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.