Rusty Without Wheels

It has been awhile since I posted anything here so I figured I’d better communicate the happenings in my life. This Summer has been a hot, uneventful season. I am still unable to procure a job that will take into account my disability or experience. There is no demand for someone who has intimate knowledge in running a coal-fired power plant. The closet plant is 80 miles away and owned by a company different than the one I’d worked 33 years for. I spend my mornings surfing the Internet looking for and applying for jobs posted there. Thank God most of the job applications are being done on-line now instead of having to go from business to business applying in person. Technology has definitely benefitted those of us who are disabled and have trouble getting from place to place. I finally volunteered at the State of Colorado Division of Parks & Wildlife, doing whatever type of office work they needed done. The ironic thing is, even the State couldn’t find enough work to keep me busy on a daily basis. This was a real eye-opener in this era of budjet shortfalls and cutbacks. You’d think they would have tons of work needing done because of them being short of personnel and money. But, in my case they can’t utilize what few talents I possess. If it doesn’t pick-up once hunting season arrives (in October & November) I’ll have to find some thing else to do.

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.

Hello everyone.  Been a while since my last post and since there is news to report I figured I’d better write about it.

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.

Weird to think we have spent the last 3 years of our lives living for and undergoing embryonic stem cell treatments in India with Dr. Shroff, Dr. Ashish, and their wonderful staffs. It seems like the planning, organizing, and fund-raising efforts for these trips have taken on a life of their own, with us just being along for the ride. What a whirlwind of adventure. This will be the first Winter that we haven’t made the journey to New Delhi for treatments. We had an opportunity to go again, but we just didn’t have the financial resources to put it all together, lacking just the $10,000 needed for airfare. It doesn’t seem right that the airlines can be making these huge quarterly profits, charging exorbitant fees for booking, seating, checked luggage, tickets, and every thing else they want to charge you for just to get from one destination to another. They are almost as bad as the banking system, who are also making record profits after the American taxpayers bailed them out when their banking policies almost ruined our country. But the worst ones are the oil companies. How can the price of gas be so high and their profits be so huge when there is no shortage of oil? Talk about the need for federal regulation and oversight. These guys are killing us. With the US still struggling to emerge from this recession, and our unemployment still at record highs, the American people are struggling to make ends meet. Anyway, I transgress. This blog isn’t about economics or corporate profit margins, it’s about life and the journey for a better quality of life.

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.

Wow, it’s been quite some time since I last posted.  We have had some problems with our blog and the server, hopefully things are worked out and there will be no more inconveniences to the people log in or us trying to post.

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