This my own observation and it’s not based on any medical & scientific
basis, methods or guidelines. I would ask anyone to take caution and consult
doctor before trying to repeat any of my ideas.
Conclusion: Potassium channel blocker – 4-AP-3-MeOH – New signal enhancer medication – will increase ability of damaged or less functional nerves to conduct signals and can help with exercise, in functional recovery program and during the rehab for Incomplete Spinal Cord Injuries.
With medication 4-AP-3-MeOH (currently 2 x 0.5 mg daily) I am taking for the last 4 weeks,
I am actually improving my posture and my ability to walk in higher platform
walker with knee braces (time and distance). Also, this medication is cause of increased
time and strength of pushing and frequency of good steps and time
of walking on treadmill with.suspended weight.
I have no side-effects so far and I am trying to keep “monitoring” and I will post any changes here.
Dosage is crucial. I got my capsules as 0.5 mg (as this compound is
10x stronger than Ampyra) and I have started by one daily, increasing
to 2, 3 and 4 daily slowly and decreasing slowly back to 2 daily within 2 weeks period.
I didn’t notice any side effects except slightly buzzing in my head when I had 4 x 0.5 mg**
(**which is, anyway hard to confirm with my chronic tinnitus 🙂 .
During this period and all time taking 4-AP-3-MeOH I did not take an alcohol or any other drug except aspirin.
I have very significant firmness in my legs, in my core, my non working fingers flickering.
My spasms didn’t increased with 4-AP-3-MeOH as with Ampyra in May this year,
rather there is less spasms, but when spasms happens they are stronger.
Somehow, my overall energy increased. Ability to voluntary and functionally move limbs just slightly increased.
Now I am planing to stop taking this cat – “MeeeOH” as I call it, for
a week or 2 to cleanse little bit, get some wine and see how this period without drug
will reflect on me and I am planning to start to take another round after that and I
will try to increase my exercise level along with dosage, to maybe 5 x 0.5 mg in time of heavy workouts. I am pretty sure that gradually increasing dosage in time of heavy exercise program time and than gradually decreasing dosage for less activity period is safe to do.
According to all research and data comparison, only benefits, old incomplete SCI
patients would get from long (6 months at least) and extremely hard walking exercise program.
If accompanies this exercise program with medication that increase signal strength (as 4-AP-3-MeOH) and possibly even use a system as Parastep (Functional Electric Stimulation & suspended weight walk), chances for good outcome would be much higher.
This compound drug is available from several places and I got 100
capsules for US $ 100 from UK compound pharmacy mod4all.com .
Shelf life is apparently much longer (18-24 months) than 4AP.
IN DEPTH
Since my SCI Injury (C-6 Incomplete) 12 years ago in waves of Virginia
Beach, I am trying to put together extremely complex and by medicine science
impossible-to-solve puzzle with picture of myself walking again.
After being ditched by Canadian Health care system that would rather promote dependability and assists business of wheelchair & various equipment & supplies, health care system that would never prescribe more than 12 physio therapies through 1 year (1 per month) for “chronic” spinal cord injuries, I have found myself paying for my own physio-therapies overseas, in my native Bosnia & Herzegovina in Rehab center in Fojnica, where I had recovered within 3 months to be able to walk in parallel bars with knee braces only.
Unfortunately I was able to travel to that rehab only twice (by 3 months) within 2 years
after my injury. With every return to Canada and after longer periods
without quality & quantity exercises, I lost all achieved improvements.
I knew that any improvement with my condition will be very hard to
achieve but I had no Idea will be so easy to lose it.
Only way to get lasting effect will be to exercise long & hard enough to put your mind and body over the threshold that will make yourself (body) going into mode of self recovery.
Only some very small percent of people figure out how to do it and did it.
As every incomplete injury is different there is no template, manual how to do it.
Each and every one of us, prisoners of our own broken body need to
find our own way, and everyone’s recovery and exercise program should
be custom and different.
However, some things works for All Incomplete Spinal Cord Injuries!
Program based on controlled and focused exercises, specially standing and walking (with
necessary help of others or help of needed devices) as often as possible over some longer period of time (at least 6 months) would bring certain improvement to any incomplete SCI person!
Some people recover more, some less – depend of several factors.
SCIENCE BEHIND
With incomplete SCI you can often find that only one smaller part of
the spinal cord has been damaged, contused, bruised with only some
nerves physically cut and the most of nerves intact.
Due to immediate “short circuit” reaction within spinal cord in moment or immediately after the
injury patient will go into “spinal shock” state, where the most neuro-signals below injury level are cut off. Even their intact nerves stop conducting proper signals.
In some cases person get lucky and after some time spinal shock effect
diminishes over the time and some of the functions get returned.
What is real mechanism of spinal shock and how its working is still great mystery.
Now, some of non-cut nerves that refuse to come back into conduction
signal mode are actually overstretched or contused / compressed
and their axons (center part of nerve) are intact but their own
insulation myelin sheet are jeopardized, so signal transfer has been interrupted.
That interruption could cause very weak, sporadic signal that for
effect has limited or weak ability of certain muscles to contract /
move or they can cause sporadic or more constant spasm’s.
Thanks to potassium channel blockers that acting as artificial nerve
insulators (Pyridine’s group (4-AP) ),
patient can get extra help in effort to re-establish neurological pathways.
Problem with potassium channel blockers is they can cause side effects.
Some side effects can be serious as epileptic seizures and due to
highly unique “configuration” of every injury, it is almost impossible
to establish universal dosage. That’s why each patient who is taking potassium
channel blockers need to go through careful ramping process to find
out what dosage will work for him / her.
There are several pyridine based blockers – first, the oldest one is
generic 4-AP drug know for few decades, made by compound pharmacies and
used by lot of people with more or less success.
There is also slow release version of the same drug approved about 5
years ago known as Ampyra in USA (Fampyra – Canadian version).
This drug is very expensive ($ 600 – $ 900 monthly dose) for non
insured people and it is approved for MS patients but never officially
approved for Spinal Cord injured patients exactly from the same reason of inability to
establish universal dosage.
Third generation of this drug is 4-AP-3-MeOH, 10 X stronger and with
less side effects than predecessors.
This drug came from Lab of Dr. Shi (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3019253/ )
and it was tested on animals only – never being tested on humans.
BEFORE MY EXPERIENCE WITH 4-AP-3-MeOH AND SOME OTHER EXPLANATIONS
Yes, I feel as a Lab Rat…testing alone something that was tested on animals only.
Well, I have already tried, by my Spinal Cord doctor prescribed, similar medcation
“Ampyra” in May of this year when I visit again Rehab center in Bosnia
and after few weeks I didn’t notice almost any serious side effects taking
2 x 10 mg recommended dose of this medication..
I was there in SCI Rehab Clinic for 45 days and once I had
finished my training session in rehab center in Bosnia I have stop taking
Ampyra. With Ampyra, major differences caused with this medication were
overall 200% greater stiffness of my legs and some stronger spasm’s.
In that Rehab time I have focused more on core and lower back
exercises and not on walking.
Let me explain something – about use of “walking” term here:
There are 2 type of “walking” I perform – walking with knee braces in
tall platform walker with belt behind me and there is also
suspended weight type of walking on treadmill with help of my feet positioning.
I have platform walker in my home and usually walk every morning 30
min or less after stretching exercises.
This walk I call “Frankenstein” walk with knee braces that lock my
knees for standing and stiffing my legs bearing full body weight.
Second type is “more natural” , knee bending walk and I am able to do
it @ MacWheelers gym in Hamilton Ontario, thanks to the staff & students
of McMaster University / Kinesiology / Volunteers.
Twice per week by 30 – 35 minutes I am walking with half of my weight
suspended over the treadmill and 2 students are helping me with moving
and positioning my feet.
With 4-AP-3-MeOH (2 x 0.5 mg daily) that i am taking for the last 4
weeks, I am actually improved and hope to keep improving by
lowering suspended weight (from 63 to 50 kilos just recently) and
increasing frequency of good steps.
Again, I will keep “monitoring” and I will post any changes here.
Your comments are welcomed!
Sincerely,
Zel Komadina
Miracle of Walk
MIRACLE OF WALK PROJECT 