I still have people stop me and ask if I was the guy who underwent the stem cell treatments in India that they remember reading about.  They are amazed that we had done this, travelled to the other side of the world, immersed ourselves into another culture, and undergone the stem cell treatment program offered by Dr. Shroff.  If I didn’t have the pictures and memories from our four trips to Delhi, I would have a hard time believing it also.  It all seems so long ago that we met the people in Delhi and shared that special time in our lives.  So many are the faces of the people who were there.  People undergoing the same, or different treatments for the afflictions affecting each of us, the people whose duty it was to care for us and to help us try to improve our quality of life through stem cell therapy.  To these people, we have immense gratitude and caring.

There is so much information about stem cell research, developments, treatments, programs, etc., out there for people to read about these amazing cells and what they are actually doing to improve people’s lives.  We attended a program on the developments the University of Colorado was doing with their research partners over in Denver, CO.  It boggled my mind that they could take a biopsy of someone skin, put that skin in a solution of stem cells and grow enough skin to cover that entire person’s body in a little over 3 weeks.  Think  of the potential for burn victims to have their own skin for skin grafts, with no worries of their body rejecting the graft.  They can take a biopsy of someone’s cornea and grow a whole new cornea for that individual, restoring their sight  Again, no rejection worries.  Another application was to grow bronchial tubes for people suffering numerous afflictions or injuries, restoring their ability to breathe and lead a normal life.  Utterly amazing, and this was a couple of years ago.  Think what these dedicated researchers and doctors have come up with since.

We had one clinical study being done with embryonic stem cells, by a California firm, Geron, that stopped before much was ever accomplished.  Funding and their inability to procure patients who were stable enough from their injuries within the timeframe specified by the study.  This was a year or 2 ago, so no real usable data or developments to come out of this effort.  The latest clinical study being done on humans, here in the US, was by a company out of Florida.  I’m no sure if this was the Miami Project or what.  They are utilizing Schwann cells in their study.  Unfortunately, it will be years before we see any developments from this study.  There are things being done with stem cells elsewhere on the planet.  It is just a matter of time before progress is made and people will have available to them, multiple options for stem cell treatments.  So I am hopeful that mankind will make a multitude of new break throughs in the development and use of stem cells.  Be they; adult cells, skin cells, embryonic cells, heart cells, or any other type present in the human body.  Yes, we have a lot to be thankful and hopeful for.  Pray that we see positive developments in the line of stem cell treatments.

Thank you to everyone for sharing in this adventure.  It has been quite the ride.  Peace be with all of you and glory be to our Savior!

Speaking of hunting season, I did fill my male mule deer permit with my muzzle loader a couple of weekends ago. It was great to get out and get some meat to make into sausage and have some steaks for the Winter. I still have a cow elk permit to fill, but have until the end of January 2012 to hunt so it shouldn’t be a problem getting it done. Kathy and I have been fishing several times up on the Grand Mesa (local mtn) and had good times everytime we got out, catching trout on each trip. The Fall colors are just starting to change in the high country, so it is just going to get more beautiful in the mountains over the next several weeks. We have already gotten some snow in the high mountains, so Winter isn’t that far away. I’m glad it has colled off as it is too hot in the Summer to get outside and do much, especially in a wheelchair.

As far as my body is concerned, I haven’t felt well for the past 4-5 months. it’s like I have no energy and I keep having these intermittent fevers that come on out of nowhere. The fevers only last 2-3 hours, but some times they are severe enough that I shake like a dog in my upper body. I haven’t had a UTI since February when my urologist put me on a use-once-then-throw way catheter program. Before then, I was getting UTI’s one after another. So, at least I’m not having to deal with that. My pain doctor ran some tests, but couldn’t find anything wrong. He then referred me to an infectious diseases’ doctor, who I just went to last week. This new doctor is running a battery of blood tests to see if there is spome thing in my blood. He is focusing on the possibility of me picking some thing up in our travels to India, namely malaria, HIV, and TB. He said I wasn’t tested for TB in the past and India is a place where TB is prevelant in the population. In some regards I hope they find some thing so that I can start felling better, but I am also concerned that they might find some thing too. It’s a catch-22 type of thing. We’ll just have to see what happens.

In the past couple of months my body seems to have awaken even more. It is tough to sleep at night as my body is experiencing a great deal of increased spasticity, especially at night. I also am “feeling” my feet, legs, ankles, thighs buttocks, and groin on a more continual basis. It’s so wierd to “feel” body parts lying there in bed when before there was no sensation or feelings in them previously. I was experimenting in bed one night and I could bend my right knee as I focused all of my attention on doing so. 3 straight times I bent my knee, then I couldn’t get it to happen again. When I continued trying, my left knee started bending when I tried to bend the right one. Strange, huh? I could never get the left knee to bend on command. Unfortunately, it seems like it was a one-time-deal. I haven’t been able to replacant it again, no matter how hard I tried. I will continue to try and see what develops, if any thing.

People continue to write and contact me about our experiences in India, asking if it would be the right thing for them to pursue too. This is the hardest thing to deal with as everyone is unique in their injury or disease. What’s right for some may not be right for others. It is a tough decision to advise others. I try to be honest, telling them no one can make these decisions for them and to do what they feel is right for themselves, not for others. I know in my heart that we will not be going back to India for further treatments. When stem cell reserachers learn to program stem cells to become the specific types of cells their patients need, then the real progrees in the treatment of injuries and diseases will skyrocket and the world will will see the true potential of stem cells. Until that time, I will wait and watch to see what develops. Deciding then, when I feel the time is right, to further pursue stem cell therapy.

Well, that’s about it from my corner of the world. I will continue to update this blog periodically, when I see further developments in my body or just to say hi. Peace be with all of you. Never give-up hope, for without hope we are but empty shells without life.

The really big news is our daughter Megan (our oldest daughter) gave birth to a baby boy on April 20, 2011, making us officially grandparents.  She called at 04:30 that morning saying her water had broken and she and her husband Jeff, were headed to the hospital.  Kathy and I got around and drove the 250 miles to Denver, CO, making it in time her to start pushing and deliver the baby.  Mom and baby came through the ordeal in flying colors.  What an experience when your own children start having babies of their own, it really illustrates how the circle of life continues to evolve and expand.  And how no matter how hard we try to slow down the aging process, we all continue to get older.  But, we are truly blessed with this new addition to our family.  Thank you God!

As I stated earlier I was laid off from my job at the power plant on 1/14/2011 after 33 years of employment there.  Since then I have submitted numerous job applications at a variety of businesses and government facilities, all with the same results, no one is hiring.  Being a paraplegic makes it doubly difficult when attempting to procure a position with anyone.  Employers don’t want a disabled individual as an employee because they have to accommodate us with facilities that allow us to take care of our personal needs, such as going to the bathroom.  The law says employers have to look at our applications and give us the same opportunities for employment as regular  individuals, but that is all.  In reality they aren’t going to hire us when they can hire an able-bodied person, with no disability or special needs, to fill their positions.  Who can blame them?  I wish the reality of the situation were different, but I am a realist and understand life isn’t fair.  I just have to deal with it and try the best I can, and continue moving forward each day.  

I have not seen any further developments from my previous stem cell treatments.  I still have a lot of deep-muscle nerve sensations firing off in my lower body, but there have been no motor functions develop from these sensations.  The pressure ulcer that developed on my left heel in November 2010 finally healed over in the first part of April 2011.  It took over 4 1/2 months for it to heal.  I haven’t started walking with my leg braces yet as the skin and scar tissue are extremely delicate and I am afraid to cause it to reopen again.  My braces were the cause of the initial skin breakdown.  So, no physical therapy.  I have continued to go to the gym and left weights, but this isn’t doing any thing to help possibly re-establish any neuro-pathway connections.  I feel without the repetitive motions established in therapy and constantly working at improving my walking gait through walking with leg braces, there is little hope in re-establishing neuro-pathways that were destroyed in my accident.  But, we have to have hope.  With that in mind, hopefully I can begin again my therapy and see where it leads. 

As far as travelling to India for further stem cell treatments, I feel we will have to wait for new developments from the ongoing stem cell research being conducted around the world.  Until researchers can learn how to program stem cells into becoming specific types of cells, specifically the nerve cells my body needs, I don’t think there is much hope of regaining lost function by arbitrarily injecting stem cells into my body and hoping they transform into the nerve cells that can help me.  I pray for all of us who need this type of help to give us a shot at renewing our lives and help us move forward into the future. 

As I have stated several times over the past 3 1/2 years, we started this journey with the hope and conviction that we might experience some positive results from undergoing stem cell treatments in India.  The reality of the situation is that we did see some results in the awaking of some deep muscle/nerve sensations.  Unfortunately, none of those sensations have developed into motor function.  That’s not to say that someday there might not be a miraculous change and suddenly I “feel” my lower body, and some muscles begin to function with the impulses from my brain.  We just have to continue to have hope and see what happens.

So, I will continue to update this blog periodically with the happenings in my life.  I truly appreciate the support our family, friends, and complete strangers have shown us during this time.  Thank you for all you have done and given to allow us to experience this amazing journey.  Take care and God bless.  Peace be with you.

In my last post I wrote about the problems I am experiencing from a pressure-sore my walking braces caused on my left heel. Unfortunately, I am still dealing with this, it just won’t heal. The wound nurse had finally quit trussing me up in 3-layers of compression bandages because the sore healed over, but yesterday I noticed a skin-flap had torn loose and was bleeding again. Don’t know what I did to cause it do tear, but now any prospects of walking soon has been pushed back at least a couple more weeks. The last time I walked was the week before Thanksgiving, more than 10 weeks ago. I had told my therapist just last week that it looked like we would be able to resume therapy this next week. Bummer. That new skin is so delicate that it damages very easily. Bummer. Just have to keep moving forward even though my body doesn’t want to keep up with the efforts from my brain. I continue to lift weights and work out. I know I must keep my body in as good of shape as possible. Working out occupies my mind as well as my body. It gives focus to my soul. Above all else, I must remain active and keep my life moving forward, no looking back, That is counter-productive and depressing. I must avoid that at all costs. It will bring me down and with it every thing I have worked so hard to accomplish since I was injured.

I also mentioned that I was losing my job at the power plant on January 14, 2011. Well, that day has come and gone. I am now a member of the ranks of the unemployed. For 33 years I had a reason to get out of bed, get around and get ready, and go to work. Now I spend my days wandering the Internet and publications looking at job postings and applying for jobs I might be qualified to do. We are in a tough economy, with a lot of people looking for jobs. Being middle-aged (53) and disabled limits the opportunities for employment and I am competing against able-bodied, better educated, and younger job seekers. If I am unable to secure a job in the next month or so, I will volunteer in some capacity some where. There are a lot of areas in our community that need volunteers and at least I will feel like I am contributing somehow and possibly helping others. Eventually, some thing will turn up and I will rejoin the ranks of the employed.

Not much to report as far as progress with my body and it’s response to the last round of stem cell treatments we had in January-February 2010. I continue to experience new, subtle nerve and deep muscle sensations in my lower body, but there has still been no transition to any motor control of the muscles at all. Pain has been my constant companion for 12+ years. unfortunately the level of that pain has increased each year since we started receiving stem cells. I understand that pain is a sensation and feeling pain from areas I never experienced pain from before is progress, but I don’t think I want any more increases in pain to occur. Making the decision to undergo stem cell therapy included acknowledging there might be downsides to the treatments, but unless you’re willing to take a chance there is no way to know for sure. Overall, our experience has been an eye-opener for us. We journeyed half way around the world, partook in a society we knew next to nothing about, met some wonder people, and were a part of an exciting new treatment option for people with spinal cord injuries. I wouldn’t have changed a thing if I had a chance to do it all over again.

Life is about taking chances. I took a chance and wound up in a wheelchair. We took another chance for the opportunity to possibly get out of that wheelchair, it just didn’t turn out as we had hoped. When we traveled to India the first time, we didn’t go there with delusional expectations that I might some day walk again, we went with the hope that my body might reconnect some of its neuro-pathways and that I might regain some sensation in my bladder so that I would know when I needed to pee. This has been our everlasting hope. If this happened we would be ecstatic and any thing else gained would be icing on the cake. So to speak. We still hold onto this hope. One day it might happen, who is to say. But, we hold onto the belief that someday some thing miraculous could happen. Without hope, there is nothing but emptiness. I refuse to live my life without hope.

Peace.

There hasn’t been much to report since my last post in regards to changes in my physical abilities.  I still have no motor control of any of my muscles below my level of injury, the 10th thoracic vertebrae.  I do continue to experience some nerve sensory changes in my legs(quads, hamstrings, calves, knees), feet(ankles & toes), buttocks, groin, hip-joints, lower abdominal, and lower back(hips).  The nerves are telling my brain that the muscles, tendons, and ligaments in these areas are sensing movement when these associated areas are manipulated and moved.  The tingling, or buzzing sensations in the feet are a constant and increase when I exercise and move.  It is such an odd feeling to experience these sensory inputs into my neurological system.  I can’t relate to them as I never dealt with any of these types of inputs when I was able to walk, they are totally alien to my memories.  Therefore, it is impossible to explain them to others as there is no basis for comparison to verbalize their sensory inputs.  Weird, huh?

Just before Thanksgiving, I developed a pressure sore on my left heel.  I think the foot-bed of my walking braces rubbed on my heel causing the skin to breakdown, resulting in an ulcer.  Since then we had made numerous trips to the doctor’s office, the ER, and wound-clinic.  The wound became infected with 2 types of staph bacteria, MRSA and Proteus.  How I got 2-staph infections is beyond me.  What are the odds of that occurring?  Anyway, I was on a regimen of both oral andIV transfused antibiotics to combat the infection.  The drugs did their job as the infection is no longer prevalent in my foot.  Unfortunately, we can’t seem to get the wound to heal.  It has been almost a month since this first occurred, the one side of my heel is still dripping blood when the compression-bandages are removed.  Being a paraplegic causes my lower body to suffer from lack of circulation as my leg muscles don’t pump my blood back to the lungs as a healthy person’s body does.  This lack of circulation is inhibiting the healing process.  It is going to take a long process to get this pressure-sore to heal.  In the meantime, there is no PT, not walking, and I’ve had to greatly modify my workouts at the gym to minimize the impact on my foot.  Too bad we can’t get some stem cells to treat my wound.  When we were in India this past February, they treated my 2nd-degree burned stomach with stem cells added to a salve.  It was amazing how fast those burns healed.  In 2 days all but one of the blisters were gone.  It was simply incredible.  All of this has resulted in a great holiday season so far.

Due to the fact I had MRSA, our daughter Megan (who had driven over from Denver to spread Thanksgiving with us) got scared and didn’t want to be around because of her pregnancy, so she went back home.  We notified Kathy’s parents of the situation and because Kathy’s dad is in remission from his Non-Hodgkin’s Lymphoma, they choose to not to come to Thanksgiving either, as did my mom.  All because of the MRSA.   Needless to say this has been an ordeal for Kathy and I to deal with that is beyond our capability to comprehend.  Researching MRSA we learned that 2% of the general population carries MRSA at all times and 7% of health-care workers also carry the bacteria.  Scary.

On January 14, 2011 I lose my job with Xcel Energy.  After 33 years with this company they are closing the power plant that I have spent most of my adult life working in.  All of the other operators and maintenance personnel are transferring to plants on the eastern slope of Colorado, but because I am on long-term disability Xcel does not want to retain me in any capacity, any where.  I have put 11 transfers in to the local Xcel operation center in Grand Junction, but there are no positions that I qualify for because of my disability.  I have also applied for numerous jobs with the federal government as they seem to be the only ones with funds to hire anyone.  With the expansion of the federal government there are several jobs available.  Once again, the fact that I’m a 53 year old disabled individual works against me.  No one wants to hire a disabled person when they can hire an able-bodied person.  So, once I have been terminated from my job I will go on full-time LTD, with Xcel Energy footing the bill for my benefits.  Xcel will probably force me to file for a Social Security Disability as this will offset the amount they must pay me per their plan and my union’s collective bargaining agreement.  We will start the new year off with a great deal of uncertainty and strife.  I will continue to workout, get PT, and actively seek employment in the upcoming year.  Only time will tell what my destiny has in store for me.

Kathy and I want to wish everyone a very Merry Chritmas and a Joyous New Years!  May your lives be fruitful, happy, and content.  Peace.

Rusty

My body seems to aging and falling apart faster than I had ever anticipated, or faster than I can rehab and fix it.  I have been having really bad wrist tendinitis and neck pains the past several months.  My rehab doctor authorized a couple of MRIs to see if we could find the cause of my discomfort.  The hospital shot my elbow and neck instead of my wrist, but it was beneficial.  I have a torn Medial Collateral Tendon in my forearm and a partially torn Bicep Tendon, along with degenerative joint disease (meaning I’m aging).  My neck has 2 bulging discs.  One at C-4 to C-5 and the other at C-5 to C-6 cervical vertebrae.  This goes along with degenerative joint disease too,  foraminal stenosis (narrowing of the openings where the nerve root exists the spinal canal), and last but not least, osteo-arthritis.  At this rate my joints should wear out before my organs can go to hell.  Such is life.

I have also been dealing with a substantial increase in spasticity.  My legs feel alive most of the time, along with my knees and feet, tingling and buzzing, as well as being able to feel the tendons, ligaments, and muscles moving when manipulated.  Unfortunately, the spasms are causing sleep deprivation as my body never shuts down.  I could drug my body and restrict the spams from occurring, but that would be counterproductive as we want the neuro-pathways to grow and the spasms show there has been growth happening.  The other problem with the spasms is that at times during PT (physical therapy) the spasms get so bad and powerful that I cannot stand and try to walk.  My leg(s) keep trying to shoot out from under me and won’t support my weight or attempts at locomotion.  Not only do the spasms inhibit movement, but they wear me out while trying to support myself upright on the walker.  We’ll just have to see what happens and hope this is just a phase my body is moving through.

On to more enjoyable aspects of life.  I went elk hunting in September with my muzzle loader.  After finally procuring a place to hunt, my brother-in-law, Kirk, and I set my blind up and staked out my elk decoy.  On the second afternoon of hunting, a couple of cow elk came to the waterhole we were set up on.  Due to the warm temperatures the animals need water during the day, so we used this aspect of behavior survival to our advantage.  They were very curious about my decoy and while they were totally focused on it,  I was able to cleanly harvest one of the elk.  It was pretty awesome, 1 shot – 1 elk.  Kirk and I quartered her up, loaded up the meat, which I took the meat to the game processor after cooling it in a friend’s fruit cooler for a couple of days.  Yum, elk steaks, sausage, and hamburger.  I didn’t get to go deer or antelope hunting as I didn’t draw a permit, but the guy who manages the ranch I hunted on said I might be able to get a landowner voucher from him for later on.  That would be cool to get to go out again and commune with nature some more.  I love to get out and be a part of nature’s seasonal evolution.  The Fall has been very warm here.  This has impacted the change of seasons, from Summer to Fall.  With the warm there has been an absence of moisture, so the Fall colors didn’t change when they normally would have.  The color change was probably 2-3 weeks behind normal.  Regardless, the colors were spectacular when they did change.  Even on our flight the other day, there were still clumps of aspen and oak brush going through their vibrant color display changing to shades of yellows, oranges, and reds.  The Colorado high country is beautiful in the fall.  Wish everyone could experience it.

Yesterday, I got to go flying with one of my high school classmates.  Kirk (I know a lot of Kirk’s) has his own plane and pilot’s license, so he called and invited me to go flying.  We left Grand Junction and flew north, up past DeBeque over the Bookcliffs, east towards Parachute, north up towards Rio Blanco, across the Hogbacks onto the Flat Tops.  We cruised up by Blair Mtn. & Lake, south towards Elk Creek, out of the mountains crossing the Interstate heading south towards the Divide Creek(s) drainage, over the Silt Divide, over the top of Grand Mesa, dropping down on the Cedaredge/Hotchkiss side, then swinging back north to Grand Junction.  We were up for a little over 2 hours.  It was spectacular!  Wierd though, as I’m afraid of heights, but I am able to fly in a little plane like that and have no problems.  Another of life’s mysteries as far as my screwed up neurological system goes.  Thank God I can enjoy things like this.  There isn’t a lot of things that I can find complete joy in doing.

Well, until next time.  Be safe and go with God.  Peace.

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.  I’m not ungrateful about the things that have transpired in my life since I first received stem cell treatments in November of 2007, but I had hoped for different results  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 my life is not progressing the way I had hoped and it is extremely difficult dealing with the trials and tribulations that life throws at you on a daily basis  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 that the odds aren’t looking real good right now.

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, I didn’t lose this quantity of fluids.  My soul drips from my body one drip at a time, leaving a trail to mark my passage.  We have been working on my wrist for 6 weeks now, trying to get it to heal so I am better able to use it.  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 easier to grip and pick things up.  I just can’t stop using it.  That would give it time to heal, but I live my life in a wheelchair, utilizing my arms and hands as my legs.  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 pain and inhibiting my ability 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?  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 of not stretching my muscles and joints.  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 the excursion.  The only redeeming aspect of the activity is that it is cooler in the mountains and the scenery is much prettier, but eventually we 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% in Colorado by closing our plant.  The consumers don’t get it, Xcel is 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, on the eastern slope of Colorado, 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 increased gas 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 they 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 11 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.  I don’t know what I would do with myself if I couldn’t go 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 is crashing down around me.  This sucks!  Well, enough feeling sorry for myself.  You don’t want to read that crap anyway.  So, until the next time when I can summon up enough material to put down on paper, goodbye.

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.

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.

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.