[MxDisasterGrl]

Alright guys, I'm very serious about trying to find a way to get better, quick (you know, not that i read that over again, it's stupid! Nothing comes quick for us, nothing). So, I was looking up some clinical trials and decided that Maryland has a good program I could possibly benefit from. There are no drugs involved (darnit). It is simply a treadmill program. They use a "lokomat" machine w/ a harness to support your weight. It can last anywhere from 1 1/2 months to 3 months. Bad thing is it's across the country from my children. But if in fact i could go somewhere and come back a lot better than the way i left, it would benefit my kids more in the long run. Still knowing this I'm nervous about leaving them for so long. The only time I've ever been away from them was when i had my accident. The only person i have to take care of them is my boyfriend. Our relationship is not great by any means, but he's been around them for 4 years. Ugghh...I just want to know i at least gave it a shot to walk better again. I know we all want it so badly, but do i leave for my self that long? I haven't even been called or approved, i'm just doing what i do, and i'm thinking ahead. I can't think of anything in my life that i've ever done for myself like this. Even before the accident, I didn't really do for myself. I"m worried i might get up there and get depressed again. Lord knows i can't go through that crap again. Does anyone live up there? It's in baltimore. lol, something miner to think about is the weather. I'm here in louisiana, talk about a huge climate difference to go through!!! My headlights won't know what to think up there!

Just thought you wonderful people might have something "smart" to say. Maybe even give me the boost i need to get up and going. Pack or stay and try myself??? Boring topic, i know, but i'm sure it'll get better.

thanks,
april

[ClaraTaylor]

Go for it.

You can always give up and come home early but you'll be kicking yourself for the rest of your life if you don't at least attempt it.

[guido]

Hi April

Sent you a PM

Guido

[dangerousdave]

If you think and the clinic thinks ..... go for it

I still give myself grief for not visiting Egypt when I still had some use of my legs.

So always do what you wanna do .. as tomorrow might be to late

Don't beat yourself up about it if it goes sour .. at least you'll try

[T11WALKER]

Did you ever look into the Shepherd Center ? Atlanta Ga is alot closer. They have clinicals there all the time, locomat etc..

[MxDisasterGrl]

T11WALKER, on Nov 16 2009, 08:43 AM, said:

Did you ever look into the Shepherd Center ? Atlanta Ga is alot closer. They have clinicals there all the time, locomat etc..

thanks walker, i forgot about them..i'll look into it, but as of right now....on the website i went to, it was the only one available and open for newcomers.
but i'll still look, thanks
april

Something weird happened yesterday. I was on my facebook and some guy asked if he could be added to my list, said that he had heard about my story and wanted to see if he could help. He's a physiotherapist, and lives all the way in seattle. I have no idea how he found me, as far as i know he's not on this site, although it's possible i guess. Anyways...we chatted for a bit, and he asked for my number so he could call and maybe help out even if just over the phone. Said he had helped a few others that way. I was hesitant at first, but gave in, figuring well if he's going to kill me, then so be it. But if it's god trying to send some help, i can't turn that down. Anyways...he said if he had time between patients today he would call. He did, and asked me a bunch of questions regarding my recovery so far. After about 20 minutes he had me on the floor doing exercises that were supposedly going to help out. They seem like they could in fact, so i'm excited to try them. We talked a little more and he needed to see other patients. But said i could text or call him anytime for advice, just to talk, and to let him know how things are working out. I just thought to myself, "wow, people do care. And all it took was coming out on the computer to let people know i'm down and need some help getting back up." After "evaluating" me over the phone he said that it seemed to him that i have everything needed to walk again. That it seems my return is great! i just need to capitolize on it soon. I'm excited now that i've heard just ONE positive thing from someone who knows a little bit. I know we all get tired of hearing those negative doctors say it's all your going to get. Behappy w/ what you have already, don't count on walking, just stay content...etc....
anyways, i just wanted to share that w/ you all....
if you haven't already noticed i ramble waaayyy too much!

thanks,
april

[Tinbasher]

MX be a little cautious of people who contact you like that especially if they put themselves in a position to ask personal questions. Your relatively new to all this but there are some pretty weird guys around, just ask yourself. How did he find you? Why you? He may be perfectly legit but if you don't yet know about "Devotees" try searching some old posts here.

I hope he is legit but be careful.

Best

Tin

[qbounce]

Second what Tin said, although it sounds like you got lucky with the last guy (no pun intended-lol).

Go do your trial up North. As for the head lights . . . . wear sweaters, thick ones! Good luck.

[T11WALKER]

MX,

I agree with Tin & Qb BECAREFUL out there. Shepherd Center is about a 17 hour drive for you, you NEED to spend some time on there website !! Go to the research part and you can fill out a form for clinical's. I would also call that dept.
I might be bias but Shepherd is the best for SCI!!!! Yes go do your trial but when your done you need to look at some how going to Shepherd.

Steve

[MxDisasterGrl]

Thanks, guy. I don't know what you mean by that devotee or whatever word, but i'll check on it. And Walker, i did check a lot on their site. It all looked fantastic, and they do have a trial going on right now and open for the same thing, but they are ALL T11s and up. I don't qualify. With that being said, i'm fixing to get on the phone and call them myself. Just to see if there's a "loop hole" i might could fall into....thanks for the help, any other advice keep it coming!

[MxDisasterGrl]

hey "Q" you have noooo idea how lucky i am w/ men in general! lol, i'm one of those girls that knows how to sniff out the worst guy w/ in miles....i have no idea how i manage to be so good at being so bad w/ men...oh wait, that kind of goes good and bad doesn't it?! lol j/k....honestly i guess some women like challenges, but anyways...different subject...i feel weird talking to this other guy honestly. And by the way he found out about me through my myspace blog...still though, strange!

[zshepperd]

Hey April, just reading your post. Seconding everything folks are saying about being careful with people, which I'm sure you already know. But I also have to second the comments about the Shepherd Center. My wife spent quite a bit of time there and it's fantastic. If you would like a person to contact about some outpatient/inpatient rehab let me know. With your level of injury, they're going to be more than happy to work with you. Also, there's some other fantastic rehab opportunities here in Florida which may be more appealing to you in terms of distance from your children and weather.

Cheers!

[MxDisasterGrl]

zshepperd, on Nov 19 2009, 04:49 PM, said:

Hey April, just reading your post. Seconding everything folks are saying about being careful with people, which I'm sure you already know. But I also have to second the comments about the Shepherd Center. My wife spent quite a bit of time there and it's fantastic. If you would like a person to contact about some outpatient/inpatient rehab let me know. With your level of injury, they're going to be more than happy to work with you. Also, there's some other fantastic rehab opportunities here in Florida which may be more appealing to you in terms of distance from your children and weather.

Cheers!

Actually i called a woman there at Sheperd and she said that as far as she knew currently they were only open to T10 levels and up....i was sooo disappointed. But comparing just the way she was on the phone compared to the others, she was great!!! She gave me another womans number to call that she said knows more about what's to come. I would def. like to get there; however, right now they aren't accepting my level. I haven't been able to reach this other woman, Leslie Vanhiel...i keep getting her vm...i leave a message, but no return...I'm really getting anxious to go and get this over w/....another new chapter....but i'm really having hards times w/ all the research...a lot of the lokomat trials right now are just for stroke patients or they're overseas...at this point, i may not care...i could see it as a vacation...

thanks, if you have a better resource there i would be much obligued...
preciate it!
april

[Sean's Mom]

April,

My son is in NRH rehab in DC. I have seen the locomotor, they have one here also! I am also close to Baltimore and would come see you. Just let me know if you go. Shepherd is closer to you. The weather here does stink in the winter!

[MxDisasterGrl]

I know that you a lot of you guys went to rehab after your injuries, but has anyone gone for the clinical trial reason alone? I was just curious about room and board and things such as that. Money wise and if i would be kept in the same inpatient/outpatient area as the rest. If anyone knows just holler back!

hey, "mom" thanks for the advice and offering to come visit! That's very very sweet!!! If i go up there, i will def. let you know!

I spoke w/ the lady friday in charge of the MS trials and she said just give them until Monday when the lady in charge of the SCI trials gets back and she will make sure that she gives me a call. If on monday by 1 they haven't called i will call maryland back and get busy w/ them. But i am looking forward to hearing from shepherd. Thanks guys for turning me towards Georgia, they really do seem to be very nice there. I just hope all works out well....!!!

thanks!!

april

[Tinbasher]

Did you not go for rehab anywhere MXG?

Tin

[MxDisasterGrl]

Tinbasher, on Nov 22 2009, 03:38 PM, said:

Did you not go for rehab anywhere MXG?

Tin

6/1/2008 hurt, 6/18 went to hospital rehab in shreveport (they see roughly about 4 SCI pts a year), 7/21 i was discharged. That's all...that was all in '08

[Tinbasher]

I was asking because in my opinion you really need to have exausted "proper" rehab before taking further steps (no pun intended) 4 SCIs a year isn't gonna build a vast experience in the staff.

[MxDisasterGrl]

Tinbasher, on Nov 23 2009, 03:15 PM, said:

I was asking because in my opinion you really need to have exausted "proper" rehab before taking further steps (no pun intended) 4 SCIs a year isn't gonna build a vast experience in the staff.

I can understand that, it's just right now...i don't really have any choices. I'm just trying to get the best rehab i can at the moment. I've already waited long enough. Tryin' to get in, where i fit in...lol

[ericr]

Hi April,

Iwas reading your post about going to Maryland and some of your concerns. I am a c6 c6 incomplete I was hurt in a diving accident this past memorial day. I have regained my entire upper body and am moving my left leg and just started moving my right last week. I live in south florida and been to a few rehab facilities down here and found that none of them are equiped to help you walk again they just dont have thefunding to give the proper therapy. I was gonna go to shepards ans university of miami but even that was not sufficient. we really need a strength based program. bieng i am such a new injury i knew i had to act fast. i was fortunate to find aplace that is in Palm Beach that does sbeen there for 5 weeks now and have gotten 10 times stronger, my posture and core is better along with both my legs having movement. I am not gonna lie the place is pricy but worth every penny. I am there 5 days a week 3-4 hrs aday. So you really get a full workout not this garbage u get at these rehab facilities that make u try and kick a ball or play with clay. Thats for an 80 yr old with a stroke. no offense we are used to more of an active llife. Anyways if you want to hear more email me and ill put you in touch if you have facebook i have videos up of me on all the machines. You can check them out at www.neuroxcel.com
please if you do call tell them Eric R sent you I get some money off my month...lol
It is worth very penny the energy and people in there really make u happy and want to go to rehab.

P.S. Florida is not as cold as Maryland, ilived in NY and the weather sucks
trength training, lokomat training, fes bikes, full stretching the place is state of the art. The place is not therapist but strength trainers. I have
ERIC

[yvon]

Check Project Walk.Org in California

[MxDisasterGrl]

thanks, both of you, i'm going to check them all out right now.....

[ericr]

let me know what u think? i have som great videos if u want to see.

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[MxDisasterGrl]

ericr, on Nov 23 2009, 11:23 PM, said:

let me know what u think? i have som great videos if u want to see.

maybe i'm incompetent (its def. possible), but when i checked out the site, i didn't see your videos, just your testimonial. However the place DOES seem like it has everything needed to get so much better. I might be able to afford something in a few months or so, but if it's going to break me and keep me away for too long, i may not be able to deal with that. But i wish i could get there. Their site was different in the aspect of muscle strengthening and things like that. Most places just work you out for maybe an hour 3 times a week and that's it! And all they do are just a few simple things. I really desire a strenuous activity program. I've always worked out until i just couldn't anymore. Before my accident it was 5-6 days a week for about 1 1/2-2 hours. Some people will say that your muscles need to relax and that's over doing it, but i had a great body! And great results! At one point in my life i was over 200lbs!!! I've lost over 100lbs...i know alll about getting into shape. I did only gain so much due to being pregnant and steroids, but not everyone gets that fat from a bad pregnancy!! Thank god for them....

anyways, it looks and sounds great. But not sure about the money, i did send some info, and i did mention your name though ;) ttyl
april

how much are you paying a month if you don't mind me asking?

[ericr]

theres one video up on there they are redoing there site. but i have them on facebook. i emailed you with the price, it sucks that in order to get good therapy u need to be loaded. i by no means am loaded but im doing everything i can to raise the money. my friends are throwng me a benefit tonite to pay for it. if you have any questions or wanna talk email me

[CrazyLucky]

Hey April,

I actually live just North of Baltimore, but lived in the city for 6 years. I am actually in the process of transferring my care to University of Maryland neurology. I have a friend who is a Nurse Practitioner there in their neuro department. She speaks very highly of their program, and I trust her clinical opinion 100%. University of Maryland has a very established neuro/spinal program (they don't call it Shock-Trauma for nothing!). I have worked as a clinician in the Baltimore area for 10 years and have interacted with University of Maryland often at a professional level. It is an amazing medical center, and their methods of patient care are multi-diciplinary and very impressive. I am actually excited for the 1st time in a while that I will be cared for by their medical team.

As far as the climate, I grew up in North Eastern Pennsylvania. Maryland is not cold. It was in the 60s today and it's December. It "snows" rarely. For God's sake, they close the schools as soon as someone sees a snowflake. It's hot a humid as Hell (or Louisiana) in the summer. The city is great and is one of the few that is exploding in a time of economic hardship. There are definitely some dangerous areas, so if you do decide to come up, I would be happy to point you in the right direction. I agree that you have to do research on clinical trials to make sure they are safe, but I'm also a believer that you have to exhaust all options if you chose that rout. If I can help you out at all, please let me know. You have a good attitude, and that's not always easy to maintain. Keep up the good work.

[araitn]

Hey April, I think SCI-Step in Mason Ohio would be perfect for you. They offer a FREE trial week of their program which includes FREE lodging at a local hotel with an accessible room.

I went for the free trial week in early July of this year. They really know what they are doing and will definitely push your body to its limits. I was worn out and sore after the first day. You will also get a free massage, reflexology, and acupuncture sessions. Each day will consist of three hours of therapy. The first couple of days they will put you through all of their exercises and machines. The remaining days they will ask you which treatments you want to do. Their website has information on the equipment and treatments that they use. There are also picutes and videos of past participants. They even have pictures of my ugly mug on there.

If you can't tell already, I highly recommend SCI-Step. I plan on going back as soon as I fully recover from my last surgery. You will be talking with Michelle Brock and you can feel free to mention my name.

Good luck to you and if you have any questions, just ask.

Joe

[mark8088]

Hey April,

My husband has started going back to physical therapy...may I suggest another place for you to check into....It is called Cardinal Hill Rehab Hospital and is in Lexington, KY.....They have the Lokomat that you referred to at this hospital.. I cannot say enough good things about them...They do have a web site if you want to check it out.

MxDisasterGrl, on Nov 16 2009, 12:27 AM, said:

Alright guys, I'm very serious about trying to find a way to get better, quick (you know, not that i read that over again, it's stupid! Nothing comes quick for us, nothing). So, I was looking up some clinical trials and decided that Maryland has a good program I could possibly benefit from. There are no drugs involved (darnit). It is simply a treadmill program. They use a "lokomat" machine w/ a harness to support your weight. It can last anywhere from 1 1/2 months to 3 months. Bad thing is it's across the country from my children. But if in fact i could go somewhere and come back a lot better than the way i left, it would benefit my kids more in the long run. Still knowing this I'm nervous about leaving them for so long. The only time I've ever been away from them was when i had my accident. The only person i have to take care of them is my boyfriend. Our relationship is not great by any means, but he's been around them for 4 years. Ugghh...I just want to know i at least gave it a shot to walk better again. I know we all want it so badly, but do i leave for my self that long? I haven't even been called or approved, i'm just doing what i do, and i'm thinking ahead. I can't think of anything in my life that i've ever done for myself like this. Even before the accident, I didn't really do for myself. I"m worried i might get up there and get depressed again. Lord knows i can't go through that crap again. Does anyone live up there? It's in baltimore. lol, something miner to think about is the weather. I'm here in louisiana, talk about a huge climate difference to go through!!! My headlights won't know what to think up there!

Just thought you wonderful people might have something "smart" to say. Maybe even give me the boost i need to get up and going. Pack or stay and try myself??? Boring topic, i know, but i'm sure it'll get better.

thanks,
april

[MxDisasterGrl]

hey thanks crazy, mark, and araitn....

sorry it took me this long to reply. lol, when i said things were bad i wasn't exaggerating....my internet was cut off....it was the only bill i didn't HAVE to have...lol...long story between me and my bf as well...anyways....i will look into all of these. Maryland keeps calling me crazy, but i haven't really returned the calls because i'm not done finding knew things out. I was nieve and thought that clinical trials would be for free...i didn't know i would have to pay as much as i'm finding out..so i've been pretty bummed.

the ohio free week really does sound awesome. All the things you wrote about has me very intrigued. You all have written such good things about your rehabs that i don't know where to go....either way, i'm going to have to come up w/ the money first....ugh...life stinks sometimes...i just wanna get better...christmas this year is going to be the worst i've ever had as a mother. My bf and i decided that we wouldn't buy for each other, just the kids. And he'll buy for his family. It kind of benefits me to not be speaking or seeing my family this christmas, i don't have to buy for them! lol...oh well...anyways...thanks guys...and feel free to give me anymore info on the subject. I'm back now, and i'll be quicker to reply and check things out.

[jessalynn23]

Hello,

I am from Baltimore. Whether does suck down here. However, there are a lot good things for people with spinal cord injuries. where in baltimore are you going (or at)? Kennedy krieger has the best spinal cord rehabilitation center!
If anyone could give you hope they will. i have therapy there and i have a detailed assessment every three months. You should check it out.