Re: New to group - Project Walk info

[Guest guest]

Hi,

All I can say is Project Walk is worth every penny, but you have to

be very dedicated to the program for it to work. I know it is

expensive but think about what it will do for you down the road. Also

some insurance plans now are paying apportion of the cost, I have good

insurance and under my PPO plan they are reimbursing me 80% of the

cost. I think the costs are on their webpage, but I know it is 100$ an

hour.

They themselves (ProjectWalk) don't take you off your medication,

your doctor helps you do that. How PW is involved in this is through

the exercises. With stimulating the nervous system thru exercise, your

body is able to re-connect to the brain. You learn how to control the

spasms and for me my nerve pain went away with this form of

stimulation. But you have to remember everyone's body is different.

The trainers at PW are amazing! They work so hard with each client

and keep you motivated. Because they believe in the program and in

you, you believe that you are capable of reaching your goals. They

can't guaranty that everyone will walk again but with their program

your life will improve. It is a lot of work but for me I will do

anything to walk.

I was told by my old PT to except the wheelchair, to give up on

walking. Now after being at PW since July, I will be going back to

school in January and walking to class with my walker. I now can walk

over 1/4 of a mile without stopping. Also when I move back into my

apartment I wont be needing the help of a caregiver everyday. I now

can get myself out of bed in the morning and walk to the bathroom

without any help. That is a big improvement for me and will save me

money every month.

Being able to have this freedom again, not having to depend on so

many people is worth every penny. Plus I have an all new positive

outlook on my life.

If you have any more questions on PW, please ask.

>

> ,

>

>

>

> It is good to hear your story. I have had a total of three back

surgeries.

> The first was for TC and diastematomyelia. The second was for

retethering

> from the first. The third was 6 months after the second for

> hydrosyringomyelia that developed after the second surgery. About 2

months

> after the second surgery, I was still in PT for strengthening, and

started

> losing function very rapidly in both legs. I went from walking

normally to

> using a cane, to forearm crutches to the addition of AFOs. That is

when I

> decided to have surgery three to try and stop the progressive losses.

> Although my MD said the surgery was more risky than my previous two,

he felt

> that he would be able to stop the loss and hopefully return some of

the lost

> function. When I woke up I was paralyzed from T12. According to the

post-op

> MRI, there is no reason why I'm paralyzed. There are several

theories - the

> cumulative damage of the 3 surgeries that damaged microscopic blood

vessels,

> microscopic nerves or combo of both. I also developed arachnoiditis

after my

> second surgery and that could be a possible cause as well. Who

knows. But in

> all honesty, paralysis was an easier life than right before my third

> surgery. I was using AFOs and forearm crutches. I was so unsteady that I

> really couldn't do anything at all. I couldn't' even carry a drink

from the

> kitchen to the living room. I couldn't cook or even make a sandwich

because

> I needed both my arms to hold myself up. Using a chair was the best

thing

> that ever happened as far as being functional. I also had reached

the point

> where I could no longer drive. After my paralysis, I was introduced

to hand

> controls. Although IP and OP rehab didn't return any function, I did

regain

> my independence.

>

>

>

> I have read about Project Walk and thought about going - at least

for their

> 1 week IP to create a home plan. But I just haven't committed to

trying it.

> I keep hoping to find something local. Which my friend said there is a

> similar thing locally (south of ATL) that she visited when she met a

guy who

> was going. Same situation financially - no insurance covers it. I really

> like the idea of how they get you off your meds. You were only taking

> Baclofen and neurontin. I'm taking Cymbalta, Baclofen and MS. I'm

wondering

> how they go about getting you off the narcotics. I would like to

hear more

> about your experience there and also about how much it costs.

>

>

>

> Thanks,

>

>

>

> Jenn

>

>

>

> From: tetheredspinalcord

> [mailto:tetheredspinalcord ] On Behalf Of rutherford.kris

> Sent: Sunday, December 07, 2008 3:05 PM

> To: tetheredspinalcord

> Subject: New to group

>

>

>

> Hi my name is , I'm 25 and my cord is tethered from C3 thru

> C7. In 1995 the doctors found a tumor rapped around my cord from

> C3-C7. They removed the tumor, causing a lot of damage to my cord and

> waking up with a small chance of ever walking again. But with

> determination I was walking 2 months later. I went on with life

> thinking that I was done with this, but I was wrong. Slowly my cord

> started to attach to the scare tissue and my walking got a little

> difficult. I stayed very active, keeping my muscles strong while I

> figured out what was going on and what to do. In 2002 a doctor in La

> Jolla,California claimed he was extremely qualified to untether my

> cord. When the surgeon got to my cord he wasn't expecting it to be

> that bad, but went on with the surgery. He untethered C7-C5, then

> stopped because he lost all nerve signals and thought he paralyzed me

> from the neck down. He closed me up and told my parents to be prepared

> for a new way of life. When I woke up a miracle happened, I sat up in

> bed and was able to move my legs and arms no problem. I was told at

> that point that my cord is severely tethered and that surgery to

> untether it is no longer an option. Since I was still walking I

> excepted it, when on with life with just a little bit of paralysis on

> my left side and slight spasticity in the left leg. It never accord to

> me that my life would change dramatically.

> To skip ahead to today, I have had to have two more surgery's. A

> syrnix developed and the doctors at the Mayo Clinic in Minnesota in

> 2006, popped a hole at C5 to drain it. I walked into the surgery with

> a little difficulty and woke up unable to walk without the help of

> crutches and on Baclofen and Neurontin. Then after months of continues

> therapy and believing that I would be back to myself soon the doctors

> saw the syrnix filled back up, so in May of 2007 I had a shunt put in

> to continuously drain it. After months of hard work my therapist and

> doctors told me that because my cord is so severely tethered and

> damaged, that even though I can walk short distances with my walker

> that its time to move on and except life in a wheelchair.

> Not wanting to give in I kept on fighting to walk. I have found a

> new therapy that has worked. I'm almost off the drugs and walking with

> my walker I can now walk 1/4 mile without stopping. This place is

> Project Walk and its for people with spinal cord injuries only and for

> any level of damage. They believe that no matter what there is always

> a chance as long as you believe. There website is projectwalk.org,

> they are a non-profit organization and sadly no insurance pays for it.

> But it is worth ever dollar. I have been very lucky that my parents

> are able to give me the opportunity to take off last semester of

> school and go to a Project Walk full time. Now after 5 months of

> intense work I will be going back to school in January walking to

> class with my walker and continuing the program in San Francisco on my

> own.

> I know that with my cord being so tethered I have a difficult road

> ahead of me and my life will never be normal again. That I think is

> the hardest thing to except, but for me right now I keep fighting.

> Hoping that one day one doctor will be able to untether my cord and

> fix all that's damaged.

>

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