My Experience At Project Walk

[Chris Chappell]

Hello all. Glad to be back on the forums.


Imagine quads 4yrs post on spin bikes, paras doing leg presses, people who literally couldn't move a muscle or feel a touch a year ago walking unassisted.

Crazy, you say. Doesn't happen. I'm a liar. No, I've seen it with my own eyes. Experienced it firsthand (I rode and pedaled a spin bike in addition to many other exercises). Having spent the better part of a week here I had the opportunity to meet, workout with, have lunch with and talk to these fellow sci sufferers. I have joined their ranks and furthered my belief in recovery through intensive exercise. Project Walk is the real deal!

Let me try and provide you with a succinct and comprehensive review of the realities, pros and cons of Project Walk.

Situated about 5 miles east of the beach in Carlsbad, CA and located in an office park near Palomar Airport Project Walk and its 5000 sq.ft. is the brainchild of fellow New Jerseyian Ted Dardzinski and his wife Tammy. Ted, after working with Mike Thomas (walking quad) and many clients since, has created a customized exercise recovery program for quads and paras whose ultimate goal is to relearn how to walk. Not stumble with a walker or use KAFO braces but walk, as we used to know, unassisted.

How is this done?

Work, work and more work. For roughly three to four hours a day 5 days a week (add one hour for lunch) each client is put through their individual paces (every client is unique as is every injury) with the help of exercise therapists. (To be fair, exercise therapist is not really the term I'd like to use, it doesn't really do them justice, (maybe professional, sci customized personal trainers is better?) but is probably the most accurate. Each trainer, their ranks are building fast, with the guidance of Ted, Tammy and Eric Harness (manager and coordinator) tries to apply their skills in the most effective way possible based on that individual client's strengths, weaknesses and goals. No workout is the same although the principles applied are - strength, stability, balance, coordination. This is accomplished in many ways through many methods. (Too many to mention). Over time as these core areas improve the routine is then altered and advanced to achieve another goal. Whether this takes days, weeks, or most likely months noone yet knows. Again, every client is unique.
Regardless, progress is made for everyone.

Who are the clients?

I was in the minority. At nearly 39yrs old I was close to twice the average age of the majority of clientele. Late teens to early/mid 20's seems to be the norm.
Every client however has one common goal - to walk again. And most of them are busting their ass to do it. Foster (spinewire member) and his son Ryan are making the most of it. As are Joy, Chris, Matt, etc. This is not a place where the meek and mild dwell. Attitude abounds just like a regular gym and everyone is pushing themselves - there is no choice the process towards walking is hard work.

As far as requirements are concerned to be accepted into the Project Walk program the parameters are still being worked out. From what I could tell and in my opinion qualifications should be based upon work ethic, commitment, and support system. Years injured shouldn't be a factor and incompleteness is a judgement call. Is everyone a candidate for Project Walk? No. It's got to be selective and individual. And come to think of it if you join and you're not working hard you should and will be weeded out from those who want it worse than you. Hopefully the integrity of the program will never be compromised.

Investment Cost?

At $3,000 a month it's a steal in relative terms. For 100 hours a month of personal training and guidance the cost breaks down to roughly $30 an hour. Try and hire a personal trainer to do what Project Walk therapists do and it'll probably cost you $60+ (at least in my neighborhood).

So far most insurances will not cover this. Project Walk is a recovery center not a rehab center and is privately funded. The distinction is very important and the plusses and minusses abound.

Realities.

Can you uproot and move to CA for two years (more or less)giving up your current life? Job? Spouse? Family? Are you willing to work harder than you ever have before (pre or post injury)? How bad do you want it and what trade-offs are you willing to make? How's your overall health?


Project Walk is not perfect and doesn't claim to be. They are experiencing some serious growing pains. Administration and organization are their weak points. Also, initial assessment and on going tracking of progress (which are being addressed) are important to its future and attractiveness for additional funding as well as clientele.

Overall Project Walk, as I stated, is the real deal. SCI sufferers are getting better through exercise. So much better that some, not all, are literally back on their feet and walking. It's wonderful to see and amazing to witness what the human body is capable of doing when its nervous system is disrupted and then reengaged and reorganized. I believe, and have told Ted, that his approach and methodology are going to be the cornerstones of our recovery. I'm imagining an explosion in popularity with a Project Walk in every state and sci model center. Why? Because it works.

I've only scratched the surface in this review. Please post any and all questions.

Peace. http://sci.rutgers.edu/forum/images/smilies/cool.gif

And to everyone at Project Walk - thank you for everything and I'll see you in January!

Onward and Upward!

[This message was edited by Chris on Sep 16, 2002 at 03:37 PM.]

[This message was edited by Chris on Sep 16, 2002 at 04:02 PM.]

[Linda]

I've been very interested in Project Walk since I first heard about it. It is very helpful to hear a first hand account from someone who has no vested interest in the organization and who's opinion I respect. The entire premise made a great deal of sense to me and I only wish they would establish a center on the east coast. Please tell us more and keep us informed.

Thanks again,
Linda

[antiquity]

This is good news in light of CR's extensive recovery from physical therapy. Hopefully it will revolutionize the rehab. care industry and force insurance companies to pay so that every new SCI person can have access to facilities like Project Walk that are offering PT intensive services.

Chris, did you talk to any complete quadriplegics who had recovered function?

[KTC]

Chris,

You mentioned talking with Chris while you were there, that's my son, he told me he talked to you. I remembered that you wre going there this week. I'm glad to see your respnse to what you saw. After Christopher and I went to check the place out a few months ago, I posted how impressed we were and what our experience was (which was just like yours and Foster's)and I was quickly ridiculed by Paul for my postings. Christopher started there a month ago and has already had some great progress but I have chosen not to post anything because I don't feel like being attacked again. I really do feel like this is going to make a huge difference in his life and everyone else who goes. Good luck to you.

Kitty

[Chris Chappell]

Seneca, Linda,

Seneca, yes I witnessed paras and quads who are/were completes. Sensory, motor or both. Obviously the more incomplete the faster the recovery but most quads there are motor complete and they have relearned how to walk. One woman is 9yrs post. One guy was 4yrs post. The PW people are forever tweaking their program and hence the duration, repetition and intensity are different for each client. And although the exercises and equipment are not unique (you could conceivably do these at home) what you're paying for, imo, is the customization. For example, I have a pretty strong upper body including triceps so my exercise regime was more focused on my trunk and legs. Someone who has no triceps would most likely work to strengthen them initially. This is a recovery program not a rehabilitation (we've all been brainwashed) program.

Linda,

I agree. East coast, midwest, south, mountain this program should be available to all of us. And, btw, this type of regimen can be done at home although its hard to commit to 4-5hrs per day. Personally, I'm going to talk to the folks at Craig hospital and see if I can get something going locally.

Kitty,

Your son Christopher is doing very well. I have no doubt that he will be back on his feet and walking. I know that he's got some time ahead of him but he's determined, smart and working hard. Astrophysics? C'mon Chris I won't be able to talk to you soon. http://sci.rutgers.edu/forum/images/smilies/wink.gif
And Kitty please disregard the naysayers. They exist in every facet of our lives and aren't worth combating. You and I know the truth.

Onward and Upward!

[Scorpion]

http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif I'll quit working, move to CA to 'excercise and WILL' myself into recovering from SCI. Oh wait, where will I get $3000.00 a month for 2 years? Wait, where will I get two years of free time to run after this scheme? Yes, I use the word scheme purposely. I'll need to see hard scientific research before I believe this thing project works at all, especially for motor completes.

~Rus

"...you're not promised tomorrow, so live for today" (Stuck Mojo)

[Max]

For your good insight...but I think majority(me included) cannot afford this
without help from insurance...
==============================
"It has been said that for the truth to exist, it takes two people - one to speak it...and another to hear it. Mankind will be forever doomed to destruction if we continue to ask for the truth...but then refuse to listen.." Outer Limits( To Tell The Truth )

[Jeremy]

Chris What kind of therapy do they give quads to regain the use of their triceps, wrists, hands and fingers, I'd be interested to see if they get useful function back.

"If the wind could blow my troubles away. I'd stand in front of a hurricane."

[celtic]

I read some good news in my paper today, they have started using treadmill therapy at Glasgow Southern General which just happens to be where I go for check-ups.The report said that 9 people out of 14 succeeded in walking though as is usual with newspaper reports it confuses the issue with statements like "patients selected were also still in the acute phase of their injury having suffered paralysis within the last six years".The Dr interviewed said that "the hope was to restore the function of some neural circuits, though it will not provoke the growth of new ones" He added "the treatment won`t work for everyone, particularly those whose spinal cords have been completely severed" "But we believe it could help dozens of victims who have incomplete injuries." The project will present their results at the end of the month. They hope that the Scottish Executive will fund a much larger study next year. I find the report heartening because usually when I went there they did their best to dampen any enthusiasm I had for recovery.
We are lucky in the UK because this treatment will be done on the NHS for free though if successful I would imagine there will be a huge backlog of people to get through.I`m due to go there next month for a check-up so I will try to find out what I can about the trials.

[FellowHawkeye]

Does a sci-injured person with flaccid muscles respond better to intensive exercise, according to PW? I have spastic muscles who refuse to respond to intensive exercise and believe me I've tried. They become stiff and tired fairly quickly because of growth inhibitors most likely. How would PW get around this? It seems they may only work with those of flaccid muscles.

Jan

[marmalady]

Welcome back, Chris, and thanks for the 'review'! As I beleive Seneca said, this seems to support the news of CR's recoveries, and hopefully will be a major step in combination therapies in the not too distant future!

_____________
Tough times don't last - tough people do.

[Claire]

you actually saw paralyzed paras and quads stand and walk w/o any physical or mechanical assistance? If so,please describe a couple of people including some history ie.how complete/incomplete and prior LOF while paralyzed.
Thanks.

Claire

[Steve]

Chris,
Why didn t we see anything about it on tv news ? Do they keep it secret for the moment?

Thx for your update

[Chris Chappell]

Jan, Scorpion, others

Jan, The trainers at PW will work with all muscle types. They prefer spasticity to flacid but it doesn't really matter. Like you, I've tried to work with and around my spasticity to no avail. At PW spasticity is used to your advantage.

Scorpion, Typically I have shown you respect on your posts. But given your sarcasm and egocentric attitude towards me and my experience you obviously aren't giving me the same. So, what I'll say is this - You're dead WRONG. It's not about "Will" and its not a scheme. It's a real place with real people injured like you and I but getting better with help from physical therapists and not scientists. The 'hard data' is that a C4 motor complete quad who's 4yrs post and been there two months is able to stand up. I saw him do it. Six months from now, who knows? You want to knock it, go ahead. That just means that someone else is recovering faster than you. And as far as the money goes we all have to make decisions in our life concerning things we want and how bad we want them. If you don't feel its worth the investment of time, money and career don't give it a second thought. Go back to your "cure in my lifetime" post and wait. Those at PW are not waiting they're going after it. They have found a way to make it happen. Example, one client sleeps in his car instead of paying for an apartment so he can afford the therapy.

Jeremy, there are many exercises they do for hand and wrist strength / function. Fingers, something I also struggle with, are another matter. Many of the clients gave me suggestions such as stretching, straightening, curling, hanging weights, various splints, etc. Useful function is relative. Personally, sfter a full day of using my hands my fingers spasmed much more than usual.

Onward and Upward!

[foster]

jan my son ryans calf are 15" and quads are 22" and pw loves them. he is not the only one with legs like that. i don't know if this helps.

[foster]

scorpion i quit a job after 21 yrs there. my wife and other son are 3000miles away along with the rest of our family. if you want something you will figure away to do it.you will not believe untill you see for yourself no matter what chris or anyone else tells you. so before you say no way come see it for yourself.


claire mt son is a t9 who was told he was complete and on friday he walked 60 ft with two people under shoulders for balance and i would say that about 40 ft were good steps. today he walked about 80 ft with about 60 ft i would say were good.

[Emi2]

Thanks Chris- this is great news. I'd be there in a second if I could afford it...but as a 20 year old Canadian, its not looking likely. I hope this idea spreads and a centre opens up in Canada. Good Luck in January!

[Snowman]

I look forward to your return in January.

I do want to correct one statement you made. The client who was sleeping in his car (if it is who I am thinking of http://sci.rutgers.edu/forum/images/smilies/wink.gif)was doing it because he bailed out of a bad roommate situation and was not able to find a place in the interim.

Insurance

We have developed and are continuing to refine consultative guidelines for requesting insurance coverage for PW. We currently have several clients who are or will be receiving insurance funding for our program.

Look for a very important post in the near future.

Project Walk will be making an announcement in the near future in regards to an upcoming research/collaboration project with a university.

Eric Harness,CSCS
Project Walk (http://www.projectwalk.org)

[PN]

Kitty,

Ridicule, no. I was just stating the facts and I still stand, or sit, by my earlier post. I would not travel anywhere on your recommendation, and I think that you are the wrong messenger since you still support and endorse the criminals who operated the clinics in Utah and Idaho that were treating paralyzed patients with Neuralyn. By the way, you left out Nick Danger, aka Steve Crowder.

I am not going to criticize Project Walk because I do not have enough information to determine how effectively their brand of physical therapy works for people with spinal cord injuries. A good question was asked when it came to Project Walk's approach regarding the recovery of arm, hand, wrist, and finger function. If Project Walk is "The Real Deal," they will have to open new centers in different states to keep up with the demand. I would also like to see a national investigative news team visit Project Walk so we can get a more complete story about, understanding of, and report on its success. Is that too much to ask for?

At the present time my mind is open and my position on Project Walk is neutral. Kitty, if you can't stand the heat, get the hell out of the kitchen, which I think you already have.

Cheers, PN

http://carecure.org/forum/showpost.php?p=77242

[rbyrd49100]

I definitely think there is something to this. I would take Steve there in a minute if I could learn the program in two weeks enough to implement it at home. However, since Steve is still considered a T 3-4 complete(He has regained some sensory including bowel and bladder, but no motor), he is not a candidate for their program. I would rather put my time and resources into something local that might build into a similar project. One that does not exclude so called "complete" injuries. I feel this intense type of program could help all SCI persons to some degree.

Maybe people in each city could start their own program. Here in Houston, we could maybe all move into a big ol' caregiving/therapy hippy compound!

I can make enough Chicken & Dumplings or Beef Stew to feed about 50 people:)

Russ Byrd

[dahliasinbloom]

The project sounds very exciting.

You mentioned that project walk will work with flaccid muscle. Mine below the injury are all completely flaccid. Do you know how they are working with deinnervated, flaccid muscle - how can you really exercise a flaccid muscle? Other than the use of extremely high-powered electric stim and maybe braces or other orthotic devices, what's left?

Thanks, Jan

[deanchinaski]

I also have the super flaccid muscle below my injury site. I have the lower motor neuron damage. Do you think the PW people can help with the flacid muscles?

[Xturnnal]

I have no feeling or use of anything below the point of injury. Fortunetly i can afford this type of treatment and iam willing to do whatever it takes to get back on my feet. Do u suggest i get there asap? I would gladly put my life on hold for as long as necessary to get back on my feet.

Thanx
Brian

[judykerperien]

Chris, Did you fly out or drive? Where did you stay at? Very informative post thank you for keeping everyone updated. Judy K

[Scorpion]

Chris, all I can say is, I can't believe it until I see hard, scientific evidence. In other words, a clinical trial that documents results. If I believed it worked, I'd find a way to do it. Meanwhile, I'm trying to pay my rent, etc etc. 12 years post, I don't see it working for me, at least not with the little hearsay and no scientific documentation that I've seen. I mean, where's the explanation of HOW it works? If it works so well, why isn't some company funding a study?

So, I'll wait and see what happens with Project Walk. I don't care if you or anyone else thinks I'm wasting my life. You don't know me. My attitude wasn't directed at you, Chris. It was directed at Project Walk, and what I see as a pipedream, money-making scheme. If it turns out I'm wrong, great. Until then, I'll try and live my life as I see fit, and I don't need people like you acting like you've found the Holy Grail and I'm an idiot for doubting it. So, I'm a "Doubting Thomas". So, I'm cautious with my hopes. So, I don't jump at the first thing that claims "recovery". So f*cking what. I can wait a while to see evidence that concinces ME before I go on some quixotic quest, thanks.

With that, I'm out of this thread. Good luck to those of you pursuing Project Walk. I hope I'm wrong, for your sake.

~Rus

"...you're not promised tomorrow, so live for today" (Stuck Mojo)

[Shannon]

Chris, I checked out the Project Walk website and found out that it is NOT for everyone. In a different thread you said that we all have it in us to heal ourselves. The truth is, many of us don't. According to Project Walk's website, the best client is:
1. Injured less than a year, but no more than 2 years.
2. INCOMPLETE with C5 or below.
3. Movement in arms.
4. Some feeling/sensation and/or movement in lower extremities
etc, etc.
This program is CLEARLY not for me, and many, many others here. It's wonderful if it has helped you and others, but it's very limited in the number of people it can help, and I think that's an important thing that has been left out here.

[tvot]

"Is everyone a candidate for Project Walk? No. It's got to be selective and individual."
Another words you need to be incomplete and then when you regain some new movement your put up on one of their pedestals as some kind of miracle. 25 years ago people were flying to Russia for the same treatment. This is nothing new.

[tvot]

Beaker's reply says it all, I should have went to their site first. Good luck to those recently injuried, if you can afford it, it should help.

[antiquity]

Originally posted by Snowman:


_Look for a very important post in the near future._

Project Walk will be making an announcement in the near future in regards to an upcoming research/collaboration project with a university.

Eric Harness,CSCS
http://www.projectwalk.org

Great! http://sci.rutgers.edu/forum/images/smilies/smile.gif

[James Kelly]

For what it's worth, I correspond with a gentleman who I believe is very reliable and objective. His daughter, who was originally diagnosed a complete, has been at PW for several months, she now is definitely incomplete, as the following excerpt indicates.

"Her doctors were totally impressed with her progress and Project Walk. One stated that Project Walk was the most significant therapy program going on today in the sci community. She was originally diagnosed as C6 Complete but has already improved to C8-T1 incomplete. They've decided to start a research program with PW to investigate why they are getting the results that they are."

I do not believe that PW, McDonald's bike (actually he copied someone else's design), or any rehab can regenerate the spinal cord...certainly not to any significant degree. However, I'm fully convinced that many of us, completes and incompletes, retain recoverable neural circuits long after injury that are needlessly dysfuntional due to metabolic impairment, the disruption of electrical potentials, chronic inflammation, or a section of the cord remaining in spinal shock. In my mind no other reason could explain reports of functional improvement years after the injury was thought to have permanently stablized. (note: the retraining of the brain to use existing neural circuits other than those originally used might explain very slow, very gradual improvements. But reports of people getting sensation, then movement in their toes, which quickly spreads to their feet and legs must be due to other factors affecting the existing cord.

As Reeve and other have shown, certain rehab techniques can yield functional results long after this mythical window has supposedly closed. But if the result of such therapies are due to anything other than retraining the brain, repetitious rehab would be the least effective way of affecting this change (although for the present it's all we've got!).

James Kelly

[Claire]

I'm happy for your son's good fortune. Ah, it's great to be tenacious at times!

Claire

[chastev8]

If they go in with a university, does that mean that they will be able to accept inusrance and medicare??

[Snowman]

Our website has not been updated in some time...appoximately May/June.

We are currently working with several people who were originally diagnosed as "complete", all of these clients would now be listed as "incomplete".

We have clients who have injuries above C5, our highest currently is C3.

Our 2 year or less requirement is due to our belief that these people have the greatest chance for full recovery. However, we have more than 1 client who are well past 2 years post and making significant improvements in function.

Press release out next week

Project Walk will be issuing a press release regarding our involvement in the research project James Kelly illuded to in his post.

tvot

There are no miracles at PW...everyone who is here busts their ass 3-4 hours a day to get where they are.


Thank you for all your interest and support for our program.

Eric Harness,CSCS
Project Walk (http://www.projectwalk.org)

[antiquity]

Posted by James Kelly:
I do not believe that PW, McDonald's bike (actually he copied someone else's design), or any rehab can regenerate the spinal cord...certainly not to any significant degree. However, I'm fully convinced that many of us, completes and incompletes, retain recoverable neural circuits long after injury that are needlessly dysfuntional due to metabolic impairment, the disruption of electrical potentials, chronic inflammation, or a section of the cord remaining in spinal shock.

Thanks JK, I agree. I think it is important to emphasize that this is not a cure. Intense physical therapy cannot regenerate nerve cells, what it can do is help the body use its "built in" healing capacity to work around the damage and make functional connections. The nervous system is incredibly plastic meaning that some aspects can function independently of direction from the brain. Taking advantage of this is key to any type of CNS recovery.

CR has been participating in Project Walk's type of therapy for 5 years, he has made significant strides but he can neither walk nor move any part of his body below his injury level in a useful way. Because this therapy works very well for some doesn't mean it will work for everyone. Since no two spinal cord injuries are exacty alike it makes sense that everyones "built in" ability to heal from within would vary as well. I think it's important to avoid labeling those whose bodies can't rewire themselves, for whatever reason, as unmotivated or lazy. Intense physical therapy has increduble potential for most SCI's, those with fairly new injuries in particular, but there are many whose bodies cannot respond as positively due to pain, medication, bone abnormalities, nutritional deficits, contractures, etc., through no fault of their own.

[Arturo]

If you look at the home page of CareCure, Wise Young has
published a paper with several other papers talking about
"The Effects of Intensive Training on Motor Recover" this is interesting
reading. It is a PDF file about 50 pages long. It tries to explain the
recover issue. Burnie Brucker said he was making more success
with biofeedback with patients 5-7 years post the persons 1-2 years.
Apparently, It takes longer than thought of in the past for the average person
to come out of spinal shock. At that point, the brain must be retrained for
the movement of muscle when it had forgotten how to control nerve.

Some individuals will get recovery in the first 18 months. If they are helped
by proper "pattern training (muscle reeducation & neuro-reeducation combined)"
they can get significant recovery. This not magical but good physical therapy
and the bodies ability to recover from trauma.

[Polett]

I truly believe that INTENSE rehab can go a long way.

Nobody can garantee we will walk, run, etc. But for what i gather, PW promises to do ALL THEY CAN to work with YOU in achieving your own personal goal. I wish WE warent so quick at judging alternatives that we DON'T know FIRST hand how good they r. Specialy cause whats good for one may be bad for the other.

I for one, c PW offering EXERCISE... they r NOT saying, wheel in and walk out so, if they r already being HONEST about what there system/way/treatment/goal/etc. are, why beat the hell out of them for doing something GOOD??????

Beaker: Im 14 years post and they are willing to work with me. As soon as I can afford or work on moving there, I'll go. (dont think it can happen for some time but...ya never know)


...and the soul afraid of dyin'... That never learns to live...

[dahliasinbloom]

I do believe this is an exciting possibility for many people and will definitely be part of the total equation for a cure someday, but I agree with James Kelly and Seneca that it is not by itself a cure and will not regenerate the spinal cord. Seneca's post (of which I completely agree) reads:

"Intense physical therapy has increduble potential for most SCI's, those with fairly new injuries in particular, but there are many whose bodies cannot respond as positively due to pain, medication, bone abnormalities, nutritional deficits, contractures, etc., through no fault of their own"

One thing I'd like to add. The most obvious barrier to making progress for some people is simply the nature of their injury. The most extreme example would be a patient whose spinal cord has been completely severed.

Hard work goes a long way, but I honestly believe if it could make someone with my injury walk again unassisted, I would have been walking long ago. Please, someone correct me if you think I'm wrong. I am T12 complete and totally flaccid below the level of injury.... nothing to work with here.

[Chris Chappell]

A couple of comments,

Jan, my best advice to you would be to go and check it out for a week. Nothing ventured, nothing gained right. I will tell you that there are clients at PW who are flacid yet seeing improvement. I think its very individual which is kind of a blessing and a curse.

Seneca, smartypants, as usual you're exactly right except on one point. I've seen part of the CR video and you will see him moving his legs, which have 5lb weights on them, while he's in the pool. Pretty neat. He can also move a finger, arm and has hot/cold pin prick sensation.

Polett, GREAT post, you're right on. I like your it's not "wheel in, walk out" analogy. That's exactly what it isn't. No promises. Hard work and let's see what the body gives us. They are very honest. No schemes, no magic.

JK, also a solid post. Your conceptual understanding is exactly right. This is in no way a regeneration therapy it is a recovery therapy. Very distinctive differences as you've pointed out.

tvot, Beaker, I wouldn't tie myself to the PW website selection criteria solely. PW reviews each client's potential acceptance on an individual basis.

judyk, I drove out (PW was the last leg of our trip) and we stayed up north about an hour away in Laguna Beach. I commuted each day to PW. Although PW's website gives you hotel ideas. If you're a AAA member you can call them for assistance as well.

Xturnal, Yes, you should check it out as soon as possible. My guess is that PW, come Jan/Feb of 2003 will be jammed. It may be tough to get scheduled. Give them a call or e-mail.

Rev.Dean, I think you should at least check it out if you can. Never say never.

Steve, I think there's been local media coverage in the San Diego area. Nothing national that I know of.

Claire, yes I personally saw paralyzed paras and quads from C3 to T12 standing, riding spin bikes unassisted (yours truly), walking, crawling, etc. Check out the website and read the personal stories.

To wrap up please remember this simple adage that runs through my mind constantly "If you want to learn how to walk you have to practice walking"

And finally, at the very least everyone here I hope realizes that even if we had a bonafide "cure" tomorrow it's going to take us, my guess, a minimum of at least six months of intensive therapy just trying to regain our strength to be able to support our body weight. I didn't realize how weak I was until I went to PW and did the "wall".

Peace.

Onward and Upward!

[Mike C]

I just can´t shoot down anybody who has such enthusiasm. But, for me, if I wanted to join such a program, I´m going to have to write a best seller. 2 years costs about $72.000. Then you have to live...rent, food, med costs, car..and and and. Of course if you only need 1 year your costs are halved right? Lol. Now if you have a settlement because of your injury or were insured, then why not try. You have nothing to lose. For the other SCI´s out there, well, it´s a challenge.

[Chris Chappell]

Mike,

Being from Germany do you have access to rehab facilities? Gait trainers? treadmill training? The Europeans invented this type of rehab/recovery (Laufband) and I'm pretty sure that you guys have much better programs for intensive physical therapy than we do here in the states.

And let me clarify a couple of things. Yes, to most, including myself (I have a full-time job) a pilgrimmage to PW isn't easy financially, geographically, emotionally, etc. It's a major life change with no guaranty of success (walking). So we have to ask ourselves and decide some pretty big questions. The big one being finance.

Let me offer a couple of ideas. 1. What PW is doing is not rocket science Pt. Basics are really what they're about. Strength, stability, balance, coordination through many exercises that can be learned on your own. The operative word in that previous sentence being "can" or should I say will. What I think the people at PW offer is their guidance, EXPERIENCE with quads and paras, hands on approach, and the fact that you're paying them to kick your ass. Will you kick your own ass for four hours a day, five days a week? For me, I don't think I can. I perform better being coached and in an environment where everyone is doing the same thing and trying to achieve the same goal.

Overall, if you don't have the money and for whatever the reason can't make the commitment try and get creative at home. Many on these forums have and in essence have created their own home based Project Walk.

2. Insurance. I'm personally working with my insurance company to see if they'll fund any of this. I'm drafting a proposal, cost/benefit analysis and common sense reasoning to make my case. I will ask them to fully cover the cost. What's the worst they can say? No. Then ask why and for maybe a little less. And I'll make sure that I'm far enough up the ladder to have someone in a decision making position hear my story. Not some flunky case manager who...

In summary if you can't make it to PW then create your own. The proof is in the exercise, its intensity, duration, and repetition not in the location.

However, if you can afford it in some way, shape, or form get to the people at PW. I think they're worth the investment. http://sci.rutgers.edu/forum/images/smilies/cool.gif

Onward and Upward!

[Chris Chappell]

Has anyone signed up or decided to visit PW soon?

Onward and Upward!

[Dmitriy]

How much does one month at PW cost? Is it $3000 now? Or is it still $2000 as their website say? Why not make a franchise, say near Philadelphia? Rent a space and hire trainers trained by those from PW of California? How many people in this area would be able to team up and work out?

One here,
Dmitriy

[T-Bone]

We are putting our ducks in a row to go to project walk and the hard part to figure out housing and everyday transportation. Can anyone give me any advise on the renting/leasing situation near the facility? It would be nice to organize a group to lease a house that is handicap accessible and to do this as a team and make it into a true boot camp atmosphere. I was in the military and played sports my whole life and I think the motivation of a team is very important. Many hands make light work.

[foster]

Tbone my son and I are here for a year or so. We are living in Vista about 20 min. away. The rent is $860 a month for a handicap apt. If you want to e-mail me and and I can give you more info.Have you visit.

[Chris Chappell]

Bumping this up.

Fortitudine Vincimus
(Through endurance we conquer)

[betheny]

I know you're there, and I know you're tired, but it's Christmas! Let us know how it's going!

For Christmas, my husband joined me to a swanky gym and 24 sessions w/ a personal trainer. Do you all have any suggesions on how I can maximize this? I know from experience that intense PT works, I was in the VA STAT research study. 1 year later, I'm still a stumbling quad. I did great while the PT's were there with their encouragement and high expectations. I also kicked unexpected butt in rehab. It's home where I can't get motivated. It's so hard and so slow (and I apologize to those who are saying Whaahhh...wish I had your return, lazy dog). PW is not an option for me, husband, kids, pets, no $$$. We should develop a PT plan for those like me, wanting to try but unsure how to begin. We could even be each other's online support group and in absentia butt-kickers. Anyone interested? Betheny And for those out at PW, or trying to figure out how to swing it-GO FOR IT!!! I believe it's not the type of move you'll regret.

[Schmeky]

I cannot find your e-mail address, but if you will e-mail me your phone number, I promise I will call you tonight on my dime.

[Chris Chappell]

Interesting idea Betheny.

If anyone wants to discuss this is further I can be reached at my office
1-800-965-3028 ext. 644 or e-mail: christopher.d.chappell@smithbarney.com

Peace.

Fortitudine Vincimus
(Through endurance we conquer)

[dogger]

In Australia , i don't seem to be able to find any PT's who can help me set up a program of my own , so i will be watching this space with interest !
thank you
dogger

every day i wake up is a good one .

[T-Bone]

Great Idea Bethany!!

[betheny]

And of course, I am going out of town and can't pursue it. I'm headed for the hinterlands of Kansas where computers haven't been invented. (OK, they have-but not at any of my relative's houses). I'll contact you all when I get back, I am really stoked with this idea. Dogger, you and I are about the same functionally. Let's talk amongst ourselves, pick some brains, and come up with a plan! We're not going to get any of the PW people to post exactly what they're doing out there, it's a business and it's proprietary. Jeez, they think they want money...and I need it for free. The trainer I got for Christmas is said to have SCI experience, I can't start until the 1st of the year. But he might be a good resource. By now we probably all have PT friends w/ suggestions. There's not much you can't do with a few good brains, and willing bodies to test the results. Worst case, we're in a lot better condition 6 mo's from now. It's a win-win proposition. Put on your thinking caps-Betheny

[betheny]

Let's pursue the topic of developing our own programs out of the shadows, and quit cluttering Chris' nice PW topic. What do we call it? Project Walk Wannabes?No, how about Developing a PT Program ? See ya there-Betheny

[betheny]

Or as my son says, a PT Club. We could all try our hardest and provide online support and knowledge base, report what seems to be working, and encourage each other. T-Bone is right, a boot camp would be so great. Some things to consider- what resources do you each have? E.g. access to trainers, PT friends, equipment that should be tried out and evaluated, routines to suggest...I haven't seen my new gym yet, it opens on the 1st. It has a pool, weight machines & weights, regular cardio stuff. I don't know yet what I'll be able to use. I also get 24 visits w/ a personal trainer. Sadly enough, my husband reports that the trainer is weird looking. But I digress...:) My last bout of PT involved a stationary bike (w/ one foot ace-bandaged to the pedal), a little rowing machine (should have been more, it works everything), a lot of Thera-ball balancing, stair climbing.
I'll be offline for a week or so. I hope to come back and find that the guys of carecure have banded together and devised a solution to our problems. Between all of us SCI people, we must have seen every type of PT imaginable. If we can just remember it-Betheny Aargh...I was trying to move this topic, and got distracted. Look under Developing a PT program on Cure. Moderator, can we move this post?

[Chris Chappell]

The name I'm thinking of using is "The Next Step" (in SCI recovery).

Fortitudine Vincimus
(Through endurance we conquer)

[Xturnnal]

When are u planning on going out to cali?

[southerncaliboy]

I have two friends there tim crane ,and angela rockwood and they talk highly about the facility

[T-Bone]

The only thing holding us up is housing and transportation once we got my brother down there. Everyone in our family works and has to stay home. A dormatory program world be great.

[Christopher Paddon]

It may interest some of you that I asked about acceptance of a complete T7 20 years after injury (ie like myself)

The reply was: "I WISH IT WAS YES, BUT THIS PROGRAM ISN'T A CURE FOR LONG TIME SCI, BUT A PROGRAM TO CHANGE THE FUTURE OF SCI TREATMENT FOR THOSE THAT HAVE RECENTLY BEEN INJURED."

[Lshall82978@yahoo.com]

Originally posted by Chris2:

It may interest some of you that I asked about acceptance of a complete T7 20 years after injury (ie like myself)

The reply was: "I WISH IT WAS YES, BUT THIS PROGRAM ISN'T A CURE FOR LONG TIME SCI, BUT A PROGRAM TO CHANGE THE FUTURE OF SCI TREATMENT FOR THOSE THAT HAVE RECENTLY BEEN INJURED."

How screwed up is that? It will benefit some, but not all. That's just wrong. http://sci.rutgers.edu/forum/images/smilies/rolleyes.gif

[Snowman]

At the present time we are not working with long term SCI clients (i.e 5+ years). This is due to the fact that in order to continue to prove the efficacy of our program we must have a focus, that focus is on the newly injured.

Why only newly injured SCIs?
Because we believe that they have the greatest potential for recovery using our method.

Does this mean that we will never take older SCIs?
Hopefully, in the future our method will be adopted by the rehabilitation community and long term SCIs will be able to take advantage of our program.

http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif

Eric Harness,CSCS
Project Walk (http://www.projectwalk.org)

[rbyrd49100]

I think what they mean to say is the patients who have to potential to show the most rapid and most dramatic recovery are those that are recently injured. This is the same type of thinking that they use for clinical trials etc. They want the results to be impressive so the treatment will become mainstream. This can only benefit everyone in the long term if it is effective. I don't think they or anyone else can accurately predict if it could benefit long term SCI patients because there is no precedent.

Besides, it is not really a cure for SCI. Just a step towrds the cure. When some of these other therapies are available (OEG ETC), people who recieve them will theoretically be "newly injured".

They have said they use simple ideas and hard work. Rather than hitching up the truck and moving to CA, why not try to make it happen at home?

Russ Byrd

[Christopher Paddon]

Hi Russell

Since my accident my only excercise has been

1) pushing my chair round the block
2) stretches to my legs when I first go to bed
3) standing frame and leg braces

What can be done at home? I see the threads on home training but if you're a complete injury I can't see where to start

[gpbullock]

one of the most beneficial things I've done has been to start crawling, and weight lifting while sitting on the floor. When I first started I could barely maintain my balance while on all fours. Just make sure and use ace bandages on your knees when you start, otherwise you can lose some skin. Try shifting your weight onto one knee while pulling/picking up your other knee. When lifting, use light 8-10 pound dumbells if possible and do compound motions like a deltoid military press and then a chest press in one motion. The idea is to make your balance shift forcing your abdominals to work. these are two things I do in my own daily routine.

[joseph]

but I have a question.Are all the different kinds of workouts providing folks with new connections and therefore more funtional recovery or is it taking what they have and making it stronger?

[Chris Chappell]

Joseph. New connections, I don't think so. Enhanced signals, yes. Maximized connectivity, yes. Balance, strength, stamina, coordination, yes.
Regeneration, NO. Recovery, yes.

Crudely, I think of it this way. Let's say you've got ten connections between your brain and your foot. Five for sensory, five for motor (movement). Nine connections get crushed / impaired, one remaining. The one remaining is then trained, through intensive exercise, to carry the load of the damaged connections. Will that one connection be able to carry 100% of the missing sensory / motor recovery?, no, unlikely. However, could that one connection carry 40% of the missing connectivity resulting in a 30% gain in either sensory or motor recovery? yes, I think so. Or, could the exercise wake up some dormant connections that aren't being stimulated? This is what Dr. McDonald and the folks at PW are doing independent of each other.

Chris2, there have been numerous posts concerning home based recovery programs. I suggest reading Debbie7 and her "gait training" thread along with mine "your own recovery program" to get some ideas on what you can do. Also, without equipment you can do chair pushups, floor pushups, stretching, range of motion, etc. Try and get creative.

Good luck.

Fortitudine Vincimus
(Through endurance we conquer)

[Christopher Paddon]

By the way, when I printed Project Walk's reply to me it was in no way intended as a criticism of PW. Some people had been asking what the entry requirements were, that's all.

[Chris Chappell]

bump for newer members

[Chris Chappell]

bump for any newbies considering going.

[Chris Chappell]

bump for newer members. Notice date when topic started.

I'll bump a few more related to gait training as well.

[teesieme]

I see it has been awhile since someone posted on this and I didn't read through each page but what I would like to ask, is how come in the PW site, it states the average para. gets two hours a day, three days a week except for upper extremity needs otherwise getting 3 hours per day? It was said that this is a daily deal, is it for some and not for others?

[Snowman]

"Project Walk is not perfect and doesn't claim to be. They are experiencing some serious growing pains. Administration and organization are their weak points. Also, initial assessment and on going tracking of progress (which are being addressed) are important to its future and attractiveness for additional funding as well as clientele."

In the past year these points have been addressed and we feel are now no longer an issue.


"is how come in the PW site, it states the average para. gets two hours a day, three days a week except for upper extremity needs otherwise getting 3 hours per day? It was said that this is a daily deal, is it for some and not for others?"

The length of each appointment and the frequency per week are both based on our initial assessment of your abilities. As you progress through the program these times may increase or decrease depending upon your adaptation to the stimuli provided. For example: As a client begins to gain control over muscles he/she may need more time off to rest before the next session.

So, yes, it is a daily deal for some and not for others. http://sci.rutgers.edu/forum/images/smilies/wink.gif

http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif

Eric Harness,CSCS
Project Walk™ (http://www.projectwalk.org)

[joesmom]

Chris and all others:
HOORAY!!!! Some one finally noticed that Project Walk does WORK!!!
I guess you will be joining my son, Joe (T4 Complete) in January as he just finished his trial week and goes back in January....after we have remodeled his living quarters. He will be relocating from Hollister, CA to Escondido, about 15 minutes from Project Walk. Chris, you and Joe are making the right choice. Only good will come from your time there!
Joe just got home Saturday and Sunday we did the 2 hour routine they gave him to do until he starts in January!!! WOW....what a difference, what strength....I am so proud of Joe already. He was injured 6 days before his 18th birthday and it would have been easy and understandable for him to drop off into depression and despair! I can't imagine turning 18 and suddenly not walking.
Project Walk gave my son hope, and hope brings strength and faith...it also "enables" miracles. If nothing else, Joey will become one of the healthiest paraplegics around....that is if you can catch him!
Thank god for Project Walk.
Toni Joes Mom

[dcstve]

Friends:

there are other programs available for which you are not billed for insurance and do not have to pay.These include research programs as well as volunteer programs that others have mentioned.

As a researcher performing research with stroke and SCI patients, I could not imagine charging folks for something that I myself do not know works. Similarly, I can say that there are many of us who do not view the "Project Walks," "Sci-Steps," and the like very positively, as they charge for programs that are still considered experimental and are not medically based.

I mention this as a reminder to folks to be careful!!

Steve

[Rick1]

To dcstve:

I have sought out research programs, and either been denied access altogether because I didn't fit their tight parameters; or I've been allowed to participate and actually realized some benefit, only to be denied continued progress because of the limited scope of the "research project." Explain those ethics if you can.

I'm guessing that someone is paying you to conduct research that you don't know works. Possibly with money that has been contributed by the likes of those you are addressing here. You're certainly entitled to your "researcher" opinion, but I don't need any more "self-serving-research" to know that exercise is good and immobility is not.

The main guideline that I use in my personal, ever-evolving fitness program is whether a particular activity would help or hinder a healthy able-bodied person. Purposeful exercise meets that criteria just as conclusively as breathing does.

I can't afford to attend any of these comprehensive, regimental programs, but I welcome their existence because they fill a critical void in the neurological recovery process.

Research on, but try not to impose your personal limits on those of us living in the real world.

The fight among men is not of good and evil, but opposing ideas of good.

[Jesse's Mom]

dcstve
The first words that came to my mind when I read your post was "eat sh** dcstve. Then decided that might be a little too much. Then I was going to ignore you all together, I am not very articulate. Then I got pissed and that is the point I am at right now. Have you ever been to this web site and read posts by SCI nurses and Dr. Young. They think that places that work clients like PW and sci step are good. They are in the medical field but then who is to say that for something like project walk or sci step to be successful someone would have to have a DR. in front of their name or a PhD. behind it. Know what that PHD really stands for dcstve? I am sure you do. Do you have a spinal cord injury? Just because you work with stroke and sci patients doesnt mean that you have the right to come here and preach your fricking little words of wisdom. Since when is good hard work and intense physical exercise experimental. And have you ever visited a place like PW or Sci step? My guess is not. Go there once and then form your opinion on whether these programs work. Listen to the people that have been there. If my son wasnt there right now, he would be sitting in his wheelchair as I let off my steam. Instead he works out 3 hours a day with trained specialists. NO, it isnt a medically based center. But you know what he got when he was at TIRR?? He learned how to jump curbs in his wheel chair, transfer from his wheelchair, take cookies out of the oven from his wheelchair. Need I go on? Project Walk is the best place he could be right now at this point in his life and I am glad I was able to get him there. I am not trying to bad mouth research. Go for it. Just dont you be bad mouthing centers like PW and Sci Step when they are helping those people that come there for good hard exercise. And YES, they are getting better. My son is proof. So if you come back and blast me or someone else does that agrees with you and not with me, so be it. Let me have it. I dont care anymore. But the best thing that has happened in my life and my sons life in the past 11 months is Project Walk.

[Snowman]

Originally posted by dcstve:


experimental and are not medically based.

Steve

What exactly do you consider "medically based"? Every research project ever done has shown exercise to be of benefit to ALL persons whether disabled or not. Why don't you delve a little deeper into the research that has been done and is posted on this board before you accuse Project Walk of not being medically based.

Is it ethical of researchers to subject people to experiments that may or may not leave them worse off than they were before? I guarantee that NO ONE has left our facility worse than they were when they came in.

Exactly what type of "research" are you performing and where?

Step up to the plate Steve and take a few pitches....don't spout off and run.

http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif

Eric Harness,CSCS
Project Walk™ (http://www.projectwalk.org)

[dcstve]

Hi Rick. Of course, I don't know much about the research program in which you were involved, and that ultimately excluded you. However, I suspect that your exclusion had less to do with "ethics" and more to do with the goals of the study, and science in general. A goal of clinical research is usually to see if something works for, hopefully, the eventual betterment of all. A fortunate consequence of much of this work is that people can get "free therapy" out of such studies. To accomplish this, a particular study is performed to determine efficacy with a particular, very specific, patient sample. If you improve or your status changes, you will usually be excluded as you will no longer meet the narrow criteria that the researchers employ. While this is very unfortunate, the research study's ultimate goal is not to give free care to you, but to advance knowledge on a long-term, incremental basis to help everyone. Your expectation for free, additional care from the research study is understandable, but was probably not a goal of the study, and probably would have not helped the other folks enrolled or on the study waiting list. Furthermore, if advances are to be made, it must occur in an incremental, well-controlled way. This is not a matter of ethics, but good science...I am not sure that keeping you in the study if you were outside of study criteria would have ultimately met this goal.

With the above being said, when patients show improvements, we usually carefully document patients' progress and send a note to the pateient's physician, so that additional care can be reimbursed by managed care...I am sorry that this was not done in your case.

Research exists for the purpose of answering a question, such as whether a particular regimen can affect function. Having worked with mostly indigent, disabled individuals (about as "real world" as it gets) for many years (my research is funded through donated time by myself and my team), I am excited when folks come along who can do better or more cross-cutting research that can "fill a void" that my team cannot meet with its limited resources. These free research programs, like the one in which you participated, will certainly advance knowledge as noted above. I think it unfortunate, though, when services crop up that charge folks thousands of dollars for regimens that may or may not work, and that sometimes do not have basic medical supervision, such as a physiatrist. In this forum, many such programs highlight small or limited cases of improvement that,in he medical profession, would not mean much and,moreimportantly, makefew if any meaningful improvements in patients' quality of life. Indeed, if these same reports had to stand up to any sort of test of scientific rigor, I am afraid that many would not do very well.

I think that it is great if folks have the resources to spend money to attend such programs, and I hope they get better. People should also know that many of these programs are not scientifically based and arefor profit in every sense of the word. Many are essentially playing on individual hopes rather than betterment of our fair SCI community.

Having a loved one with a disability, I would certainly want to know the medical efficacy and opinions of others in the profession before spending thousands of dollars on a particular regimen.

[dcstve]

Dear Eric:

Thanks so much for your e-mail. In going to your website, I noted that one of the techniques that you employ, and presumably charge for, is that of the Dardzinski technique. By doing a simple Medline search, I was able to find NO studies supporting its efficacy,either in the individuals that you admit to your program, or in SCI patients in general. This would be the evidence of which I speak...

I am not interested in criticizing you or your institute, nor was that the intention of my "post." However, I also cannot ethically recommend a program to my patients that charge people for a therapy whose safety and efficacy has apparently not been tested in randomized controlled trials.

The other important aspect that one notes is that the Dardzinski technique for which you charge was developed by your institute's co-founders. One wonders, if there is limited evidence supporting its efficacy, why your institute would, nonetheless, offer it (thats a rhetorical question)? It certainly helps your institutes cofounders to offer their technique, but my suspicion is that you pobably do not review the evidence base supporting it with your participants.

Warmest regards.
[This message was edited by dcstve on 11-25-03 at 06:22 PM.]

[This message was edited by dcstve on 11-25-03 at 06:23 PM.]

[This message was edited by dcstve on 11-25-03 at 06:26 PM.]

[This message was edited by dcstve on 11-25-03 at 06:27 PM.]

[dcstve]

Hi Jesse's mom. As I noted to others, I think it is very nice that your son is doing well. Obviously you have resources that many of my patients don't have (otherwise everyone would be at Project Walk). However, the effectiveness of the techniques they and others use have not been validated, so it is hard for me to justify having my patients spend what would be a considerable amount of money for them to participate.

In re-reading my post, I can't find any "bad mouthing" of these programs, as you speculated. You and others have similarly made some interesting speculations about research, as well as using some interesting phrasologies.

Good luck with your rehab efforts.

[Snowman]

Steve

Are you going to answer my question? What research are you involved in? Where is it located (university,institute,etc.)? Has it shown any benefit to this community?

You say you're a volunteer...so how do you make a living?

What is your degree in?

I have answered these questions in the past on this and other boards...will you?

http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif

Eric Harness,CSCS
Project Walk™ (http://www.projectwalk.org)

[dcstve]

Hi Eric. I have a PhD, a MD, and am fellowship trained in rehabilitation research (I always think it is remarkable when folks criticize "researchers"...I was not trained as one, but now really enjoy learning new things and seeing people benefit). I also, in a former life was an exercise physiologist.

I have participated in/co-authored several studies including examining efficacy of mats for pressure ulcers and treadmill assisted ambulation.

I am uncertain of the relevance of my, yours, or others' academic histories - I have a disabled relative who never went to HS who can speak better about the lived experience of being disabled than I ever could.

So I will leave it at that and go have dinner. Night all.

PS - I never said that I volunteer...I said that I donate my time to research, meaning that I am not paid or funded to do research, but do it because I find it important.

[This message was edited by dcstve on 11-25-03 at 06:58 PM.]

[NoDecafPlz]

Chris, I did go to the website. There really isn't long-term lodging in the area is there?
I saw motels and such but...
If I do attain the finances, I would very much
like to attend long term. (if they'll have me)
But things like food, medical, prescriptions, lodging are a concern.

J.

[NoDecafPlz]

Oh and just to add my two cents
to the arguement, at this point, much of the cause-and-effect relationship for recovery
might as well be labeled "magic."
We have a "good foundation" from which to chart,
but we have not gone far enough to have hindsight. Many people would love to gain some benefit, regardless of whether they are part of the formative research.

And I have a liberal arts education,
and was first chair baritone in my glee glub.

J.

[dcstve]

amen to that...
when the brain or spinal cord "reorganizes," we don't even know whether it is beneficial or not, or what "beneficial" even looks like. for all we know the "blips" on a brain scan might not mean anything good (or bad) is happening and recovery might be occurring in another region or not at all.

i wasn't in the glee club, but played frisbee football.

[Jesse's Mom]

Originally posted by dcstve:

amen to that...
when the brain or spinal cord "reorganizes," we don't even know whether it is beneficial or not, or what "beneficial" even looks like. for all we know the "blips" on a brain scan might not mean anything good (or bad) is happening and recovery might be occurring in another region or not at all.

i wasn't in the glee club, but played frisbee football.


I wasn't in the glee club, but played frisbee football. ?? Is this a clue Steve, or did I miss something?

[Clipper]

dcsteve,

I have never been to PW or any other such place, nor have I participated in research studies. I think that establishes me as an objective reader of this thread.

That said, I do find your comments to be critical of PW - as well as condescending and completely unnecessary. Anyone who shells out major bucks for extensive rehab or who participates in a study is going to do their homework and explore ALL available options. That includes weighing the pros and cons, evaluating the cost issue and deciding if the POSSIBILITY for positive results is worth the risk/effort/money. Right now, today, I am not in a position to think that PW could benefit me. Nor am I eager to seek out research studies. That is my choice, based on my assessment of things. This choice may change in the future.

Instead of signing up and posting the same CRITICAL diatribe in THREE threads, please provide information on the studies you mention. That way, everyone can benefit from reading about all alternatives, rather than the rants of someone who so clearly has an agenda.

[beachlover]

Hi Snowman -
In visiting the PW web site I noticed that you started a research project last fall with Wayne State (and I'm guessing the rehab arm of the DMC). Do you know when you'll present or publish the findings?

In reading Steve's comments, I was thinking about the research triangle. Research leads to publishing that leads to funding that leads to research that leads to funding....the life cycle of medical research. If you (Or WSU/DMC) publish, then perhaps MD/PhD reseachers (like Steve) might be more inclined to support your program.

I don't have a real personal interest in SCI or rehab. I visited your website and this forum since we're praying for a young man at our school who suffered a SCI.

In looking at the videos, it seems that your clients receive alot of personalized attention and for individuals with a C-level injury, many tasks have 2 or 4 trainers assisting. Your home based program certainly sounds like a possibility for those that can't relocate to San Diego.

While I work in healthcare and have a little understanding of the medical research world, I am a little confused why folks want to throw stones. As a casual observator I don't see your program making "cure" promises or carryng a big stick making people sign up to participate.

Happily, Steve's patients don't need his referral or endorsement, they can decide for themselves if PW is right for themselves.

I do want to say -- there are many of us who are praying for treatment alternatives (like PW) and cures, not just for the people we know personally but for all individuals with SCI.

Very best wishes in the future.

[chick]

If there is no research to help show the efficacy of programs, then the people with SCI (or any condition) seeking therapuetic help can not make informed decisions about which programs would best fit their needs. How can one weigh the cost/benefits when there is no data to support how effective a program is for particular groups of people/conditions. Obviously there are many people satisfied with PW and the benefits some have recieved. Hopefully, PW and other programs will actively conduct research to provide the evidence necessary to help validate program effectiveness.

There is some evidence showing significant improvements resulting from increased exercise regimins. Given the restraints imposed by insurance which has dramatically cut physical rehabilitation for many SCI persons, engaging in alternative exercise programs utilizing trained therpists should help many who would otherwise recieve little or no therapy. However, if one can afford to pay the cost of alternative programs, then insurance should not inhibit them from continuing their rehabilitation.

Research is necessary to ensure that exercise programs are not having a detrimental effect. Having sound research will not only help the persons seeking programs but research will help the programs themselves by giving them a broader knowledge base to help tailor methodologies to specific individual's needs. Evidence of functional gains would also help insurance reimburse the cost of such programs, thus enabling many more people the opportunity to benefit from them.

[This message was edited by chick on 11-25-03 at 09:48 PM.]

[CaswellT]

I spent 7 months at PW, i left just bout a year ago and made great improvements, and defiantly was worth the money. Trainers and clients were great and all striving for same goal. a university (Not sure which one, but i'm sure its on the PW website), there were 6 or so original patients observed/recorded/documented by the university n i figure still are being observed, n i believe they r startin with every new permanent client. so they should hv initial results fairly soon.

[Jesse's Mom]

This post pertains to the post that dcstve started yesterday. Something very strange happened and I cant figure it out. Right after I posted my response to his letter I received an email from someone, I wont mention the name RIGHT NOW, but it was signed Steve. All it said was "You messages were from Dr. John McDonald. Steve" . I emailed this person back. I said "I am confused. How can I have an argument with a Steve at CC, get an email from You, but signed by steve and you speak of a Dr. John McDonald. Could you explain". He sends me a letter back and says "I dont think I need to explain....LOL...just read the messages posted. PHD, a MD, and am fellowship trained in rehabilitation research. A little secret between me and you. I know McDonald's writing and nickname. Steve. I then wrote back and said" yes, you do need to explain. Who are you. You better explain this to me or else I am going to go to Snowman (to see if he also got these emails) and you wont have a secret anymore. " So this morning I get up and I have another email and in the subject line it says FINAL EFFORT. The email says "Please have the curiosity to contact Steve at his business e mail rather than home. Good luck.. " All of these emails came from the same person . There were several websites to go to listed in these emails, for instance spine@neuro.wustl.edu and McDonald@neuro.wustl.edu.
Part of one email (but not in his letter) said for more info correspond directly to Mcdon6663@aol.com. All addresses are related to WUS, from the spinal cord injury program. Can anyone answer what I am missing here?

[Snowman]

Jessesmom

I have not gotten any emails from this person.

I don't know if he is legit or not...in his profile it states he was born in 1970 making him 33. It seems difficult to me to have been an exercise physiologist, and then get an MD, AND a PHD by this age...4 years Bachelor's,? year(s) as an exercise physiologist, 4 years med school, 2 year residency, 2 year? PHD program, ? year(s) fellowship training rehab research.


If you want to, forward those emails to me and I'll take a look.

It seems to me that the emails are insinuating that Steve is Dr. McDonald? If true, why would he have posted a negative comment about WSU on this thread (http://carecure.org/forum/showthread.php?t=47609)?

http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif

Eric Harness,CSCS
Project Walk™ (http://www.projectwalk.org)

[michele b]

Snowman,
It is sad that programs like PW and Sci-Step are viewed in a negative manner by those like Steve.

We can be confident that those contemplating coming to Ohio or California will seek the opinion of current and past clients. It is their opinion that matters.

[Chris Chappell]

In a nutshell:

Research= study, study, study.

PW, Sci-Step, NI, Sit-tall-stand-tall, Center IMT, Wash U, Cleveland clinic, MP, CRPF Centers of Excellence = work, work, work.

Study(ing): (reading, writing, observing) is necessary but also passive.

Work (in this/my example): sit-ups, push-ups, gait training, etc. are also necessary and active/aggressive.

The "proof is in the pudding" (Tex, myself, etc.)so to say. Noone can argue that exercise is good (healthful) - regardless of ab-ability, or da-ability. Inactivity is bad (unhealthful).

Centers like those mentioned above offer an opportunity for those with a "different" ability to employ, enjoy, and benefit from a dedicated program designed to maximize one's physical, individual potential.

Research, as Chick noted, would be ideally combined and used for evaluation to gauge effectiveness, etc.

However, dcsteve, research for research sake is not what this forum, nor thread is about. Your caveat emptor approach is appreciated but behind the times concerning exercise induced recovery methods which have been going on (for sci) since roughly the 1940's.

Exactly for the reasons you've stated such as (to the effect of) "reporting back to the physicians a patient's medical progress.." shows me that you're really missing the point of these programs/methodology.

The bottom line to all of this is that exercise is good. And quite possibly, a guided program such as those offered, may lead to additional neurological recovery.

One thing that I do agree with, however, dcsteve is your review (lack of research available) of the Dardzinski(sp) method. This, to me, is a little over the top in terms of licensing, patent, etc. by Ted and his staff. I won't get into it now but I do take exception to the capitalistic approach PW is now taking regarding its methodology. It's left a very bad taste in my mouth.

Btw, all, I sincerely doubt that dcsteve is Dr. McDonald given that the St. Louis exercise induced recovery program is one of the most
effective and leading edge programs in the country.

Onward and Upward!

[Snowman]

I am now absolutely sure that Steve is not Dr. McDonald since the email he sent to Jessesmom has "Frank Ross" as the sender. So, unless Dr. McDonald's real name is Frank Ross.....we're safe.

http://sci.rutgers.edu/forum/images/smilies/smile.gif http://sci.rutgers.edu/forum/images/smilies/cool.gif http://sci.rutgers.edu/forum/images/smilies/smile.gif

Eric Harness,CSCS
Project Walk™ (http://www.projectwalk.org)

[Steven Edwards]

Can I be sent the emails, too? I would like to check something out...

-Steven

[Jesse's Mom]

Originally posted by Steven Edwards:

Can I be sent the emails, too? I would like to check something out...



-Steven

Let me know if Snowman doesnt forward to you.

[beachlover]

Snowman -
Do you know when Wayne State (or PW) be presenting your findings, either in print or at a conference?

Just curious.

[carlriccio]

chris ,can you tell me that asia A or asia B patients ,those that have absolutely no voluntary movement below their injury site can with intensive exercise , move and use otherwise paralyzed (completely) muscles.
my son carl (carlricciotrust.com ) is a c4-5 complete movement sci patient. he is 17 and has a work ethic second to no one. if he can get cured by exercise ,then we will stop his life as he knows it and go to the ends of the earth and start exerxcising 24 hoiurs a day if necessary.
so once as gain my son does not have any voluntary movement in his triceps,wrists,hands,fingers, and of course everything else below .have people in his situation gotten back ,triceps?,wrists?hands?fingers? or anything below strictly from exercise.
iam skeptical because when i speak to people that have had success on a certain group of muscles and get to the specific question did you have anything in that muscle before ,the answer after some digging always seems to come back yes ,very slight,not functional etc.
i need the answer to be no ,never moved my legs or fingers even the slightest and now i walk ,now i play the piano etc . if someone can give me this answer. i will have to move my self and my son to wherever this happens.
carl is planiing on graduating high school in june and going to college in september 2004.
if exercise is the answer these plans will have to be put on hold.
who can tell me that we should take such a step?
thank you peter j riccio

[GKTrader]

The final post of this thread was never answered four years ago. Are there any testimonials from anyone that attended project walk, sci-step, or motoworx that went into the program ASIA A or B and came out walking? If so how many months post injury did they enter the program and what level was their injury? I am T-6 Asia B, less than three months post.

[GKTrader]

Can anyone respond here? In my opinion, the silence is deafening. I woudl think that if people were complete and they went out to project walk and got walking again they would swear by the program. I am seriously considering going out there but I want to network with actual patients that benefitted from the regimen. I'm not going to make a decision based on their website, that's for sure. Snowman, can you provide me with a peer that I could contact?

[momo3]

People might not be responding because of the start date of the thread. Maybe start a new thread. I am going out to Portland (PW) in June to work on the home program. I am T8 "complete" 6 months post injury. I have a lot of spasms, burning, tingling, "numbness", etc. but no voluntary movement below the belly button. My PT did find some hip flexors, back muscles engaging when I tried to move them. I am stronger on my left than my right.

[divin'darren]

There are a lot of threads on this, you obviously searched for a PW thread since you brought this one back, so check out some more.

You can contact me if you'd like, I've been there 4x but I'm an incomplete quad. I think I can get you an email address of a complete para. I have to check.

[GKTrader]

Snowman, can you put me in touch with someone that had a mid-thorasic level injury, initially classified ASIA A three months after injury that you had walking within a couple years? PM me if you can. Thanks.

[freedomdan]

project walk -> worth it 5 months post???

[tmorris381]

by now you know that no injury is the same and no two people respond exactly alike. why not try these programs out and see what return you get rather than let other peoples experiences put a cap on your abilities...

[freedomdan]

will go no matter what
wondering if they actually helped completes, not just better trunk control,
i wonder if they ever just once gave a complete some voluntary function

[momo3]

That hasn't happened in my case BUT I was only there one week and did the home program. I have seen my records and saw that I had at least trace amounts of movements in every joint below level of injury ie. hips, knees and ankles. Still a great program to keep your body in shape. Just because it does not move on its own does not mean it shouldn't have exercise. Just my IMHO.

[Piper]

In some instances, completes have been reevaluated as incompletes and have gotten more return than just better trunk control. I agree, you can't put a cap on what might happen for you judging by someone else's experience. But the decision to try an 'alternative' approach to recovery (no matter what it is) is a personal one.
Whatever your decision, I hope the best for you.

[freedomdan]

thanks piper so its happen
complets reevaluated as incompletes

wonderful it has happened, it will happen again

[tmorris381]

good news and glad you found that out.

i know you're looking for more than just trunk control, but any functional movement at or below the hips all start there, you know what i'm saying?

improved trunk control is a necessity to walk again.