Well, money.  It alway's comes down to that.

In some ways this would ring true when talking therapy options. In my opinion PT is mostly utilized to achieve gains that would benefit independence and ADL's. Where one is able to participate in PT would certainly come down to quality of insurance coverage or the financial situation of the injured person. What about those of us who want more out of recovery no matter our function beyond PT.
A new paradigm needs to be created. The health care related solutions that are currently the norm are outdated. Those of us with SCI need more options that are backed by research and the same networks utilized between health care facilities in the NRN at the local level. Networking and reaching out to traditional gyms in order to build partnerships and continuing education to trainers would cut the cost of delivery considerably, improve the lives of those struggling with SCI, and reduce future health care costs and provide far greater access to practices being employed at research hospitals to a far greater segment of the SCI community.

Hello Mark,
I understand your fustration. I am a T-10 complete. I was injured later in life. I was a daily runner prior to my injury. I have found that SCI is not a big enough group to have special attention. We all go through the initial phases from the day of our injury to a couple years of recovery. I also worked out religously prior to my accident. This gives me the understanding to condition myself so I am independent. I know work out a few days a week. It keeps my mind clear.
I would highly recommend to work out with free weights and get as strong as possible. It will change your life and attitude. I would be overwhelmed if I had movement or sensations come back. Your lucky, most of us are worse off.
Better insurance is not going to give you any better PT. Do it yourself. It took me almost a year to build up,  too master ten pullups. I climb up a nine foot ladder and crank out the pullups. It has strengthen my back and giving me better balance. If you are on meds, try to reduce and eliminate them. I have nerve pain bad , but only take asprin , aleeve and antytriptelene at night to help sleep. It is better to have a clear mind instead of a foggy one.  Have your T-levels checked. SCI patients are usually clinically low. I take Depo shots every two weeks. It has helped my immune system and increased my strength. I hope some of this helps. I wouldn't blame anyone that is not in our shoes. No one understands what it is like to be in a wheelchair everyday. No one should be in a chair and I hope someday the medical industry can change that. I wish you well. You are not alone.
Best Regards,
Joe
Joemonte@nep.net.  My email if you ever have any questions.

Joe-  I know I am lucky. Trust me. I knew I was lucky when every other SCI at inpatient wished they were me when I couldn't move anything below my waist. I was by far the least affected SCI during my stay there and knew it.
You make my point as well. No matter the insurance or money PT in the traditional sense is inadequate. PT that takes approaches SCI aggressively is not widely available. Especially in rural areas such as where I live. You are right. We are' low in numbers and don't present a large enough target market for big expensive facilities.
That is why I suggest using local gyms who can deliver services far cheaper and much more effectively.
I have done all my own rehab since quiting PT in June. I was already doing far more at home prior to leaving therapy so it really wasn't a huge deal. While I have had huge progress, I have always thought that I would benefit from having a personal trainer who understood the intricacies of SCI. The research, methods, and training have been hijacked by a broken health care system.
I don't know. This just seems to make sense to me.

Mark, you are so right. It is a sad situation for all spinal cord people. I remember when I first was hurt and they had me test out wheelchairs. they wanted to know what one I liked. I didn't know the first thing about a wheelchair. I was so banged up with a clam shell on, I could barely push. I had no strength and couldn't even transfer, but they were asking what wheelchair I wanted.

Their is a major problem with the system. You have a really good point about PT's being inadequate. I feel the first problem is they really don't know how damaged someone is or what they need. They give you or teach you the basics,  to get them out of the re-hab. I had a really good re-hab at Magee in Philly. I live in a rural area too and that is why I want to Philly instead of a local rehab. . I was injured at 44 years old and was always a runner and weight lifter. This at least gave me the understanding of what I needed to help myself. Most people don't even have a base to go by in terms of physical training or know how..

The other problem is doctors push so many drugs. I truly believe they want to heavily medicate you so your brain doesn't think. You will then have no pain or emotional thoughts.
They probably should have spinal cord vetrans work with the PT's to help educate on what is needed. I really do pray and hope they someday put all of us back together. I would be thrilled just to have Bowel and blatter function back. I am glad to hear you have feeling, hopefully you can stand and walk a little. I do believe in time some function does come back. I was a T-10 complete. I worked out hard at home and did regain better balance and some core muscles. It at least makes me independent.
They really need to give a longer time frame for PT. It takes so long for the body to start too heal from these major surgeries. Most insurance will not cover but "X" amount of visits. I had Blue Cross/Shield and they were the worst with outpatient Rehab.

As you mentioned, I felt my surgeon was the best too. He was a straight shooter and told me exactly what life was going to be like. I respect him for that. I wasn't happy at the time but I am glad he was upfront. Most doctors beat around the bush.
I wish you and your family a Blessed Holiday season. Take care,
Best Regards,
Joe

The Foundation has been building a network of Community Fitness and Wellness Facilities to supplement the NRN. The staffs are trained in the same techniques. These facilities are open to all, no matter what your injury.

More will come on-line as the money becomes available to get them started.

Find about more and locations here.

Rob

I am sure that I could talk the gym that I attend to get involved. It is attached to a physical therapy clinic. They are partnered with another gym across town as well. They are well situated in a semi retirement community which could also benefit from same type balance, core, and less impactful exercise.
My wife is their pool tech. So I just use their gym. They just got a cool new anti gravity treadmill and already had the biodex balance machine and a pool. They would be a prime candidate. I would be happy to get you or whoever in touch with them. I would love to learn more about this.
I have learned so much during this past year. The doctors initially were not optimistic (to say the least) that I would ever walk again. Well I am a fulltime crutch walker now and there were very specific ways that I exercised and rehabbed. It has required much more than you can possibly hope to do at general PT. I really hope they are able to set this network up. I would love to help you get the word out to promote this type of approach.
Thank you so much for the reply

Hello Mark,
Glad to hear you can crutch walk. I had a set made but it was to much for me. I never heard of the biodex. That sounds really good for any of us. I am surprised none of the Rehab facilities use this. I know it took me a long time just to sit up, let alone move around.
I think one of the issues is our healing factor. So many of us go through one or more major surgeries. It beats our bodies up to take many months to recover. After recovery, this sounds really good.
I have a round soft cushion I have used to help with balance but this sounds more high tech. Are there a lot of spinal cord people in your area? It might be something for the health club to get into and gain more members . I appreciate the feedback. Stay well and Happy Holidays,
Best Regards,
Joe

I am not sure how many of us are here. I live on the eastern shore of md. I am sure there are enough that a place like this would take help greatly. I haven't really seen many though. I was so lucky to have only broken my back as carzy as that may sound. Only others like us would appreciate that sentiment but it is true. I left Shock Trauma for a rehab hospital 2 days after my surgery. 
Recovery is different for everyone. I didn't have any sensation or movement or anal sensation. They diagnosed me as complete. Then one day after therapy I told the PT it felt like I could move but I just wasn't strong enough. To her credit, she believed me and strapped some therapy skates to my feet and I was able to barely slide my legs across the board. Until that point all we had worked on was sitting balance, rolling over, and transfers.
Folks never know what will happen. The by-product of trying to do everything to walk is how great a shape you will be in for whatever level you happen to be. My work outs made living in the wheelchair easier as well. I was able to paddle out and surf on my knees because I was strong enough to crawl in and out of the water and paddle through the surf. It's a win win for sure.

I think the issue is we do not know where to find the information.  I was paraplyzed about 20 months ago.  I to have worked very hard to getting returns.  I go to a local gym 5x's a week generally and do weights, the RX(rt?)6000 which exercises my legs and arms.  I can walk but not very far.  I am starting a program at the Courage Center (ABLE program).  I am hoping this will help but wish I had know alot sooner to apply for a grant.  I would love to get information out to people but just am not good with the internet.  What is NRN?

Hello Becky,
I belong to a few organizations that have loads of information or at least many SCI individuals who can answer questions. W2W is working to walk, Care Cure and Unite to fight paralysis .org are great areas to start.
I feel Clinical trials help all of us too. I get involved with various hospitals and facilities to be a part of many clinical projects. One of the best for me was a Body assessment study. These studies do in depth work to test blood work and many areas of our body. It also educates us with many concerns of SCI. I was injured in 2007 and I am a complete.
You mentioned walking. Mark as well as you can get involved with Lockomat machines. I have seen them help many SCI individuals.
Also, I worked with the Re-Walk mechanical legs. I had a hard time but anyone with any feeling in the legs would master it quick. Check the other sites out when you get a chance. Loads of information. Happy Holidays,
Best Regards,
Joe

Thanks for the information. I will do some research. I am hoping to get
back to walking more than wheeling if I can.

Hello Becky,
Walk as much as you can. I really envy you. It is the pitts being in a chair 24/7. Happy Holidays.!

Thanks. I continue to try but it is exhausting. I know we have to accept
things so mostly I do. You should look at the Courage Center they have a
lot to offer. Not sure where you live.

The NRN is the Nuero Recovery Network.

Is there anyone out there who can help me?  3 months ago I was crutch walking, I am an incomplete C4-C7 my injury was in Agust 2010.  I started getting weaker and weaker 3 months ago.  The doctors keep passing me around.  I have an endoscopy, coloscopy, bladder scope, and tons of blood work.  They can find nothing wrong yet I keep getting sicker and sicker.  The doctors won't order further testing because they can find nothing wrong in the tests they done.  I am TERRIFIED!  I know there is something terribly wrong.  Can anyone suggest a doctor that I could go to that would look for what is wrong with me?  Please someone help.  I can barely now transfer from my chair to the sofa and am losing control of my bladder and bowels.  The only thing that seems to help is antibiotics and now my doctor won't prescribe them because he can find nothing wrong in the tests.  I'm begging for any help.

Debra,
Where do you live and are you seeing a spinal cord doctor? My regular doctor has no clue about spinal cord people. He just helps for common colds.

Are you eating correctly to get all the proper minerals and vitamins? I would highly recommend to see a good spinal cord doctor with all your current tests and results. There are really good places on the east coast.
You might want to post this on Carecure forum. Their are doctors and nurses that read the forum daily. They might have some suggestions for you. I wish you well.
Best Regards,
Joe

Mark, have you tried the Project Walk website? Even if you don't live in California,  Project Walk lists their certified facilities in various parts of the United States:

http://www.projectwalk.org/us-certified-facilities/

In addition to the Project Walk certified facilities there are quite a few other similar facilities such as the Courage Center that Becky mentioned. I am currently at Journey Forward in Canton, MA. Journey Forward has just started to offer scholarships.

If you don't live near any of these facilities, there is a list of Project Walk certified trainers who can work with you privately, perhaps at your home or perhaps at a regular gym where they can help you to use the equipment to your best advantage:

http://www.projectwalk.org/blank/us-certified-trainers/

I could not access this list from the main Project Walk website so I am not certain of the current status of these trainers. However if any of them live near you, I recommend contacting them to see if they can work with you.

Finally I recommend the Feldenkrais method which has been very helpful in improving function in persons with incomplete SCI. For information about the method and a list of practitioners in the U.S. go to this link:

http://www.feldenkrais.com/

Hope this of help.

Rebecca Maria