I’ve neglected writing a post recently because there really isn’t a lot happening in my life as far as progress from the stem cell treatments and gaining any improved function in my body.  I know I get as tried of complaining of the pain that is coursing through my as the people who read about it, so why bother?  Basically, my life has settled into a routine of struggling to get out of bed each morning, getting ready and going to work, leaving work to go to the gym to workout or to have PT, going home to crash to recover enough energy and motivation to get through the evening, showering and going to bed.  The whole routine repeats itself every single day.  Pretty much a drag.

I have not seen or experienced any changes in my body’s response to the stem cells or from the repetitious drudgery I subject my body to.  Other than dealing with increasing pain I am not getting any other signs of progress.  They say pain is a sensation.  A sign of things reconnecting.  But if that is all that is forthcoming, then I can live without this kind of progress.  This is not the improved ”quality of life” I was hoping for , this is hell.  I don’t want to sound bitter or ungrateful about the things that have transpired in my life since I first received stem cell treatments in November of 2007.  I didn’t start down this road with unrealistic expectations.  I knew that I could experience unpleasant sensations as well as possibly regain function and sensation in my lower extremities.  To me it was worth the chance to try.  If you don’t try, how can you have hope?  Without hope what do you have?  Nothing.  Emptiness.  All I can say, is that it sucks to be me right now.  Will that change, who knows?  All I can do is take it one day at a time and hope.  Only time will tell if my prayers will be answered or not, but the reality of the situation is the odds are not in my favor.

In therapy we are still working with a bariatrics walker, one with cradles for my forearms.  While this does relieve the pressure on my wrists and forearms, and helps minimize the tendinitis in my right wrist, it is excruciatingly hard to walk with.  I can’t just shift my weight to each side (pushing down with the associated arm to unload the opposite leg) and articulate my hip and leg forward like I can with a straight, normal walker.  Everything has to be done with the stomach, back, shoulder, and upper arm muscles.  This is doubly hard, and sucks the life and energy from me.  I have never sweat so hard in my life, even when I use to run in the Summer heat.  My soul drips from my body one drip at a time, leaving a trail to mark my passage of pain and suffering.  We have been working on my wrist for 6 weeks now, trying to get it better.  Tracy, my PT, has utilized; electric stimulation, heat, cold, massage, splits, and wraps.  Nothing seems to improve the pain and discomfort, nor is it getting any better to grip and pick things up.  I just can’t stop using it, giving it time to heal.  I live my life in a wheelchair, utilizing my arms and hands as my legs.  There is no getting around it.  I have 2 doctors’ appointments this week and next.  I’m hoping to get the wrist X-rayed to see if there is any bone chips floating around causing the non-ending pain and inability to use it normally without cringing and over-compensating with my left arm/hand.  There has to be an explanation as to why it won’t heal.  This impacts my other gym workouts too, as well as my daily living.  I have to really pay attention to what weight-lifting I do, to minimize the compression of the joint.  That seems to impact it the most; weight-bearing, torquing it, and compression.  It’s bad enough not having my legs to walk with, but now I’m being reduced to an one-armed man.

As for the rest of my life, what life?  I have no life.  It’s been too damn hot to go outside and exercise or enjoy.  If I go rolling my wrist hurts.  If I do nothing, my back hurts from the inactivity from not stretching the muscles.  We have gone fishing several times, but even this is work.  Every time we go, I pee my pants from the exertion and bending associated with fishing.  The only redeeming aspect of the activity is that it is cooler in the mountains and the scenery is much prettier, but eventually you have to return to the heat and grind of the valley that we live in.

As of January 1, 2011 I will be out of a job.  Xcel Energy is closing the power plant that I work in for purely political reasons.  They made an agreement with the governor of our state to cut their “carbon footprint” by 10%  by closing our plant.  The consumers don’t realize that Xcel was just going to provide power from another source that emits the same amount, if not more carbon footprint than our plant.  Plus, they made an agreement to convert some of their coal plants to burn natural gas in order to reduce the CO2 emissions from burning coal.  Natural gas costs 3 times as much to produce electricity as does coal and Xcel can pass the fuel costs directly onto its customers dollar-for-dollar, adding a “transportation fee” to the bill because the gas travels through their pipelines.  Incredible!  Anyway, I will have worked 33 years for this company and their won’t make an effort to find employment for me in another location, close to Grand Junction.  Being a Union member, I have put in for transfers to another Xcel Energy facility in Junction, but because I am disabled and only work 4 hrs/day, Xcel doesn’t want to or have to accommodate me in any way, in any position.  Work is what keeps me going.  Without work, I have no direction in my life, no reason to get out of bed and face another day, no prospect to challenge me and giving my life meaning, no life period  I don’t know what I would do with myself if I couldn’t got to work each day.  It was what got me through rehab when I got hurt in 1998.  I focused on developing whatever functions and skills I needed in order to return to work.  Proving to the world, and myself, that I could still be a functioning member of society and provide for my family.  Now, my world has coming crashing down around me.  As I said, it sucks to be me right now.  Well, enough feeling sorry for myself.  You don’t want to read this crap anyway.  So, until the next time when I can summon up enough material to put down on paper and bore everyone with, goodbye.

Posted on July 30th, 2010 by admin
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The past few weeks have been a blur.  My life has been spinning out of control and it is as if I am but a spectator as it flashes by me.   It seems as though I have no control or input into the decisions are being made concerning my life, but ultimately have to live with the consequences of them.  I feel like it’s a dream or movie that I’m seeing inside of my head, but that I have  no idea as to what I’m suppose to do at any given moment.  I know there is something there, just outside the reach of my subconscious, but I can’t get my brain to engage to give me the information for dealing with the circumstances or events as they transpire.  Hopefully it is just a phase I am having to deal with and every thing will change and be OK when I wake up.

Over the last couple of months I have developed Tendinitis in my right wrist.  This is from the overuse and over-stressing of the joint, along with the associated tendons, ligaments, and muscles.  It has become problematic to pick things up, lift weights, have physical-therapy, or any thing else which means utilizing the wrist to accomplish.  That pretty much includes my entire life of living in the chair.  Sleep has even become elusive, with the wrist aching throughout the night.  It’s almost like having Carpal-Tunnel Syndrome all over again, but I know I had that taken care of in 1999.  My doctor sent me to an Occupational Therapist/Hand Specialist to see what could be done to help me.  It’s not like I can just stop living so the wrist gets a chance to heal.  That just ain’t going to happen.  The Hand Specialist designed a splint to immobilize and support the wrist while I sleep, hoping I can at least take some of the strain off of it during the night.  When I get up in the mornings my wrist is so weak from the splint doing all of the work and as soon as I start using it the pain comes back.  In conjunction, my Physical Therapist ordered a new bariatrics walker, which will have forearm braces to rest my forearms on so all of my weight doesn’t rest on the wrists while I am up walking.  It will be interesting to experiment with it to see if it will relieve the pressure and give my wrist a reprieve so it can heal.  I have had to cut back on my wheelchair rolling, weight lifting, standing in the parallel bars, and exercises that cause my wrists to bear weight because I can’t deal with the pain and discomfort.  They have also utilized electric stimulation, heat packs, ultrasound, massage, and ice to give me some relief.  So, we’ll just have to see how things progress and hopefully I’ll get back to doing every thing I use to.

I have not really experienced much, if any, changes since my last post.  The sensations in my feet have definitely gotten stronger, almost aching at times, but that is about the extent of the changes I have felt in the past month plus.  Still no bladder or bowel sensation, and with that no real control of my bodily functions.

We continue to work on my walking gait and form.  I have seen some improvement there, with the ability to get my heavier right leg to articulate forward and take a step.  I’m still having to do a much larger, more powerful weight shift to the left side (than I do for a left-footed step) in order to accomplish this.  But it seems to be easier and with a smoother motion.  The only real hold-back, besides the pain in my wrist, has still been my inability to transition my hips forward so the weight is distributed down through and supported by my legs.  I don’t know if I will ever be able to accomplish this as my spinal fusion is so restrictive to this forward hip-thrust.  As of now, locomotion outside of the gym or home environment is non-existent.  It takes way too much effort and I become too fatigued after a relative short distance of walking upright.  Therefore, day-to-day movements are still done in my chair.  I am still working on my stamina and strength, but those will only carry me so far.  The dynamics of walking are much harder than anyone anticipated.  Unless the muscles in my legs start to respond to the inputs from my brain and nerves and I begin to see some motor control of them, I don’t see much hope for future progress.  If I could develop the sensations of knowing when I needed to go to the bathroom, I would be content and consider this experiment a success.  Only more time will tell.  Later.

Posted on May 21st, 2010 by admin
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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.

Posted on April 12th, 2010 by admin
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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.

Posted on February 28th, 2010 by admin
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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)!

Posted on February 14th, 2010 by admin
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