It has been a super long time since I wrote here but today i felt inspired.
It has been almost 2 1/2 years since i was in India  for a treatment and I was always wondering how i would go without having to be back there?  Things have definately changed in huge bounds since then!!  I walk soooooooo much better and many things have improved.  Although, in the last 6 months I have plateaued and feel like I might need to go back? 
Over the last  2 1/2 years I have seen better control in movement and a stronger body that didnt even function before i started this whole process.  Examples are my ability to stand on my knees and get up off the floor from a kneeing position (that is on knees only with only hands on chair or other object for balance) and push up and twist onto my wheelchair.  There has also been more toe movement.  I also have a stronger bladder function with longer notice and some control.  I don't use catheters.  And no more UTI's for about  3 years!!!

So when I look back and think about what I have done and what has transpired I say wow! what an adventure and has it been worth it.... ABSOLUTELY!  I don't know how far things will continue to improve and this may be it and that is somewhat fine with me (everyone always wants more) as the treatments have made my life so much better for daily function.  I have seen that working on my own is slow and I do need more neuro-physio but i can get change on my own.

Will another treatment occur? will it make further changes?... probably.... but i need the funds. Time will tell...
In the mean time i need to focus back onto hard working Physio as I have slacked off in the last little while with all the moving around and not finding the right help. 
So if you are ever considering doing the HeSC treatment i highly recommend it!

Building Week by Week

For those who have read my blog previously, change is very slow and takes what seems and is years! For those who have not read the blog do and you will get the sense of what I am talking about.
Its been 6 weeks since I returned from India and most of what has changed from the treatment is very subtle and change comes about with physical therapy. Basically, moving the body parts gets the nerves firing and doing it over and over and over and over and over..... again makes me work. The repetitions are exceedingly boring but I keep on keeping on to hope things will work better and changes will come about. I am at a stage where now we get picky and have to narrow in on things to make them functional. I have the majority of gross motor movement in all of the body parts that were paralysis 17 1/2 years ago and now its about putting it together and making it non-therapy ability. Which, if you agree is pretty awesome considering 3 years of treatment and 17 1/2 years post injury (good ratio)!!!!

Being in a wheelchair is definately not good for your body and unfortunately for someone like myself it is a necessary evil. If I could spend a majority of my life out of the chair I would recover 1000 times quicker but we have to work with what we can.

Changes that I have seen since last treatment from mid September to mid October with a bit of a break right after have been:
-Sensation improvement in core, gluteus maximus, and ability to recognise different surfaces through feet without looking.
-Stronger movement and balance in lower limbs
-crawling to kneeling is much easier (can kneel with one finger on one hand for about a minute without losing balance (no assistance needed to get that position and none for any kneeling)
-I can contract muscles specifically in abdominal (targetting) and in quadriceps.
- better hip hiking, now trying to bend the knee slightly when hip hiking, and able to do little little pushing up on ball of feet when standing using the walking frame.
-Have also tried and was successful on a couple of attempts to use crutches without someone holding on to me (but not able to step forward) Working on pulling butt back, keeping abs contracted and less arch before trying crutches again
-have also tried stepping with assistance about 2-3metres with exagerated knee lift and putting large amout of force downward with bigger steps in parallel bars
- have also been able to walk with both ankles unlocked with 2 degrees of plantar flexion. Was able to use left unlocked for a couple of weeks but ran into difficulties and switched back. Will begin again this week.

To prevent you from becoming bored and sleepy.... later mate!

Days pass, change come...

Here it is 3 weeks into it and time passes so quickly. Between weekly procedures and daily injections, taking care of business and having 3 physio sessions a day, vrrrooom and 3 weeks go by.
Since the mass injection s make you very tired after and take heaps of energy out of you, your immune system can get supressed and make you vunerable to what ever is out there. Of course you are given multiple antibiotics and they help but at the same time they make you feel strange and sometimes make you feel tired or ill in their own way. As for myself, i picked up a nasty cold after one of the procedures from a week ago. So that made me feel like crap and then drained my energy more..... but the show and physio goes on!!

I have had two Caudal injections, one 2 day epidural, two IV drips in the hand, and each Monday and Thursday I had DSM injections at my injury level. I can only imagine what I will have next week (my last week).

As a result of my stem cell injections and the hard work of physio, I have now witnessed more changes. In a short description the following has occurred in 3 weeks:

-improved movement and strength in my lower leg extensions and lower leg flexion on both legs from a side lying position on the bed. Approx. 30 degree range of motion now. I can also move a med ball forward with leg extension from sitting on the edge of a bed.

- I am now walking with less of an arch in my back and with better balance and much more prominent steps from the knee. My endurance and length of walking has also increased.

-my bladder function has increased with the volume expelled increased and with less effort.

- crawling has improved a little and crawling to standing on my knees is much much easier along with less pressure through the hands when standing on my knees. I can hang onto something with only one hand while on my knees. From that position I am able to rise and squat with less arm support (about 30degrees range) before losing control.

-I have now also begun hip hiking in the parallel bars on one leg, lifting the other leg up a small step of about 5cm plus. I am also able to stand without the AFO's for about 10-20secs with the right leg but able to maintain the right leg locked for longer.
- I am also been practicing holding with one hand in the bars while reaching forward and across the midline to touch the PT's hand without knees buckling.

-measurements were taken of quads/hamstrings circumference and are 38.6cm L and 38.88cm R. This is a significant change of approx. 7cm larger than 1 1/2 years ago. Calves were also taken and are less but measure approx. L @ 30.8 & R@31.2cm

Well, the sun is calling me! got o go... that is the latest...
See ya mate

2011 INDIA

Nameste!
I'm back for more Stem Cells..... Its been 1 1/2 years since I was last here and the staff have noticed many changes in me since I was last here. In fact I stated to Geeta that recently I made an improvement in movement only 2 weeks ago. This could be due to physio and might have been able months ago??
The procedures have changed a bit with the way stem cells are administered but the general practice is much the same. And many of the physio's and doctors are different, but.... Geeta is the same!!
It seems that I am getting more stem cell injections daily (2-5 injections) and with my first procedure, the EC (epidural catheter) for 2 days at Gutam Nagar I received 3 mass injections on the first day and 5 mass injections on the second day 2 hours apart. For myself they are no longer requiring me to be lying down with my feet up and head down. This is good news as I hated that part and was so hard on my head. In fact excluding the first injection that day, i didnt have lay down at all just stay still and quiet for the day in my room watching movies or reading.

They are giving DSM injections on Mondays and Thursdays in the hospital while sitting up and I had 2 injections in my hand which is quite different than previously.
The rest of the processes are similar with the daily routine of nurses wanting BP, HR, medicines taken, blood given, etc.... Physio for myself has also changed. I am now having 3 shorter intense sessions a day instead of 2 a day.

After being here just over a week and one procedure down I am already seeing some small changes with Quadricep extension in both legs producing movements that were not there in the Left leg and stronger in the right leg (this is in the side lying postion). Its around 30degrees in range. Also there is much stronger movement in hamstring flexion in the same position with the left leg. There is flexion movement in the right leg but weaker.
I was very jet lagged when I arrived and a bit of Delhi Belly on the second day but now I am feeling more normalised and I am seeing things come together with good rest and time adjusting. However, the stem cells and physio are giving me heaps of fatigue on a daily basis.

Today I have another procedure (Caudal) and we will see what comes about.
Physio these days includes bed exercises (including core ball exercises while sitting on the bed. Mat exercises for crawling, balancing, kneeling on just legs while up against the wall and trying to not hang on. I have also began trying to do squats on the floor.
Of course there is walking and trying to go further and with better steps. I can already see improvements. We are also doing muscle stim with a TENS machine on my quads for 5 mins and are generally increasing the stim each day. Well that is about all for now.
Keep checking for more up dates.
Nameste all followers. And Gday to all the Aussie family.

Been a long time

Well, I know its been a long time since I wrote anything but finally I am here!

Since I was last in India alot of stuff has happened. In terms of my recovery... WOW! Such a change. I wonder what Geeta will think when I return to her in the near future?!
Its been a long hard journey and I keep on working hard to make small gains for a better returning functioning body. I have had the ups and downs of trying to make a non functioning body of 17 years plus come back to life.... Most of the work I do is strictly me alone.
In my new place of residency (Victoria, BC) it was very difficult to find a rehab place that would take me on or could provide the expertise to provide Neuro knowledge and rehab related therapy.

I did work with a very determined Exercise Therapist for many months and she was very good at assisting myself to keep the process going. It was beneficially working with her even though we fumbled in the dark trying to make improvements I was unsure whether it was being successful. Although, I believe all work that I have done has been beneficial. Unfortunately, I think the key missing links were the equipment and Neuro experience. My hat is off to them for trying. Thanks

But Just when I didnt think it was going to happen I found somewhere more specialised in Victoria!! The facility is called PATH. and the therapists work with people with neurological dysfunction. The programme that I am currently working on under my PT comes from the business of Project Walk that originally was established in San Diego, USA. Good on them!

Funny enough I actually managed to get into Project Walk in the first week of Jan. 2011 (even though I dont fit the criteria) and went down to San Diego to get a programme set up. Their facility was amazing and had all the equipment that i had been looking for for the previous 9 months that didnt exist in Victoria. I tried many things once, such as a stationary bike, walking up and down steps assisted, a squating machine, etc.... Once again I was new to their eyes, someone who had had Embryonic Stem Cell therapy! An unheard of thing and to have such results!!!! They were very interested and after seeing what I could do and heard what I had experienced they are seemingly now interested in combining their process with people who have or will have stem cell treatments in the future.

Then a few months later I found Jenny who had been trained by Project Walk under their programme and she has now taken this Dardinski Method and is treating persons like my self here.

I did also visit another clinic that has newly opened in Victoria, called Neuromotion Physiotherapy. It offered me another amazing experience as they have a machine called Lokomat. This is a machine from Switzerland (and extremely expensive and rare in this country) that operates over a treadmill and what takes place is, the person is put in a sling and then the lower limbs are strapped into an exoskeleton device that makes the proper walking gate for the person. The idea is to promote stimulation of cells in the brain related to movement and excite the neurons into possible reconnections. With this repetitive process it is hoped that reinnervation may take place. The machine can be adjusted for increases in weight bearing, increasing pace (up to 3.5km/hr), increasing the increments of body function with releasing straps in the harness that support the body, and decreasing the function of the machine so that the client must work ones body more and more.
I participated in the 1st 7 week programme and currently taking a break and deciding whether to continue for further sessions. I could definately feel the nerves stimulating when using the machine, with burning and tingling occuring while walking on the treadmill and using the Lokomat. The sensations only occurred when I was in motion and would stop shortly after I stopped trying to move. Even though the machine did the motions, I too would be trying to make the same motions.

So Currently I am now working 1 day a week with Jenny and we seem to work on the core HEAPS! and this is what I need.... doing everything from boxing, boxing standing up in a frame, kneeling balance, kneeling balance using a box, squating using a sliding machine (cant remember the name), and of course on the plynth doing many variations of core exercises. I have also been riding the stationary bike, assisted and unassisted. When using the bike it takes a few minutes to make the pedals go all the way around under my own motion but eventually I am able to ride unassisted. After I have had an interval, the following intervals are easier and easier and I can almost start unassisted and then I can continue unassisted. The majority of my improvements as seen by myself and Jenny are my abdominal function and lower back function.
The strength in my lower limbs continue to function for walking but seemingly have not improved significantly. That is not to say there hasnt been improvements.

The List of Function:

Since I began this process almost 2 yrs 8 months ago I have gone from T5 complete dysfunction below that level to:

1) Core, all abdominals functional 100%, noticeable change in posture, ability to flex muscles into pelvic muscles, can perform crunches, sitting from laying position with arm swing
Lower Limb
2) Adduction, Abduction functional use
3) Gluteus Maximus' working and very strong, left more developed than right, noticeable growth in muscles
4) Bladder Function: ability to sense when needing to urinate (up to 3-5mins notice), ability to initiate urination without catheter and empty bladder 60-80% of volume (improving with time)
5)Quadriceps weak function, approx. 70% functionality, ability to walk, lock and unlock knees when standing and walking forward, backwards, and side ways. Can extend legs 20 degrees approx when seated against bed
6)Hip flexors strong functionally, can crawl forward and backward in combination with other working muscles
7) Hamstrings weak but initiating and mininal movement.
8)Dorsi and plantar movement at ankle minimal, however noticeable
9) Left and Right feet, big toe movement (small), toe flickers of movement in both feet in second and third toes

Overall Function:
Ability to walk independently with AFO's (start 5cm below knee) and walking frame for 8-10metres inside and outside of home
-Return of Bladder function
Sensation change in core to approx. T11 and change in proprioception in lower limbs and knowledge of change of environment in feet without visual knowledge
-improved blood circulation, superficial veins return, reduced oedema (minimal occurance as opposed to previous oversized swollen ankles at the end of each day).
-Bone density change, test completed December 2010, test stated lumbar area near normal, Sacral near to Osteoarthrithic, Head of Femur Osteoarthritic
-increased size in lower limbs and increased definition in muscles (muscle measurements done from previous treatments)

The Test

I think the hardest part of doing a Stem Cell treatment in India is having the people you know personally understand what it takes to do the treatment and the sacrifice that is required. Often I wonder at what sacrifice does one make to bring about change?? I guess you have to put your head down and charge forward and do what ever it takes no matter what anyone says! That is easier to say than to do... cause life isnt that simple. But, i reckon that is what it takes to get something done that is a world medical first and cutting edge....
I guess this is what it is like for researchers who are trying to create new innovative things, just like Geeta. She has put in such an effort in keeping her research project going and ignored all those who have doubted her. She is such a strong person and for that reason I admire her and she is motivation to keep going with this enormous undertaking. I am also motivated for many other reasons. These include (the obvious) being disabled and having to live a very difficult life and being in a world that is not accessible and possibly making your life span shorter due to all problems that will transpire over your life in the future.

When I was at my last procedure and laying on the bed for hours with feet up and head down, I had plenty of time to think and ask questions (a true test of one's will). One of the questions I asked Ashish was, so when does one stop coming to have the Hesc treatment? Answer: When ever you no longer see any further improvements or when you are satisfied with the improvements that you have received and no longer wish to come back. In saying that, Ashish stated that after this treatment (3rd one) he tells his patient's that they are not to come back for a minimum of one year if future treatments are required.

It has been two days since I returned from Gautam Nagar and the Epidural Catheter came out. Since then I have had huge spasms and in need of serious stretching. At first it was difficult to walk cause of the spasms but after a few goes things started to relax.
After the procedure there have been a few changes which are subtle but noticeable. I am feeling stronger contractions in the core area and even with rest and feeling tired from all the stem cells injected I felt stronger in the core. I also feel heavier in the legs and once the spasms dissapate I felt a little bit stronger in parts of my lower limbs. We are now beginning to try hip hitching in the avro. I am standing on a low box and trying to step up on one leg and then lowering and raising the other (straight legged) from the hip. Dipin is pushing with his hands to help lock my knees while I am doing this... The hardest part is trying to step up onto the box and I need help to hold the knee from buckling and to be able to raise the knee up onto the box.

Today (Friday) we are trying the ball balancing again and I stand up in the parallel bars and sit down onto the ball. The balancing takes a few minutes to work well and it is better again today and keeps improving gradually each day. I am also doing the box step up and down and hip hitching. The biggest difference with today in these movements is..... I am not wearing any AFO's!! Yes, I stood up today in the parallel bars without any AFO's, only with Dipin helping locking my knees. So I did the hip hitching and step ups without AFO. It was very difficult trying to step up and down and I needed heaps of help. But it is a start. I can stand without AFO's and no one holding one knee but I can not move like that.... for the time being.
Well before everyone falls asleep I will end here.

Continuing On

Since I last wrote I have had 2 more procedures.... I had the dreaded "lumbar puncture" and another DSM injection. I say the lumbar puncture in quotations because it isnt actually in my lumbar region but it is still a widthdrawal of CFS fluid and then injecting of Stem cells. Again I am warned about staying still and the possibility of headaches, vomiting, and nausea. I guess I am very lucky on having a great system that recovers well, since I did not have any of those symptoms! yahooooo! The hardest parts for me are sitting still for hours with my head down and feet up with the blood running to my head. I noticed that my butt is sweating and feels uncomfortable being in one position for long periods. Its some kind of internal feeling???...

After surviving a night in the other place and being uncomfortable and not sleeping much, i am taken back to Green park midmorning to rest in my room. No physio today, they dont want to you to exert yourself after such a dramatic change to your system. The next day its just a light physio session as a preventative. Although, I am itching to get up back on my feet and go, as I feel pretty good.
I have noticed at the next physio day, (even though i am still very tired) that my legs feel heavier, and I have lower abs contracting like crazy and seemingly my core feels stronger and I can sit up easier? Today I have heaps of spasms in my abdominals! After the procedures I tend to become much more spastic and then after a few days things settle down.

A few days later Geeta came to see me in Physio and she is checking out my ability to move on the bed with exercises. Generally my physio states that I have improved in balance and core strength since I have arrived in Green park this trip. Geeta also watches me in walking and within a few minutes she is having me in the parallel bars and demonstrating how she would like to see me walk (like a normal person). Geeta demonstrates the proper gait technique and I try it! I get the concept but to try and do the motion is near impossible... however my left leg is seemingly better at it. I try it a few times and I manage to get a few steps in correct and then i sit down. This is the final stage in gait technique, whereby, if you can do this, then you are making the same movements as a "normal" person. This means I wont have to change my gait anymore after mastering this stage!!! Can you imagine....

One of the main things that any wheelie has to battle is..... stairs. So the next thing I am going to try is getting up on a step and to hitch my legs up. Next!...

At the end of this week I now have to have a DSM procedure..... another and another, luckily it is only in the same hospital and I only have to lay down for an hour. It means missing another physio time :( Luckily I am able to go on my own and walk in my room and in the bars at some stage during the weekend. This way I am able to keep getting on my feet and practice.

I have now been here for 2 1/2 weeks and with all the procedures and being constantly on antibiotics, my bladder function has gotten worse instead of better. They are trying to prevent infections but at the same time the medications mess up your system in many other ways. Well, I am sure things will straighten out once I leave an go back to some state of normal living.

This week we continue with the swiss ball balancing and core strengthening, along with walking, balancing on knees, and today, hip hitching so that we can advance to stepping up.....
I am due to go for an epidural catheter procedure today, which means going to Gautam Nagar for a few days and being poked and prodded again. Fun with drips, here we come!! Hopefully I wont go crazy while I am there. Time for a massive flooding of stem cells!