Projectwalk visit

[Josh]

Hey guys! I just returned home from a week in Southern California. Even with the rain it was still nice. I thought I would give my take on Projectwalk. I can sum it up by saying that I went for a week and I wish I would have stayed longer. Something is going on out there! I'm not a scientist and I'm no expert in the field of SCI research but I know enough to know that something is happening.. People are "getting better" and showing improvments. This is the first time I've been encouraged in 2 1/2 years. Everything was top notch from the trainers to the workouts. The people at Projectwalk are good people and they work your ass off. I had some of the best workouts I've ever had. I felt muscles working that I didn't know I had. I also did things that I had no idea that I could. I rode a stationary bike by myself. No motor, just my legs. That was a great feeling and a hell of a workout. I dodn't think that there is any question that this going to be part of that combination of therapies that we always hear about. I loved it and it is the real deal! I'm planning on moving out there and going thru there program.

[jb]

does insurance pay that kind of treatment out of state or do you pay out of pocket?

[farm mom]

Josh, your excitement is catching! Can you tell us more of what you saw? Did you only see incompletes getting better or are there some completes as well? What level were you when you were injured and where are you now? Please tell us more. Thanks

[antiquity]

Wow, sounds great Josh, make sure you keep us posted!

A few questions: are you complete or incomplete, what's your level of injury, what exercises did they have you do and what prognosis were you given if any?

Thank you.

[Josh]

The insurance question I can't answer. For me it will be out of pocket but I heard that some insurance had helped. Someone else will have to answer that question. I will check with my insurance but I have a feeling they will not since they don't help with anything else.

Farm mom, As we all know all injuries are different so it's hard to get an accurate picture of who is complete and who is incomplete. I got the idea that the higher the injury the more they could help you. Also, the sooner after your injury the better. I saw one high level quad come in that was walking with hiking canes. I was told that he was the first person that went thru the program. This guy was unbelievable! I would give anything to get around like him. I believe his name was Mike. You can read his profile on the Projectwalk website. There were two other C level injuries that weren't walking yet but they could stand and showed a lot of strenght in there legs when they were working out. People are doings leg presses and there are people crawling around on the floor. It's not your tradional rehab for sure. I'm a T-12 complete, 2 1/2 years post. I haven't gotten any return since my injury. So, being a lower level I believe that I'm probably worst case but I still want to give it a shot and see what can happen. My advice would be if you have any movement to go out just for a week and check it out, you will fall in love with this place.

Seneca, They didn't promise me that I would get out of my wheelchair in 1, 2, or even 3 years. I don't think they know for sure. But I wouldn't rule it out. Maybe I won't and worst case I will be in the best shape of my life and ready for the cure. They just said that you will get out of the program what you put in.

I hope I answered all your questions let me know if you have anymore.

[Schmeky]

Hey Josh, I'm David from Monroe, LA. We met when you were visiting PW for your one week trial visit. I wanted to let folks know that I have an apartment in Vista, CA (about 8 miles from PW) and have attended now for approximately 5 weeks. This is what I have noticed since beginning the program: abdomenal muscle strength and sensation have improved significantly, as well as the lower back and obliques. For the first time since my injury (T-4) my glutes are firing and my legs tingle nearly all the time, not painfully, it is a waking up type sensation. For several days my feet tingled as well but this has since subsided. When I was taken off the gait trainer and put on the total gym last week, my legs were alternately firing, as though they were trying to walk, this was an impressive sight! I am headed back on January 5, 2003, and will be there at least till May of 03, probably longer. If anyone was any questions about PW, lodging, subsequent costs, or any other pertinent questions, e-mail or post. Yes, Josh, there is something to this. Success has been achieved by many other SCI victims in the past in various parts of the country using this same basic formula. Hang in there, It's a long bumpy ride. And happy holidays to all the PW trainers and clients (especially foster and ryan!).

[Andy C]

As much as I would love to travel to CA and enroll in PW, it would appear from the website that me being 12 years post is way outside the current requirements.

Also, I am UK based. I presume that I would need to rent an appartment, and either hire local assistants for bowel care, getting up, etc. or bring someone with me? Is care easy to arrange in CA? Yes, I know nothing about the stateside healthcare system!

Even if any sensation/motor return was miminal/non-existant, just going somewhere like PW to push the body to it's limits and get in shape would be a wonderful experience.

Imagine OEG therapy + Projectwalk.... One day....


Andy.

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To reply to me via email, replace 'spambucket' with 'andy'.

[Donny247]

Hey,
Were any of these people showing improvement chronic??? Also, could any of them walk a bit beforehand?? A response would be great.

[Schmeky]

AndyC, I agree with your OEG/PW analogy, but as you know, OEG for the masses is not an option. There is an SCI special fund in California that provides funding for people unable to pay. If you want more info, I could post the phone number after I get back to my apartment in CA the week of Jan 6th, 03.

Donny247, yes, there are many chronics attending, with no movement below their injury level. The program is relatively new, and although most, if not everyone will benefit in some way, not all attendees will walk away. PW makes no promises, only that they will work you as hard as you will let them. I have heard of people attending that are up to 10 years post, although I have not attempted to find out who they are.

[foster]

Hi Dave glad you made it home ok.Tell your family merry xmas from us. ryan on sunday was showing our family how he can walk on crutches.see you when you get back

[Josh]

Hey David! I wish I would have known that you were a fellow Carecure member. I've seen your name on here several times but I didn't make the connection.

Donny, There are people in the program that are chronics like David said. Again, I don't think that there is any question that the sooner you get out there the better. Unfortunatly, most of us are past that point. Will it work in Chronics? I don't think there is an answer to that question. Just like everything else, it will take more time. The good news is that the work is being done and chronics are in the program. But like I said in my post before, they are getting results. Anyone else out there getting any results? Not that I've heard of. I'm about time that something worked!!!

[Andy C]

Schmeky... Thanks for the reply.

It's not so much the money issue I'm wondering about right now, it's more how would I find and employ morning/night assistants so that I could live out there. I'm thinking I would need to hire someone from the UK to come along for a few weeks until local support was arranged.

This is assuming I would be accepted to PW as I am 12 years post.


Andy.

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To reply to me via email, replace 'spambucket' with 'andy'.

[Schmeky]

I know someone I could contact in the vicinity of PW that may know of a care taker in the immediate area. You need to e-mail Eric Harness at PW at www.projectwalk.org (http://www.projectwalk.org) and inquire with him about attending the facility. I don't think it will matter being 12 years post since recovery is based on plasticity, reversal of learned non-use, and patterning.

[Carl R]

Glad to hear about all these encouraging results. I am curious though if anyone has firsthand knowledge of anything that they might be doing to regain hand function?