NoGo Trap

            CHEMICAL WAR AGAINST SCI or New pharma approach to repair broken SCI are on the horizon

How about chasing   ACROLEIN SCAVENGER, Aiming 14-3-3 – Target and setting up NoGo Trap.  Sounds like some new space war strategy. And they are actually part of the same troops intending to attack our mutual enemy.
          After the story about Acrolein Scavenger in form of drug Dimercaprol  and story about Fungus produced molecule Fusicoccin-A 14-3-3  in the beginning of this year, we can read these days about another pharmacology approach that might help people with Spinal Cord Injury.
          There is now NoGo Trap – pharmacology procedure that will allow broken nerves in damaged Spinal Cord to grow back together.
 NoGo Trap – neuro-restorative Nogo Receptor platform technology discovered by Stephen Strittmatter, M.D., Ph.D., at Yale University and founder and scientific advisor to ReNetX.
Human trial should be ready by the end of 2018. Read more here. or hereneurons-33

 

 

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My Future Therapy

Update October 2017

ABSTRACT: My plan is to dedicate six months of heavy workout that includes of 3-4 hours daily weight support walking physio-therapy based on programmed
neuro-muscular stim (Sigma Parastep);
To fortify my walking therapy, I will also use novel medicine:
4AP-3-MeOH – potassium channel blocker to enhance my neuro-signals.

You can support me here

 

Here is longer explanation below with more options.
Below I have posted “My Future therapy” article in April 2017, but this should be renamed as “My Science Fiction future therapy”.
Realistically, chances for me to put together some new elements and create proposed new therapy, without serious funding and connections, are bleak.
Seriously. .. I wish I can have a chance to test this as proposed Unique Therapy, but…
For now I am trying to create home program, to use equipment and resources that I already have, and to keep myself in decent form.
Next, more realistic step will be to figure out if I can access some rehab with established PARASTEP microcomputer controlled functional neuromuscular stimulation (FNS) system walking therapy with Gait support.
I have already tested briefly this therapy in Sci-Step, Mason Ohio (now closed) clinic and seems to be working fantastic for me. Now – I am in search for affordable clinic…
If is good…
If lottery hits me or some willing-to-invest-in-crazy-idea investor open wallet, I can purchase equipment PARASTEP and NxStep Biodex gait system and put together with space & therapist for 6-9 months run for approx. CDN $ 70-80,000.

 

My Future Self-Invented Therapy will be combined of:

1. Extensive Gait walking [1]

2.  4-AP-3-MeOH (new experimental medication)

3. Virtual Reality Program (adjusted for Incomplete SCI)

Let me explain in few words what I have learned after 14 years in wheelchair and after so many Yo-Yo physical rehab attempts, self-testing experimental medication and research. I have figured out that only way to make difference and preserve achieved progress is to stop waiting and go radical & invent my own therapy. [2]

PROGRESS IS POSSIBLE

Victims of Spinal cord injuries can recover to certain extent with a long and custom tailored physiotherapy.

Unfortunately, this fact is not everywhere accepted or is not welcomed with healthcare systems as too long = too expensive approach.

Patient’s are rather sold all kinds of wheelchairs & assistive equipment, told lies of possible outcome as “you’d never walk again” or wishes as “medicine science will come up with cure in 5 years”.

It’s easier, less expensive & stressful to teach such a patient to accept life in wheelchair than proceed with 3-4-5 hours 1:1 physio therapies daily with “uncertain outcome”. This approach looks better on statistic charts too for any rehab or hospital. However, this is not the best choice for injured, paralyzed patients, unfortunately. [3]

IN-COMPLETE

In more than 80% cases, spinal cord injuries are caused with contusion or bruise on one part of spinal cord where larger portion of spinal cord is preserved. Such a patients with Incomplete SCI have more chance to recover – due to neuroplasticity [4] – than victims with totally cut off cord .

It is proven that healthy part of brain or spinal cord can take over function from damaged part. But, unfortunately, this will not going to happen by itself. Only way neuroplasticity recovery happens is after countless move or try to move repetitions. This process is painfully slow and as soon as certain exercise procedure / pattern is stopped, patient loosing whatever progress was made exponentially fast.

Luckily, there are some new tricks in bag that can help this process shorten with more chance for recovery.

GAIT AND ROBOTIC WALK

First, there are different equipment for suspended weight / gait walk training and robotic suites with sensory to detect patient ability to move and to assist motion  close to real standing and walking pattern.

VIRTUAL REALITY TRICK

There are also recent findings that “tricking” brain with Virtual reality

can accelerate brain and spinal cord neuroplasticity process.

Group of scientist’s from Brazil combined repetitive walking technique with virtual reality & brain interface achieve incredible results with Complete spinal cord injured patients[5].

Also, more and more researches and companies working toward a goal to accommodate Virtual Reality program for certain rehab procedures[6].

EXPERIMENTAL MEDICATION – 4-AP-3-MeOH

Chances are that Incomplete injuries will recover faster, with similar program.

Incomplete injuries must not have Brain interface (cap with electrodes) at all.

To help existing partially damaged or impaired nerves better conduct signals from the brain, potassium channel blockers are used for decades.

The latest, 4-AP-3-MeOH blocker, experimental medication makes big difference in exercise outcome with less side effects than 4-AP or (F)Ampyra [7].

To summarize above, I am planning to test this combined therapy ASAP!!

Gait walking + 4-AP-3-MeOH + Virtual Reality Program 

If I prove this with me going back on my feet again after 14 years in wheelchair,

I can help to change life to many Incomplete Spinal Cord Injured patients as they

will have all details of this program / therapy available for FREE !

Right now, I am in search to secure stable supply of experimental medication 4-AP-3-MeOH.

Second thing – I will try to obtain VR program that will help me in this process.

I am also working hard to be able to allocate funds for this self-help experiment / therapy.

Z.K.

[1] I am C-6 Incomplete SCI and my legs can not hold me. I need gait -suspension weight support to be able to try to make steps. In several years, as a member of University of McMaster special gym for Spinal Cord Injury rehab I was walking above treadmill with suspended weight and stepping help by couple of student volunteers and my steps had improved considerably, even I was walking only twice per week by 40 minutes. However, I stay without funding once when they increased price 10 times in September 2016 and I have stop with walking therapy. In some previous rehab attempts and according to  some other

walking therapy achievements [a] I know that at least 6 months programmed walking therapy with at least 20 hours walking per week with  4-AP-3-MeOH potassium channel blocker and Virtual reality program help will help me to walk again!!

[2]  Yo-Yo rehab effect is known to patients and physio-therapists and could be overcome only with some new, radical approach.

[3] From my personal experience with Canadian Health Care system;

[4] The human brain and spinal cord has the amazing ability to reorganize itself by forming new connections between neurons – this is called NeuroPlasticity.

[5] See https://www.nature.com/articles/srep30383

[6] MindMaze, company with successful VR program for rehab of stroke victims is moving closer, according to them, toward VR rehab program for Spinal cord injuries. Also some other sources of Virtual Reality in rehab found here: [a] [b] [c]

[7] Unfortunately, this new medication is tested on animals only and group of self-testing volunteers (including me) and it’s not always easy to obtain. [4a] [4b] [4c] [4d] [4e]

Spring 2017 SCI News

This is the Digest of newest discoveries and movement in Spinal Cord Injury Therapy and Recovery field.
green-light-walk
Man with SCI (complete para) walks with no robotic suite – only with brain / leg interface. also thanks to Bluetooth…
https://www.engadget.com/2015/09/24/paraplegic-walks-with-mind-control/
University of Edmonton team figure out huge OXYGEN role in recovery
http://edmontonjournal.com/news/local-news/university-of-alberta-discovery-offers-promise-of-new-therapies-for-spinal-cord-injuries and also this link
Dr. Shi and his team discover that old drug Dimercaprol can disolve poison Acrolein formed in our nerves after SCI. Only on animals for now…
https://www.purdue.edu/newsroom/releases/2017/Q1/an-old-drug-with-new-potential-wwii-chemical-weapon-antidote-shows-early-promise-as-treatment-for-spinal-cord-injuries.html   
red-maple-leaf
Go Canada Go!!! Canadian team with Jan-Eric Ahlfors with his autologus stem cell project and Krembil Neuroscience Center with Dr. Fehlings and other masters of Neuroscience
coming up together with Fortuna Fix promise to move things faster toward SCI CURE!

My Future Therapy

Update October 2017

ABSTRACT: My plan is to dedicate six months of heavy workout that includes of 3-4 hours daily weight support walking physio-therapy based on programmed
neuro-muscular stim (Sigma Parastep);
To fortify my walking therapy, I will also use novel medicine:
4AP-3-MeOH – potassium channel blocker to enhance my neuro-signals.

Below I have posted “My Future therapy” article in April 2017, but this should be renamed as “My Science Fiction future therapy”.
Realistically, chances for me to put together some new elements and create proposed new therapy, without serious funding and connections, are bleak.
Seriously. .. I wish I can have a chance to test this as proposed Unique Therapy, but…
For now I am trying to create home program, to use equipment and resources that I already have, and to keep myself in decent form.
Next, more realistic step will be to figure out if I can access some rehab with established PARASTEP microcomputer controlled functional neuromuscular stimulation (FNS) system walking therapy with Gait support.
I have already tested briefly this therapy in Sci-Step, Mason Ohio (now closed) clinic and seems to be working fantastic for me. Now – I am in search for affordable clinic…
If is good…
If lottery hits me or some willing-to-invest-in-crazy-idea investor open wallet, I can purchase equipment PARASTEP and NxStep Biodex gait system and put together with space & therapist for 6-9 months run for approx. CDN $ 70-80,000.
I wish…
——————————————————————————-
Original post from April 2017
My Future Therapy (or My Science Fiction future therapy) should be combined of:
1. Extensive Gait walking [1]
2.  4-AP-3-MeOH (new experimental medication)
3. Virtual Reality Program (adjusted for Incomplete SCI)
Let me explain in few words what I have learned after 14 years in wheelchair and after so many Yo-Yo physical rehab attempts, self-testing experimental medication and research. I have figured out that only way to make difference and preserve achieved progress is to stop waiting and go radical & invent my own therapy. [2]
PROGRESS IS POSSIBLE
Victims of Spinal cord injuries can recover to certain extent with a long and custom tailored physiotherapy.
Unfortunately, this fact is not everywhere accepted or is not welcomed with healthcare systems as too long = too expensive approach.
Patient’s are rather sold all kinds of wheelchairs & assistive equipment, told lies of possible outcome as “you’d never walk again” or wishes as “medicine science will come up with cure in 5 years”.
It’s easier, less expensive & stressful to teach such a patient to accept life in wheelchair than proceed with 3-4-5 hours 1:1 physio therapies daily with “uncertain outcome”. This approach looks better on statistic charts too for any rehab or hospital. However, this is not the best choice for injured, paralyzed patients, unfortunately. [3]
IN-COMPLETE
In more than 80% cases, spinal cord injuries are caused with contusion or bruise on one part of spinal cord where larger portion of spinal cord is preserved. Such a patients with Incomplete SCI have more chance to recover – due to neuroplasticity [4] – than victims with totally cut off cord .
It is proven that healthy part of brain or spinal cord can take over function from damaged part. But, unfortunately, this will not going to happen by itself. Only way neuroplasticity recovery happens is after countless move or try to move repetitions. This process is painfully slow and as soon as certain exercise procedure / pattern is stopped, patient loosing whatever progress was made exponentially fast.
Luckily, there are some new tricks in bag that can help this process shorten with more chance for recovery.
GAIT AND ROBOTIC WALK
First, there are different equipment for suspended weight / gait walk training and robotic suites with sensory to detect patient ability to move and to assist motion  close to real standing and walking pattern.
VIRTUAL REALITY TRICK
There are also recent findings that “tricking” brain with Virtual reality
can accelerate brain and spinal cord neuroplasticity process.
Group of scientist’s from Brazil combined repetitive walking technique with virtual reality & brain interface achieve incredible results with Complete spinal cord injured patients[5].
Also, more and more researches and companies working toward a goal to accommodate Virtual Reality program for certain rehab procedures[6].
EXPERIMENTAL MEDICATION – 4-AP-3-MeOH
Chances are that Incomplete injuries will recover faster, with similar program.
Incomplete injuries must not have Brain interface (cap with electrodes) at all.
To help existing partially damaged or impaired nerves better conduct signals from the brain, potassium channel blockers are used for decades.
The latest, 4-AP-3-MeOH blocker, experimental medication makes big difference in exercise outcome with less side effects than 4-AP or (F)Ampyra [7].
To summarize above, I am planning to test this combined therapy ASAP!!
Gait walking + 4-AP-3-MeOH + Virtual Reality Program 
If I prove this with me going back on my feet again after 14 years in wheelchair,
I can help to change life to many Incomplete Spinal Cord Injured patients as they
will have all details of this program / therapy available for FREE !
Right now, I am in search to secure stable supply of experimental medication 4-AP-3-MeOH.
Second thing – I will try to obtain VR program that will help me in this process.
I am also working hard to be able to allocate funds for this self-help experiment / therapy.
Z.K.
[1] I am C-6 Incomplete SCI and my legs can not hold me. I need gait -suspension weight support to be able to try to make steps. In several years, as a member of University of McMaster special gym for Spinal Cord Injury rehab I was walking above treadmill with suspended weight and stepping help by couple of student volunteers and my steps had improved considerably, even I was walking only twice per week by 40 minutes. However, I stay without funding once when they increased price 10 times in September 2016 and I have stop with walking therapy. In some previous rehab attempts and according to  some other
walking therapy achievements [a] I know that at least 6 months programmed walking therapy with at least 20 hours walking per week with  4-AP-3-MeOH potassium channel blocker and Virtual reality program help will help me to walk again!! 
[2]  Yo-Yo rehab effect is known to patients and physio-therapists and could be overcome only with some new, radical approach.
[3] From my personal experience with Canadian Health Care system;
[4] The human brain and spinal cord has the amazing ability to reorganize itself by forming new connections between neurons – this is called NeuroPlasticity.
[5] See https://www.nature.com/articles/srep30383
[6] MindMaze, company with successful VR program for rehab of stroke victims is moving closer, according to them, toward VR rehab program for Spinal cord injuries. Also some other sources of Virtual Reality in rehab found here: [a] [b] [c]
[7] Unfortunately, this new medication is tested on animals only and group of self-testing volunteers (including me) and it’s not always easy to obtain. [4a] [4b] [4c] [4d] [4e]

Free, Massive VR exercise trial needed

Virtual or Augmented Reality will contribute tremendously in rehab and recovery of SCI. With Incomplete injuries this new tool can make day / night difference.

Referring to Sao Paolo, Brazil trial, it is obvious that virtual Reality component is adding something substantial and important for brain and cord to jump faster with re-wiring in effort to send signals to patient limbs.paraplegic-mobility-brain-machine-interface-12
For complete injured patients scientists had to use cap with special sensors to pick-up signals directly from the brain – as signals can not by-pass injured site.(Note 1 below);
Sao Paolo trial shows amazing results. All 12 complete injured SCI patients in this trial improved a lot and the most of them start to voluntary move their legs.

Incomplete injuries should be even easier to train using VR component with no need to use a cap to pick-up signals.
In lot of cases, Incomplete injured patient have signals by-passing injured site, but they are just too weak to contract muscles and move their limbs.
Sensors (wi-fi) can be attached on the skin should be able to pick up these nerve signals and to supply program that would run VR module with augmented reality showing legs movement.
icaros-500x333
Depend on level of mobility of incomplete injured person, different modes of support would be applied. In some cases just parallel bars will be enough. Gait support walking (ZeroG or similar) and in some cases Lokomat or even robotic suite (Hal or KeeoGo – suites able to pick up and amplify weak signals) should be adjusted to work in accordance with program and VR module.

This VR component combined with gait supported walking or robotic suite might be the holy grail for future physical rehabilitation.
Even simplified VR program without use of sensors should help incomplete SCI in rehab. Nobody knows without trial.vr-glass
That’s why we need a program with Virtual Reality set of sitting / standing / walking / hand exercises available on google cardboard & smart phone for free massive VR trial. (Note 2)   We need it Yesterday!!!
Z. Komadina

Notes:
(1)
In Brazil complete injuries trial scientist put complex head cap interface to pick-up signals and transfer them to electrodes to lower body. However, this would never be enough to control standing and walking as Spinal Cord Injured person got no balance, which is controlled by corrective actions with more than 100 muscles in our body.
To help patient to walk they had to use Gait supported walking machines as “Locomat”.
After so many sessions with use of Locomat & Head cap and Virtual Reality program that was additional component to help brain to harmonize walking process and make it look more natural and inspirational, this Virtual Reality component shows up as extremely helpful as somehow (they don’t know yet why) helped patient brain to start to make physical nerve connections, and despite seriousness of injury (all 12 participants listed as complete injuries), after removal of head-cap and electrodes interface patients start to move their legs showing neurological connections were established! This amazing twist is showing regenerative ability of human body even beyond plasticity.

(2)
My idea is that Incomplete SCI, where some neurological connections are already existing, can be Fortified WITHOUT cap and electrode interface just with Virtual Reality program and constant series of supported walking exercises. Instead of waiting for any official trial, testing of this idea can be done by any volunteers combining their walking exercises and Virtual Reality program that might be crafted (by my opinion) much easier than program done for complete injuries.
We just need to mobilize people involved in creation of similar Virtual Reality programs for SCI or similar disability exercises, to make something that can be downloaded and used by us.

References:
(Sao Paolo Trial) (VR future) (Affordable VR coming) (VR Therapy already) (VRT 2)
(VR help strokers fo move again) (VR strokers) (Scientifically explained) (AR scientific)
(VR Gaming – arm aralysis therapy)

Recovery with Virtual Reality

sao-paolo

Virtual Reality Gait supported walk training’s after 12 months caused all 8 Chronic Paraplegics in Brazil’s Sao Paolo institute trial to recover some sensory or motor functions!

The whole story you can find here:
http://www.nature.com/articles/srep30383

see more here
http://www.huffingtonpost.com/entry/robotic-suit-paralyzed-breakthrough_us_57ac6892e4b06e52746f54f6?

http://sci.rutgers.edu/forum/showthread.php?255266-Walk-Again-Project&p=1814090&viewfull=1#post1814090

How Much is One Step ?!

Story about MacWheelers Gym, last affordable place for gait supported walking exercises in Southern Ontario for many Spinal Cord Injured people or MS impaired victims is shutting down its door of opportunity with up to 10 times higher fee’s than in previous years. MacWheelers Gym became overnight non-affordable / non-accessible place.


About MacWheelers Gym
MacWheelers-Logo
For people who don’t know much about MacWheelers Gym – If we start from beginning, this place was first created as research “lab” for Kinesiology department and when participants asked to stay and exercise on regular basis, McMaster University had decided to make a Gym for people suffering from SCI and MS as a place to exercise and pay just regular gym membership fee as any able body people in regular gym.
This unique idea brought volunteers, mostly Kinesiology student’s who are helping us and learn through this process preparing at that way for their future profession, made this Gym successfully functioning for the last 15 years helping so many people.
This gym was also built with help of lot of people, companies, organizations, number of fundraising and grants for purchases all specialized equipment and some of the most advanced equipment for gait support training.
For daily operations MacWheelers is managed with help of few staff members, usually more experience students, that are paid minimum wage for their effort.
This place parallel function as Kinesiology department research facility so University from beginning granted it’s space, and also with paid equipment (!),
volunteer’s, minimum staff wages, and 96 active members (x $50 monthly membership fee~ $ 60,000 yearly) MacWheelers Gym should be able to operate as self
sustain facility even after paying staff salaries, maintenance etc.
     However, with all of promising points to run this joint successfully, apparently after years of financial mismanagement, with some added administrative fee’s
 and salaries of people (possibly not needed) to run this place, the gym slipped in deep hole beyond accounting repair with debt of approximately $ 250,000 of debt
(or more as they said) and according to management of Pace program which is organizational and administrative “motherboard ship” for MacWheelers Gym,
the way out of trouble this management see only in increased membership fee’s that would charge 10x more for progressive walking exercises.
As far as I know so far, from 16 patrons of this Gym who were using gait training, half of them already dropped from the gym unable to pay draconian and non-accessible fee’s of up to $ 700 monthly and other half reduced their walking exercises to minimum, already killing envisioned contribution for Gym financial recovery from that source.
In Pace management vision for financial recovery, they have never proposed relaxing administrative ballast or to increase membership base for the Gym and number
of operational hours [Gym is open only 15 hours per week(!)] to allow other people with mobility impairments to come and use benefits of this place.


My Story

I am member of MacWheelers Gym @ McMaster University in Hamilton Ontario for more than 5 years. My previous post about “MacWheelers Dream Gym” jinxed the whole sugar-coated story about this gzm. With new fees, instead of payment of $ 75.00 for previous monthly membership, now, for exactly the same thing  -2 walks per week (x 40 min) on gait supported treadmill I should cash $ 600 per month!!!
treadmill-walk
With a help of MacWheelers staff, I have carefully tailored my exercise program and after last couple of years of hard work and continuous exercises that includes 2 walk per week on treadmill,
I have finally start to show improvements with my health and mobility. As a matter a fact, last 12 months I was witness of huge success for me after previous 12 years since my injury,  12 long years with almost no any change.
For example, I have dropped down weight support on treadmill from 75 kgs to 10 kgs in last 12 months and also I have improved my stability, core, my transfers, etc. Sensitivity, bladder and bowel control are also two-fold increased in this period. (Btw – My spinal cord injury is C6 Incomplete Asia B/C)

I am pretty sure I was able to achieve all of this only by increasing frequency and intensity of my walking sessions from once to twice weekly and by increasing number of minutes per session from 25 to 40 in the last year.
My idea is to increase level of my workout to 3 walks per week to see if this improvement trend will continue, start slow independent slow walk (I can move my lags from my hips) and eventually start to exercise with ZeroG.

After new fee’s were proposed, I have contacted Pace program Management with
question what to do to preserve my exercise level.
Their answer was basically – to pay.
Oh, btw, they congratulate me on my success!!

They are directing me to find sponsor or try to cover through insurance.
In other words, I should be wheeling around begging for sponsorship.

Insurance company needs confirmation and prescription from doctor that
exercises will help me to recover.
Doctor’s shrugs their shoulders for they believe in an age old health care policy that condemns chronic spinal cord injuries to a crippled life that can not  possibly recover.
So many researcher’s (even from McMaster University) and some live examples tells different story for incomplete injuries.
From my experience, I was witnessing fantastic progress of few people who worked really hard.  They have live examples from MacWheelers Gym of people walking out of the wheelchair after working very hard and with help of special equipment and volunteers.
Dave-MacWheelersAn example of this can be seen in 80 years old member Mr. Dave Cook (former MP) who dismiss concerns of his Doctor specialist that tried to discourage and frighten him with “what if you fall and break a hip”, and regardless of that he kept working hard till he start to get up and walk with
less and less ZeroG machine help !
This Gym, for the most of us, is not only exercise joint but social, health, equipment etc lifeline portal and with new “no-wealth-no-exercise”
policy is making it non-affordable and non-accessible for the most of us and will kill great idea of equality for handicap people.



tri-musketiers-mac-wheelers
Few members were trying to move things by writing public petition and meeting with management but no any changes regarding gait exercise high fee’s are considered.

* * *

And finally, the whole story about this unique and inspirational place that is settled in thick Hamilton’s fog and painted with colors from spectrum of mismanagement, University bail-outs, schizophrenic nature of little-bit-gym-little-bit-research-program, hundreds of thousands of dollars of grants to joint accounts, fund-raising efforts from the last century (yes, bring empty beer bottles…), scares from insurance companies “what if something happen and somebody sue you”,  is not really getting any more clear with new “commercial” vision at all.

To preserve classical capitalistic supply & demand scheme even here, management will rather see this advanced equipment collect dust than allow members to use it for regular membership fee – as it was the case for last 15 years.
People who are progressing very slowly due to nature of their injury or health state will be stranded with no access to walking gait supported machines that can help them.
Parody of this situation is when staff members come to position to explain to young students about special equipment on the floor, they would need to jump on Zero-G, Locomat or Gait trainers by themselves and people in wheelchair will be only able to watch.

Z.K.

p.s.

WALK is possible

How others see standing and continuous walking exercise can help mobility impaired / spinal cord injured people.
In China’s center Kunming for decades they are practicing walking program that last at least 6 months, with 6 hours a day, 6 days a week and they have fantastic results when many people walking out of wheelchair and be independent.

Kunming walking video

In Germany they are using gait training combining with new technology – robotic legs at least 5 hours a day, 5 days a week also for at least 6 months to create some totally “unexpected” results – unexpected for this health care system that is actually promoting big dependability business.

Neurologic-Controlled Exoskeletal Neuro-Rehibilitation by Thomas Schildhauer, MD