accross the pond. I'm still using mine I'm afraid, if I ever get fed up of it I'll send you it!

http://www.physiomedhomecare.com/modules/s...1&rangeid=2