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!

Procedure 2

Yes, I know its only been a few days and already a second procedure! Its monday and we are doing physio this morning. We are then going to Gautam Nagar for the procedure in the pm. Its an one day epidural injection. As it is here things never go according to the outlined time line. We are meant to go over at 11:45 but it ended up being 12:45. After the prep work of antibiotics and an IV is hooked up I am rolled off to their OR. This time I am prep'd and then the epidurals are injected multiple times at about T8-9 occurs and my body receives these strange waves of warm sensations, spasms, and tinglings. Not many minutes later Ashish says how do you feel and what are you feeling. I tell him about these sensations and he says very good, very good. Then he goes down to my inclined feet and says, "try to wiggle your toes", "start with the big toes, and then the outer toes". I state that I have previously been able to move the big toes on each foot but not any others other than the 5th toe ever so slightly on the left foot. But now Ashish is telling me that I just moved, individually my 2nd, 3rd and 5th toes on the left and the 2nd and 3rd on the right foot. I ask, is this noticeable or just minimally? He states that some are minimally but has seen them distinct movement in each.
A video was recorded and will be sent to me in a few days. Cool. I hope to post this soon.
After the procedure I was taken back to my room and I had to lay still on my back with my feet up on the 2 bricks holding my bed up for the next 4 hours!!! Now this is the hard part... with blood flowing to me head and having to lay still. I also found that my butt was sticking and sweating from being in the same place after about 2hrs. Good thing it is not hot here.
I never look forward to having to do this... can't wait til I have to do the 2 or 3 day one!

In the following days at physio we have been working on increasing the walking distance and doing Swiss ball exercises over head and holding for as long as I can, sitting on the swiss ball and doing bouncing on the ball 100 times to increase circulation in my spine. Along with these exercises comes balancing without hands on the swiss ball and rotations. I am also on the mat doing kneeling with squats and holding on with one hand, etc.

I havent noticed too many changes but seemingly my abs are getting stronger with better balance and stability. My legs feel heavier after 3 days post procedure and I continue to feel more time zone adapted and more energised. Well that is all for now.

3rd Time lucky

Welcome Back to India Sir!,

Well here I am again in Delhi, India for my 3rd treatment. It was a long long trip and with an early early start from home I was exhausted when I arrived on a cold and very foggy night. On the drive from the airport to the hospital the visibility was maybe 100m ahead due to the huge fog and terrible dust. Welcome to India, home of pollution!
After a very uncomfortable sleep I was up for my first morning (21 January) and "Hello Sir, Stem cells?" Yes, no mucking about, straight into it with the injections. The down to Physio for an assessment and up on my feet to show for the camera. Later that day all I could do was talk to people so I could stay awake and begin a normal day on Friday. I made it to 8pm before I had to go to sleep.
I have a new physio, his name is Dipin. He is the only Indian male that I have seen who isnt terribly short (same height as me, and I am no giant).
This morning I am still very fatigued and have a UTI (good way to start hey?) but we go through the motions to start the exercises and then a brief walking distance. It is better already compared to when I arrived totally fatigued.
When I return to my room moments later Geeta arrives to meet me and talk shop briefly. She always looks in good health!! I am informed of my 1st procedure to occur this avro! Its a minor one but mate!, there's no mucking about.
The injection is given here in the OR in Green Park Hospital so therefore no need to transfer to Guata Nagar. So, I wheeled up to the 3rd floor and they popped me up on the bed and Ashish went to work. The injection was to be put into the spinal muscles on either side of the vertebrae a few levels down from my injury (so about T8). Now, when I had these DSM (deep spinal muscle) injections previously I could not feel anything.... in this case I was totally suprised and OW! did it ever hurt!!!! Oh it was a big suprise! Ashish, says; wow that is great! It may be good that the sensation has changed but pain is never good.... atleast it was very brief.

For the Green Park physio staff its the end of the week and usually we half the amount of time in exercises. Dipin has started me with doing some different core exercises which I think will be very beneficial. What he has me doing is, lifting a swiss ball over my head with arms extended and holding it for as long as I can till i loose balance, and repeat.... We are also throwing the swiss ball back and forth as quickly as possible and at different angles. I was actually suprised at how good my balance has become (I havent done this exercise for a while). On the bed we are also trying to see if I can bend my knee while laying down. Dipin gives a little assistance and I am able to make the knee bend even when in laying flat. The left seems a little weaker but its hard to tell. I am also back up on my feet to continue with the walker for a couple of short walks as I am still feeling fatigues with the UTI and all.
Even though there is no Physio this avro, I decided that since I wasted time not walking for a few days with travelling, I will do some more in my room on my own. Since I can.... why not?
It shall be interesting to see how things progress??
Well, that is about it for the intro.... catch you later.

The Big News Is....

ok, so it isn't Tuesday but Friday.... so the news was, I have began to not use a catheter to urinate!!! One small step for mankind, but one Huge step for Kevy. Well now I have to keep practicing to pee and hopefully it will get better. Now that I am home I will have to try and keep up the hard work with the PT exercises and to keep walking. Wish me good luck.
Big changes are suppose to come in the advancing months.... so we will see.

To Finish "The Set" with a Bang!

So sports fans I am coming to end of another chapter in my journey to India. In the last week I was given a big Puncture injection whereby they withdraw a little bit of spinal fluid and replace it with Stem Cells. This procedure can give the most results in terms of repair. HOwever, it comes with the most amount of impact and challenge to the body. Often patients get headaches or nausea and it can be very difficult on one's systems. In my case I had no issues. I am lucky man! I don't know if it is due to my physical fitness or strong mind set but i will put it down to that.

After this procedure I was very tired and took the next day to rest and only do passive exercises with the PT. In the next 2 days I didnt notice much of a change, a few little things but nothing major. Then on Wednesday night, BAM! It happened and a major change occurred.... (unfortunately I can't tell you what it is until I get home and suprise my family on Tuesday). Sorry you will just have to be patient.
Then we worked on the walking in AFO's more of the time this week as it has been deemed that the calipers made here keep moving and I bend my knee while trying to walk. I am not going to buy these and try to walk with a different device from home. The walking with the AFO's is slowly getting better and Geeta stated that when my quadriceps become stronger I will definately be able to walk with them in the walker like I was in the long full length calipers. Cool hey!!!
Then on the last day (Saturday) I had one more trick left to throw into the ring and when I was walking forward with the AFO's, I asked what would I have to do to be able to walk backwards? So, we (Vannada) and I talked about the motion that would be needed to go backwards and she demonstrated it and so I stood up and tried it. Guess what? I could do it on the first go and did the whole length of the parallel bars in AFO's!! I think i can walk bloody well backwards better than forward :) I guess you never know until you try, eh!!

Well, that is it for this trip to Delhi and now I have to keep up the therapy and the walking. I have been told that with time many more changes will occur with the work in the legs. I look forward to seeing that. Also, tomorrow a group of patients from here will be going to one of the biggest temples in India, even bigger than Taj Mahal. I look forward to that and I will be posting some pics when I get home too. So on sunday late I am out of here. Keep you posted. Look for my info on the big change on Tuesday....

The Slacker is Back

I haven't been writing much cause i have been very busy.... and that's my excuse and I am sticking to it!! Since i last wrote I have had two procedures, one each week. The first one was an easy one where by I stayed in the same hospital and return to your room to only lay still for one hour on your back. The procedure is a Deep Spinal Muscular injection (2) (DSM) which are injected, one on either side of your spinal cord and near to the level of my injury. At this time Ashish wishes and so do I, to concentrate on focusing on the abdominal area and help the return of my bladder function. Usually, i don't feel much of a change other than tightening and a deep heavy feeling in my core and legs at the time of the procedure. I then wait a day or less and i begin to notice changes. In this case, it was the same and the next day i had much tighter abdominals and as time is passing here I am noticing my awareness of wanting to urinate has changed and I definately know when i have to go to the toilet. AREN'T YOU GLAD I TOLD YOU THAT!!
Physiotherapy continues twice a day and my movements continue to strengthen little by little... good thing I am a patient person.......

At the end of this week I was told that I will have another procedure at the beginning of the week. The next procedure is the "3 day" with an epidural catheter put into your spine. Generally, the injections are not given at T5 (which is, or i should say was, my level of injury, as this is at the level of important organs, such as your heart innervation.. Just of minor importance.... Of course we don't want anything going wrong with that, right?
Then after the first series of injections I was taken back to the room and had to lie on my back for 4 hours with my feet up and head down and then after the 4 hours receiving another series of injections into the catheter and lying on my right side for 2 more hours before being allowed to get up. Getting up after laying for 6 hours is tricky, but getting up after recieving stem cells by the bucket load and having your head down and feet up is another thing!!!!!! Oooooooh la la! No wonder they check your BP and HR often. But all was well with me. The only thing that kept my sanity was the idiot box and movies.

The process continued with more injections over the next 2 days and more laying in bed with the feet up and head down. I survived the procedures and now we will wait and see what changes will occur..... After the last few days I now feel a bit sore and tired as I know that the injection of stem cells take a lot of energy.

Further updates will come when some changes occur. I now have 11 days left before I return home.

Things to Bring when at NU Tech Mediworld

If you are planning to come to Delhi and stay at Nu Tech Mediworld I highly suggest bringing the following items:
Gaffa tape (duct tape) cause it can fix anything! Some things just need to be adjusted.... for example a comode chair used in the shower can pop off and slide around and dump you on the ground. Solution: Gaffa tape works everytime

Scissors: Good for cutting milk containers and anything else that can come in the way, including Gaffa tape!

Mosquito repellent: Cause they are nasty here!

Gatoraide/Poweraide: to help with electrolite loss from working hard or Delhi belly!

Potato peeler: good for apples, carrots bought outside at markets (if you dare) and other fruit cause it can cause those with weak stomachs Delhi belly!
Pepto Bismol: Good for Delhi belly! Seem like a reoccurring theme!??

You're own pillow: The beds are hard enough, a little comfort from home will go a long way!

Probiotics: They tend to give you antibiotics for each procedure so you willl recover much quicker if you bring a bottle of 500 mg probiotics with you.

Patience: cause you're going to need it.... This isn't Australia mate!

Note: An Interesting experience I have had is noticing that some toilets in the hospital have this little steel pipe that comes out of the toilet seat and squirts water if you want it to. The reason for this pipe, some religions here do not wipe themselves with toilet paper but rather use sprayed water. Only problem is that if you are someone who doesn't have sensation in your bum and you don't notice this pipe and sit on it you can get a nasty cut you know where!!! Solution: Gaffa tape, of course!! Just pull the pipe back and tape 'er down mate! You are good to go!

First Procedure

SSo i have survived my first procedure on my own. Luckily it was for only one day..... i dont know what improvements that will occur. I do know that my abdominal area day (being the next day) has begun to feel tighter and i know that the procedure has tired me out. But it was back at the PT this morning. So now its time to chill and get my stomach back to normal from the Delhi belly.

When i stand up now on the AFO's i am having much better posture and we are practicing the basics with weight shifting and bending the knee and lifting the feet off the ground. First the basic ground work and then when set on to the walking forward.
Well, its definately moving forward and I have to just be patient.
More updates later when more changes arrive. So far so good.

Back to work!

I have now been through two hard Physio sessions and I am beat!! Its been 6 months since my very first stem cell injection and 4 months since i left Nu Tech Hospital and much progress has been achieved. Well I have demonstrated that many things have changed and now the approach is going to be much different. Now the approach is to make things much more functional.... especially since I am using the AFO's and can stand and make real movements in walking. The first few days we are going to concentrate on getting perfect posture with the AFO's. I am now working on shifting weight with the hips forward, backward and sideways and then being able to lift the foot off the ground.
We are also advancing the crawling by starting crawling and moving into a on the knees stance and moving forward while holding onto a frame in front of me and then moving my knees forward. We are also trying to strengthen my quadriceps to make the movements and supporting all that body weight on my knees. While on the bed in Pt. the physio is putting heaps more resistance on me and the movements and mate I can feel the body working.....
As usual I have to sleep on the very uncomfortable bed and even with an air mattress it is very disturbing to sleep. I have another idea to make my bed more comfortable and i hope it works tonight cause i havent had a good night yet and i am running out of energy. Its hard to work physically when you wake up in the morning tired.
Otherwise, its nice to see the staff again. They are so good to us and so helpful to make us comfortable. I have been out to the shops once and nothing has changed....
Well, thats it for now for my faithful readers. I am off to my first Yoga session of this trip. Should help with the sore muscles??
More later.....

the return

Well, well almost four months and I will be returning to India in 3 weeks for the 2nd treatment in
Delhi. Its going to be a very different experience since i already know what to expect. There won't be as many suprises. Its a bit of mixed emotion to return because i dont look forward to the pollution and garbage everywhere. At the same time i can't wait to seem what help i will get and how they help me improve function. I also will be showing some suprises....
When i am back there i will post further changes and what has happened to me in the last 4 months at home.
Hope you stay tune....

Some Things goiing on....

Here are a few photos of me..... the first is me try to balance on my knees with only one hand while i lift the other in the air and the second is me trying to crawl for the first time forward and back wards. This was very very very very difficult. Its a big learning process and a lot has to do with whether i have enough muscle function occurring and then trying to re-learn the control in the brain....
The second day i tried it was a little bit better. But its going to take a long while with some assistance.
Enjoy....

The Next Step

Hey Boys and Girls how is everyone goin? Salut mes amis du Canada! I have entered into the last 10 days and I know I have a lot of work to do before I leave Nu Tech MediWorld, Delhi, and India.
We are into mid October here and the days are starting to get noticibly shorter with the sun setting around six pm and its suppose to be getting cooler.... I would say its a little bit cooler at night sometimes but during the day its still around 33-36C depending on the day!!

Therapy continues with the same regular routine and things are getting more demanding with more exercises and with resistance and the activities are graded harder. I am also trying to walk further and further and to have better control along with better posture. With increased function in motor control in more and more muscles in different areas below my injury the more i can do and the more i have to practice.

Unfortunately, this week has started with some building problems as the lift broke down on Sunday night and they were not able to fix it (as any Indian can be a repair man :) ) So for two more days we had to wait up stairs and do the physio in our rooms and walk on the floor. A bit of a change is always good. However, by the 2nd day i was getting a bit restless and wanted out. On wednesday it was fixed and now we can escape!!!!

I had another procedure this past tuesday which was a DSM (Deep Spinal Muscle) injection and was a very simple procedure that only took about 30mins and i had to lay down for 2hours. Now i have wait and see what changes this will make.

The muscle contractions are getting stronger in the areas that have started and I am getting more contractions in areas such as my ankles, toes, hamstrings, and quadriceps.... as things become more definite and stronger I am thinking about how i will have to make them functional by putting the motions together. I have been trying to make movements and do functional activities when i am not in physio (eg. sitting on my chair without using the back).
I have now been able to extend my legs about 40 degrees while laying on my side with my legs bent at 90 degrees with by using my quadriceps. Basically extending my hips using a combination of muscles. But hey i will take anything as long as i can move things that didnt move before.
Any Canadians out there who will like to comment about the blog?
Later.....

This week on the Tuesday past I was back at the old hospital for what they call the Lumbar Puncture. It isnt exactly a lumbar puncture for someone like myself because they don't need to go that low.... However, it was injected fairly low down as my sensation is fairly low now. During the time in the OT. I was able to feel Ashish pushing his fingers about on my back to test me out to about T10-11 and then inserted some anesthesia. Then the puncture tap was inserted and fluid was drained and then stem cells were injected. After the injection I felt quite a few sensations such as heaviness throughout my body, seemingly feelings of connection of electrical currents were flowing through my lower have of my body, and of course there were a bunch of spasms. This time the spasms were not as much as the previous procedures.

The next 5 hours i was on my back laying motionless trying to not move my head while the bed is inclined with two bricks and the blood flowing to my head. The idea is to prevent oneself from getting a headache and nausea and the way to do that is to remain motionless as possible. Luckily I managed to get through the evening without any headaches, etc. After this time i was allowed to roll over to either side or lay on my back for the remaining next 12 hours (08:30 the next morning) with only one brick. During all this time i had an IV stuck into me with a drip that was replaced 3 times, which means i had 1.5L of saline pumped into me with multiple antibiotics to prevent infection.
It was a mental and physical challenge but i made it through the 24hrs and no complications! I was feeling quite weak and tired. The next morning i went down to physio and did some light exercises and standing along with walking. I still felt weak as one would after such a procedure.

After a good sleep the next day I was ready to work it out and see what happens...... Well, on Thursday I did a decent phsyio treatment with walking in the walker but no crutches since i wasnt over energised. There weren't any changes that i noticed because I was too fatigued to notice them.
Friday, and yes there are some changes which i am truly amazed with!!! Now i have to work on making them functional. I am talking about moving my quads and lifting my quads in an adducting movement which is against gravity... Pretty cool hey..... Well that is the latest speil...
I will keep on keeping on.

Over Half Way now

Now it I have been here for 5 1/2 weeks and things are moving right along.... After the procedure I didnt notice anything right away. However, there were constant spasms occurring in my abdominals and my bladder. This is a good sign but it makes it difficult to sleep and when I went to move I had to pause until the spasms subside.
After a couple of days post procedure i started to notice some more changes occurring such as: contractions and movement in both legs in the quadriceps, contractions in my hamstrings, increased strength and movement in my lower abdominal area, adduction movement from the end of range of motion on both sides. However, the right is weaker than the left and moves about 30 degrees and the left can move approx. 0-50 degrees. Just to let you know these movements are very weak and require some support from the Physio but never the less i am moving my body parts on command!!!!!!!
Unfortunately, my improvements have been under minded by a UTI, AGAIN! :( This UTI really sucks the energy out of you and since it has been dragging on I have asked to get the medication that i know will work for me. Now that I have received the right prescription i will be sweet!....
Something i thought i would like to point out, the physiotherapists and all of the staff are great here and are so patient and very dedicated to give the patient's to best opportunity to help with recovering from whatever there disability or disease. Geeta & Ashish live, breath and eat Stem Cell therapy..... so compassionate about their work/treatment and are constantly encouraging their patient's and try to explain what is going on with each patient's treatment. Even though Geeta is running two hospitals and doing research, etc she continues to come and see how the patients in the physio room are going. I am inspired to make sure that i am professional who will do the same with my patients.

So while i am here I will continue to push my body to see what will happen and make the most out of the treatment. I dont think i will get nearly as much support when i return and will do the majority of work at home. Go baby stem cells go!!!
By the way today is a holiday here in India, its Mahat ma Ghandi day, so no work today. But i did get up and walk down to the lift and back twice.