Rusty Without Wheels

I’ve neglected posting lately, lots of things on my mind and happening in my world.  There have been some subtle changes in my body.  The sensations I’ve had in my thighs, knees, and feet have intensified.  I am aware of them all the time now.  Before there were times when the nerve/muscle sensations were very active and I was conscious of their presence, especially during and after exercising.  But at other times they seemed absent.  Now when I attempt to curl my toes, the nerves tell my brain that they are curling all the way under like they could before my injury, but there are only slight trembling movements in the toes.  At times I’m not sure if it isn’t the muscles in my upper thigh and buttocks that aren’t causing the movements in my feet that I’m taking for toe movements, they are so slight.  Lying in bed trying to raise and move my legs, it feels like I should be able to raise my leg easily to an angled position.  The strength of the nerve/muscle sensation is that strong.  All that happens is that I can visually see the upper thigh and abdominal core muscles tighten, which gives the illusion of movement in the upper leg.  It causes a shift in the whole leg that resembles an upward thrust of a leg being raised.  Now, I am aware of the nerves and muscles in most of my lower legs all of the time.  They are a constant.  There isn’t a moment when they aren’t letting me know they are present, buzzing and tingling.  Such an odd sensation to be feeling these things at all.  There were a lot of years when there was nothing, no sensation or feeling.  In some ways I know this is a miraculous thing, but in others I ponder the ramifications of it all.  Is truly feeling more pain a good thing?  Is it right to hate to get up in the mornings because of the struggle to just get out of bed is so intense, with my body being so stiff that I can hardly move and the pain screaming through my nerves?  What part of living seems so worthwhile?  There are a lot of things to think about.  For now, all I can do is keep working at it and hope that someday I see some motor control of the muscles in my lower body and that my body heals itself.

I still haven’t seen any development of bladder or bowel sensation.  I can still urinate if I can sit on the toilet, but still can’t go sitting in my wheelchair.  Don’t know if this is a purely psychological block on my part or if positioning is the all important aspect of being able to go.  Here again, all I can do is keep trying.  It will either happen or it won’t.  Worrying about it isn’t going to make it all suddenly start working.

Therapy continues to brutalize my hands, wrists, and forearms, especially my right arm.  I think I am developing tendinitis in my right wrist, which also affects the tendons and ligaments in forearm.  It aches and hurts all the time.  I can’t pick things up at times.  I get excruciating pains shooting up my arm when I attempt to lift an object.  I’ve started wrapping an ace bandage around my wrist and a pressure strap on the upper forearm.  This seems to minimize the pain and pressure somewhat, but doesn’t alleviate the problem.  Overuse and over stressing the tendons and joints are causing the problem.  Unfortunately, being in a wheelchair causes you to have to rely on your arms and hands for every thing.  There is no getting around it.  It is a fact of life and just has to be dealt with.  The discomfort and pain will only go away if I can stop using my arms and hands for locomotion and that ain’t going to happen.  The rehab walking is the biggest culprit of the over-pressure, stress, and overuse of the hands and wrists.  If I choose to stop trying to walk, then maybe these symptoms will go away.  Not much of a decision is it?  Oh well, it sucks to be me at times.

Spring has sprung here in western Colorado.  All of the trees and shrubs are budding out.  Daytime temperatures are getting to the point you don’t need a coat or vest during the day.  T-shirts and shorts are the norm.  Mornings are still cool, but not cold.  Seems so contradictory to be wearing shorts and look east towards the mountains, where they’re still lay huddled under a deep blanket of snow.  I wonder what our Indian friends would think?  They would probably freeze, based on having experienced their winters.

Well, wish us luck and good fortune.  We have a long road ahead of us.  Peace be with you.

This update is for those who haven’t followed along with what we’ve posted on Facebook, to let you know what has transpired since we came home from India on February 17, 2010.  We have been home for about 10 days now.  The trip home from Delhi was its usual killer self, taking a toll on both of our souls and well-being.  Kathy’s mom, dad, and brother had stocked our frig so there would be food in the house and we wouldn’t need to go to the store to survive a couple of days.  My dad picked us up at the airport, ferried us home, and helped unload the luggage.  Thank God, we were running on empty by the time we reached Grand Junction.  It was a good deal colder here than in Delhi, but the air was so much cleaner and better smelling.  Delhi definitely has its unique aroma.  It took us several days to start feeling human and normal again.

The Sunday after getting back, about 11:00 am I had a fever just set in, no warning, no feeling bad, just bam!  It topped out at 102.5*F.  Left me in bed and feeling like crap all day.  Couldn’t rest because I felt so lousy.  My urine clouded up like someone poured milk in it.  This is the second trip in a row that I have become ill right after getting home from India.  Don’t know if it’s the stress, fatigue, adjustment of environments, food, water, or what?  My digestive tract has been totally screwed up since we arrived in India, never straightening out, even when I had Delhi-Belli.  Being home has made no difference.  Don’t know what to do, what to eat, nothing seems to help or straighten it out.

Was suppose to start therapy on Monday, but felt too bad.  Went to the doctor’s instead, leaving samples for testing.  E-coli was detected in my urine again.  Can’t believe this can keep turning up, especially considering have fastidious I am about cleanliness cathing and doing my program.  More high-powered antibiotics.  Wonderful!

I also went back to work at Cameo,(Xcel Energy) on Monday.  I had been dreading this because of all the problems we’ve had to deal, labor issue-wise, with Xcel Energy not allowing me to return to work and deleting me from all of its’ databases and access to the company networks.  They didn’t disappoint me.  They could not find “me”  to re-establish my company access until they looked in the “terminated employees” section.  Why Xcel deletes me from every thing is beyond my comprehension, or anyone else’s, especially when they knew exactly when I am returning to work?  I have spent the whole last week working on getting my computer/network access re-established or sitting on my butt waiting.  What a colossal waste of corporate assets and time.  I can’t imagine how much money it cost Xcel Energy to put me back in its’ system so I can do my job.  A job they are required, by law and contract, to keep available for me when I return from these leaves of absence.  It’s mind-boggling.

Since our return from India I have experience some increased muscle/nerve sensations in my butt, groin, and especially my knees and toes.  The sensations in my toes and knees gets really intense when I exercise and have therapy, especially when I use the Nustep recumbent ellipitical machine.  When trying to go to the bathroom, I can feel new muscle/nerve connections functioning in my groin and butt.  I still have no bladder or bowel sensation or control, and no touch sensation, hot or cold.  Hopefully, with time, there will be continued improvements.  All I can do is continue to work hard at the gym, in therapy, and here at home.  Time is my ally and my enemy.  

Just want to give a big thank you to all of our family, friends, and community.  Without your help and support these trips to India for stem cell treatments would not be possible and we would still be looking for some thing or some place to receive help.  We’ll have to see what the next few months bring in terms of new or increased sensations, possible function, and motor control before we make any plans for future or further treatments.  More later.

The veggies, flowers and fruit are beautiful – especially considering it’s ”winter”.

This bus is in the middle of a U-turn on these busy Delhi streets.

Sister Sunjita gets the last word in, for a change. 

If you did not see my update on Facebook, we made it back from Gautam Nagar on Thursday, February 11th, where I had a combination procedure; an epidural catheter and a lumbar puncture. Everything went fine, but I did have an unusual reaction to the stem cell injection on Thursday morning. Dr. Ashish had just finished injecting stem cells through the catheter when I felt strange fluttering sensations in my stomach. No sooner had I told Dr. Ashish about them when I experienced strong, painful spasms running in a band from the bottom of my rib cage, to the tops of my hips, and all the way around my body. This was definitely a first for me, as well as for Dr. Ashish. He had never witnessed this type of reaction before. These spasms would not subside. I was injected with muscle relaxants, then pain meds, and finally an anti-spasm drug. This did the trick. About 10 minutes later everything was back to normal. The entire episode lasted an hour.

Kathy was frightened; she told me all I did was traumatize her.  Dr. Ashish feels any reaction is good because this means some sensation is getting through, some connection being made.  Unfortunately, that was not all that happened there, I suffered burns from a hot-water bottle that had been given to me to help with the resulting soreness in my stomach muscles.   It was below my level of injury, I did not feel how hot it was against my skin (yes, it was wrapped in a towel and a pillowcase), and it just happened.  We did not know I was burned until later, discovering it when I was getting dressed to come home. It was really red and we felt it might just be like a sunburn but as the afternoon wore on, the blisters starting forming and it became obvious it was burned. The sisters have been taking good care of me and the ointment mixed with stem cells they apply has almost returned my stomach to normal – almost. The nurses have loved the irony of the situation, entertaining themselves with my embarrassment as they administer to my ailments, holding bandaging seminars with me as the victim. The doctors just shake their heads in wonderment, how can one person experience such problems coming to India? I tell them I am truly blessed.

Here is how our laundry gets done – by the side of the road.

One man’s abode is another man’s mansion . . . these two homes (photo above and photo below) are next door to each other.

As always, it was good to get back to Green Park to our showers, our beds, and our room. A development that I am not so happy about is I have suffered the last 3 days with Delhi-Belli, as it is referred to here. Neither Kathy nor I have slept well. Physio has been cut down because of my weakness and taking care of my digestive tract. It hasn’t made for the best of Valentine’s Days for my bride. There are bruises on both my legs from riding in tuk-tuk’s with the wheelchair on our laps.  Kathy, laughing deeply, says she will be taking me home bruised, battered, burned, with the squirts – AND with more sensation! It has sort of been a bad couple of days.  We are tired and ready to go home.

We are down to the last two days in India.  Monday, I get a deep muscular injection, lower lumber area, in the operating theater here at Green Park; then Tuesday we pack our room up and fly out of Delhi at midnight. This will be a super long day – getting up before 7:00 am Tuesday, leaving by plane just before midnight, flying for 14 to 16 hours to Newark, New Jersey – layover of 4 hours, flying for 3-4 hours to Denver – layover for 2+ hours, then the flight home for 1+ hours. That makes about 45 hours of being up before we can fall back into our bed in Grand Junction, Colorado. God, it’s going to be nice to be home! We pray there isn’t another storm to delay us in any way.

On a fun note, Harpa from Iceland has just arrived today for her second visit.  Harpa first contacted me a couple years ago off this blog and we have kept in communication since.  It was absolutely amazing to meet her in person.

All of our thanks goes out to Dr. Shroff & Dr. Ashish for the help and improved quality of life they have given to us. This extends as well to their great staffs. The care we have received since arriving here, has been professional, compassionate, fun-loving, and enthusiastic. We appreciate the fact that we can come to India for treatments, with stem cells, that are unavailable in the US and know they have done the best they can for us.

Go with God, bless our Indian friends and their families.

This family is crossing the Autobindo Marg, a very busy street.  Lots of people do this amazing feat every day and think nothing of it.  Men and women both put henna in their hair to turn it red – as you can see these women have.

A group of men are sitting by the road waiting for work (we think).  Some have no shoes or just one shoe.  They casually sit here on a bridge over a creek bed which smells of raw sewage to us.

Fancy balloons must be celebrating a birthday at this pretty home.

Rusty buys fruit from a vendor in the street at Green Park Market.

YUMMY – Mother Dairy sells “drumstick” ice cream cones just like home for 15 rupees each (about 31 cents – imagine)!

Cilistin is an assistant to Dr. Ashish in the operating theater and one of the kindest men in the world.  He and Rusty outside of NuTech MediWorld, Green Park.

Pragati arrived on his motorcycle with a walker that he made for therapy.

We had a wonderful surprise yesterday after yoga, George and Jody Briner from Grand Junction came to NuTech to visit us.  It was like a breath of fresh air!  George and Jody were with their daughter and son-in-law, Shannon and Michael, on a vacation-of-sorts touring around India site seeing.  Michael was born here in Delhi and he told them this would be more of an “experience” than a vacation and they all decided to make the trip.  They were talking with Jack and Anne Connolly in Grand Junction about this trip and they told them we were here also.  So, out of the blue, here they were and we shared a great visit.  Our thanks to Jack and Anne! 

We are also feeling happy that Dr. Geeta and Dr. Ashish decided to do another 2 1/2-day procedure plus include a second lumbar puncture.  We are all thinking Rusty may be close to some bladder sensation and if we just work a little harder, it will come.  So this quick blog is just to let everyone know we will be away from our computer for a few days.  Then this weekend is our last one here this trip.  I’ll have to talk Rusty into something fun before our final couple of days.  Until then, enjoy the photos. . .

Oh the fruit and veggies that roll down the street!

Who needs a pickup if you have friends?

 . . . Or employees?

. . . or a bicycle cart?

A typical Delhi morning:  foggy or damp and people burning fires.  Then it heats up to 80+- degrees F during the day.

Sunday February 7th about 4:00 PM and the workers were still going strong.

This girl is a “trash-picker” and we see her every morning at work on the street.  She carries the loads on her head.

Homes located on the side of a busy street.

Yummy, nutritional grazing — not!

These flowers are shavings from wood and made into very pretty arrangements.  Popular for home decor here in India.

Rusty balancing on the ball in physio - very difficult for anyone, especially if it you are paralyzed from the waist down.

 Ball balancing and raising one hand at a time.

Shivani watches Rusty very closely to make sure he does not topple.

Carrots for dinner?

Some of the many “homes” located right on the street. 

Interesting sites on the drive to Gautam Nagar.

This is the front of Gautam Nagar Hospital where Todd and Adam from Australia wait for our taxi to take them back to Green Park.

Apartment housing on the side of the hospital.

This is a side view of Gautam Nagar Hospital.

Yesterday, we finally got through with our 3-day procedure at Gautam Nagar and were released to return to NuTech at Green Park.  I haven’t experienced any “radical” changes from stem cell injections, but the nerve sensations in my muscles are definitely stronger and my limbs feel heavier - like there is more substance to them.  An odd thing did happen, on the last set of injections my left eye, cheek, chin and nose got very tingly.  Then, the sensation went to the top of my head and my right cheek.  Dr. Ashish said he’d never had anyone experience these sensations.  After the injections were over my eyesight got kind of waverly and swimming.  The entire sequence lasted probably 20 minutes.  Pretty weird.  The hardest thing, well really the only thing hard about leaving Gautam Nagar, is knowing you won’t be getting any more omelets for breakfast.  Damn, they sure are tasty and nice to wake up to.

We signed out, loaded my butt in the taxi, and headed home.  Travelling through the market we were gauking at all of the different stores, merchants and their wares and the funky, cool alleys that are dark and mysterious.  Kathy was trying to get a couple of pictures of goat carcasses hanging in a shop window, when I looked out my window and there is an elephant’s hind leg and butt a foot from my face.  My bride has been gaagaa over getting close elephant pictures and here one was – she was in heaven.  Her camera was in overdrive clicking pics.  After we got on the main drag and looped back towards NuTech, here he came trudging along, right along side every kind of vehicle imaginable.  No worries.  When we unloaded at the hospital the elephant came striding down the road and passed right in front of us, heading somewhere to toil for his masters, riding atop him.  His trunk, face, and jowls had an awesome fluorescent orange design painted on them.  Pretty cool encounter; Kathy was delighted and pleased.

This elephant is up close and personal – look at how calm his eyes are.

A working elephant and his handlers heading to a job across town.

Shocked us at how fast this ambling elephant got throught the busy traffic.

After physio and lunch on Saturday, Kathy drug me out shopping.  I tried to tell her I didn’t travel half way around the world to shop, I came only for the stem cells, but it did no good.  We hailed a tut-tut and took off for Dilli Haat, an open air market specializing in crafts and textiles.  Kathy shopped to her heart’s content, picking up gifts and souvenirs.  Indian fabrics are all so vivid and colorful.  Combinations of some (which you’d never contemplate putting together) are strikingly beautiful and make amazing garmets, shawls, saris, etc.  Finally I convinced her to let me go back to NuTech, so we hopped into another tut-tut and came home.  I love watching people as we load me into and out of a tut-tut, never ceases to amaze me how interesting we are to others and vise-versa.

This man is weaving a rug at the market.

This little girl wants a toy so bad – Mom is negotiating the price.

Women loading gravel into sacks to carry on their heads.

You don’t dare cross the center line in this street on the way to Gautum Nagar Hospital.

We survived our first procedure over at Gautam Nagar, on 1/28 – 1/29.  Getting bent in half for 45 minutes so Dr. Ashish can locate where he wants to inject, then perform the injection, is a little tough on my non-pliable body.  After the injection was over it was back to our room where I had to lay on my back for hours, with the foot of the bed raised to a 2-brick level.  Finally at 8:00 pm they removed one brick and I could turn onto my side.  It felt like someone had super glued by lower back and hips, God I was stiff.  My body spasmed quite a bit from the procedure.  Hopefully there will be some progress and improvements in function from the procedure.  I slept OK, even with all of the back pain and the nurses coming in to check my IV.

At 6:30 am my body was wide awake, raring to go.  Dr. Ashish showed up very early, questioning me on my response to the procedure and whether or not I had a headache.  I felt alright except my back and ribs hurt to breathe from lying like I did for the extended time.  Since we had no complications he cleared us to head back to NuTech after breakfast.  We had ordered omelets for breakfast from their “canteen”.  This is a highlight for us, a real breakfast with eggs.  The sister told us we had “5 minutes” before the taxi was to be there for the trip back to NuTech.  I wasn’t even dressed and Kathy hadn’t done much in the way of packing or getting ready to leave.  We got around, went downstairs, signed out, loaded my butt in the taxi, and came home.  It is always an adventure to see how much the road construction has changed since our first trip in November 2007.  To us it looks as though the progress is stagnant, no changes.  This construction is on the new subway system being built from downtown Delhi out to the airport for the Commonwealth Games in October 2010.  I don’t think they are going to make it, but it’s interesting to see.

The man in white shirt is a shoe-repairman with a customer.  This man conveniently lives just above his shop — in the tree!

Kathy has been getting sicker with a respiratory problem brought on by Delhi’s high pollution and wet foggy weather.  She coughs and sounds like her lungs are filling up with fluids.  The doctor at Gautam gave her some medicine.  Her cough and congestion has worsened since we returned from Gautam.  Dr. Sudeep prescribed different antibiotics, cough medicine, and use of a nebulizer.  She coughs so much, nothing seems to be helping.  Her sinuses and head are very painful.  Something better start working and soon, she can’t keep going like this. 

Saturday was just a half day of physio, the therapists only work 1/2 a day.  Sunday is quiet around here.  Everybody sleeps in, if possible.  Some take day trips to see the sights and get something to eat.  I had an IV infusion (an IV w/syringe of stem cells injected into it) this morning.  Kathy is still battling her respiratory infection.  If she feels better this afternoon, we’ll go for a walk and pick up some fruit at the market.  Our diet has been too heavy with carbohydrates and starches, not enough fiber and roughage/salads.  My system is plugged up.  I’ve never had trouble here before with regularity.  It’s the first day it hasn’t been foggy.  Visibility is about a mile and the sky is finally blue.  Going to order some take-out/delivery food for dinner tonight.  Not sure what it will be, but it will be different than what we have been eating.

There are so many questions we have . . . what some people are doing, what we are eating, what people are saying?  It is interesting to be outside of your element.

Hard to believe we have already been here in India for a week, 25% of our allotted time.  The clinic is pretty slow, not a lot of patients, but all of them are English speaking,(Brits, Aussies, & US).  I’ve already had 2 low back, intramuscular injections of stem cells.  “Procedures”, they call them.  These are of a much greater volumetric measure of stem cells than the intramuscular injections we receive in our shoulders twice a day.  I would be perfectly content to be hooked up and have stem cells pumped into my body 24/7, but know this is not feasible.  It’s tough to travel all the way here and not get more, but there is a protocol for their program and we respect that, knowing they are doing what they can for us and believe is right for our bodies.

Still struggling with lack of late night/early morning sleep.  So far medication hasn’t helped solve the problem.  Never had problems with jet-lag coming to India, just with it going home.  It usually kicks my butt good then, taking me days to recover.  Will hope that my system straightens itself out soon as this impacts Kathy’s rest too with her sleeping on the floor next to my bed, I can’t believe how much my body is spasming and fidgeting.  It’s like you turn on a light switch, my body comes alive with its cravings for pain meds, caffeine, or whatever it is seems to be needing.  It’s a small living area we share, so every action has consequences for the other person.  I think it will work itself out, otherwise my bride is going to wring my neck.  Time will tell.

Tomorrow we will be going to Gautam Nagar,(the other older hospital), for an epidural injection into my spine.  We will be spending a night there so they can closely monitor any adverse reactions my body might have.  Sometimes extreme headaches are associated with these procedures.  Hopefully that won’t be the case, but I have suffered through these previously on other trips.  My body seems be having increased sensations in my legs, groin, buttocks, feet, and toes.  The nerve/muscle feelings have increased in strength and intensity from the two previous procedures.  We won’t have Internet access over there so we won’t be in touch with the “outside world” for a couple of days. We are posting this so people won’t worry when they don’t hear from us the next couple of days.  If there are a bunch of grammatical mistakes in this, no worries.  It’s just me being me.  Bye.