Rusty Without Wheels

By MELINDA MAWDSLEY
The Daily Sentinel

To view full article, click here 

Posted on May 5th, 2008 by admin
Filed under: My Entries | 1 Comment »

With this update, I will let you know about physical therapy and how my job-situation has played out.  I’ve had several more physical therapy appointments through the local hospital and all are benefitial, one way or another.  Working in the therapy pool was extremely hard and frustrating.  When my therapist, Bruce, asked me to make movements with my legs, trying to move them outwards, there was no core balance point for me to push from.  When working from a bed or exercise table your body is connected to the bed or table, giving you an anchor to focus and push from.  Consequently, there was little or no movements from my legs.  I found I was holding my shoulders and neck rigid trying to find a base to move from.  After about 10 minutes, my neck was tired and hurting from the effort, and we had to try another approach.  Bruce positioned my legs and drug me through the water, causing the resistance of the water against my body to stretch the joints and muscles in my legs and hips.  This was great!  I could actually feel some of the muscles, tendons, and ligaments stretching with the movement, so it was working.   I got to do some swimming, the back stroke, with a life vest on to provide floatation.  It has been almost 10 years since I was able to swim.   Before my injury in 1998, I loved the water and was a good swimmer, enjoying every moment I got to be in the water.  When I was at Craig Rehabilitation Hospital they tried to utilize their pool as a tool to alleviate the extreme back pain I was experiencing – it didn’t work, unfortunately.  So I have missed being able to be in the water, but it is a lot of work to get me into a pool for therapy.  A hoist and harness system is used to pick me up out of my wheelchair and deposit me into the water.  Once the therapy session is over, we have to re-rig the harness and hoist and lift me out of the pool.  Just dealing with getting in and out of the pool cuts into valuable therapy time and has no tangible results that I can see. 

We have continued using the support-harness to suspend me over a treadmill.  This allows me to walk for extended periods of time, (the most recent being 30 minutes), without suffering the extreme fatigue I experience walking with a walker.  Walking in this manner really gives me the opportunity to concentrate on performing the proper weight shifts I need to take each step and work on my foot placement during the step.  I don’t know if my body posture is ever going to allow me to focus my weight down through my legs instead of carrying all my weight, when I’m upright, in my arms and hands.  When I go to the gym to lift weights to try to get a walking session in on their set of parallel bars.  This allows me to work on my standing posture and build the necessary stamina to extend the time periods in my calipers.  We really need to get a set of parallel bars for our home.  I could work more on standing and walking when Kathy isn’t home.  We have to wait until she is home to do walking now.  This is my next project, I have to quit postponing it and get it done.

Now to the subject of my employment.  It has been 10 weeks now since we returned from India and I still haven’t been reinstate by my company, Xcel Energy, to return to the previous position I held before taking an unpaid leave of absence to go to India.  I am a union member and my union has been working to get me back to work.  There was a question of my restrictions being different than before the trip, but my doctor resubmitted them so they matched the original ones.  The company said there had to be a hearing to determine whether or not they could “accommodate” me in the same job I have done for the last six years of my 30 years working for this company.  It took them 9+ weeks to finally set a date for this hearing, which was held yesterday, April 8th.  It was agreed by all parties - Xcel Energy, the Union, and myself - that I could be accommodated under the restrictions imposed upon me medically.  However, I also had to have a drug/alcohol screen and sign a “Letter of Agreement” (which Xcel provided for the first time on the day of the hearing).  This letter stipulates certain conditions, concerning me, my job and my situation, that were not in affect when I originally went out on a disability in 2002 and signing this letter was a requirement before I can go back to work.  Needless to say, the Union and myself weren’t going to sign any letter before we had a chance to review it and negotiate its contents.  So, here I sit, updating our blog, waiting for legal proceedings to take place before I can resume working in the same job I had before this trip to India.  The trip to India didn’t change the fact that I’m a paraplegic and have certain physical limitations that limit me from working a normal job and prevent me from doing things an able-bodied person can do.  It makes us wonder if someone took offense to me participating in stem cell therapy and is delaying my return to work for that reason.  We have examined all the possible reasons why there could be a problem with my returning to work and have come up with nothing except the stem cell reasoning. 

The local newspaper, The Daily Sentinel, did a interview with us, April 1st, as a follow-up to the interview to the one they did prior to us leaving for India.  The Sentinel is aware of the problems facing me in my desire to return to work and is interested in doing a story from that perspective.  In fact, I just received a phone call from the reporter responsible for the story and we are going to get together later this week to discuss the situation.  Maybe public opinion will have an impact.  I also contacted a Denver, Colorado TV station to see if they too would be interested in doing a story on my plight.  I’m sorry!  As you can tell, I’m a little bit fixated on my job situation.  At the end of May we are going to do an interview with a Steamboat Springs, Colorado TV station on stem cells.  We are going to be there to support our daughter, Megan, who is going to run in their half marathon to raise money for our next trip to India in August.  We need all the help we can get in raising funds for my continued stem cell therapy.  We appreciate all people have done for us in the past to help us fund these treatments; and we still need more help.  We figure it will take 2 years worth of therapy to achieve the maximum results this program in India has to offer.  Please give if you can.  You have our undying gratitude for what has been done so far.  Thank you!

I must leave now to get ready for my next physical therapy session.  Thank you for taking the time to continue following us on this journey.  With your help and support, good things will continue with my body’s response to the stem cells already floating around in it.  God bless and take care.  Until next time, see ya!  Maybe the Blog Master will insert some pictures this time so you can see what’s been going on in our world.

Posted on April 12th, 2008 by admin
Filed under: My Entries | No Comments »

Hello again!  It’s been quite a while since I took the time to post and somethings are transpiring well.  I continue to gain deep muscle sensations in my groin area and upper thighs.  Recently while Kathy and I were doing my exercise I noticed I could actually feel the ligaments, tendons, and muscles stretching in my hip joints, rectum, and in my lower back.  This took me by surprise.   I had to think about what I was experiencing before I could verbalize it to Kathy.  I have a fluttering sensation in my left groin that I feel intermittently.  While driving I can feel my left leg moving, in my groin, as it bounces from the road’s bumps and at times I feel my pulse throbbing there while I’m in bed.  Sometimes I think I can feel the sensation of my pants moving across my butt and groin.  These are all new things I can sense in my body since we returned home, so the stem cells I had injected into me continue to work at creating new nerve bridges, providing pathways for nerve impulses to travel to my muscles.  Finding the time to do the necessary physical therapy has been a challenge.  Consequently I’m not progressing as well as I’d like to.  One of my doctors gave us a prescription for therapy through the local hospital and yesterday we went in for an evaluation.  Kathy and I both feel the therapist, Bruce, will be able to help me gain strength, stamina, and flexibility.  He even discussed using their therapy pool to help take the strain off my joints while we do exercises.  Sounds great.  Too bad it has taken so long to get these things set up.

I went to my first organized therapy session today, March 26th.  It was great!  We did some work on the parallel bars, then Bruce, put me into a harness and attached me to a lifting device which picked me and my calipers up into the air and centered us over a treadmill.  Once they had me positioned I was lowered onto the treadmill’s surface.  The harness supported most of my weight so I wasn’t having to support it with my arms which absolutely wears me out.  The fusion of my spine continues to be a problem with my ability to walk.  If I was able to thrust my hips forward and center my weight over and down through my legs I could stand and walk for longer periods before becoming tired.  The support device worked wonderfully!  I was able to concentrate on taking steps correctly, with the right weight transfers, and spacing my steps.  The main thing was I didn’t have to worry about becoming exhausted before I got a good walking session in.  We then worked on my stretching so my opposite thigh and leg don’t rise up when I pull my other knee towards my chest.  I didn’t even realise this was a problem.  I just assumed that my legs did that because of the spinal fusion and the paraplegia.  It’s great to learn new thing s about your body and work to correct the things that have been inoperable for 9.5 years.  Friday we are going to use their therapy pool, can’t wait to see what that entails.  Stay tuned .

I continue to battle a hyper-sensitive bladder.  Ever since we returned to the US and the indwelling catheter was finally removed, my bladder has been releasing with the slightest pressure.  Bending over or lifting is definitely not on my agenda to be attempting.  My urologist is trying to find the right combination of medication to give me some control over it.  I think as I progress, regaining lost function, I will have to go through each level of injury and deal with the symptoms associated with each.  Being a T-10 paraplegic I’ll have to deal with the problems of a T-12 para, which is bladder incontinence.  This is the way I’m going to approach the situation.  It’s just another hurdle I’m going to have to get over on my road to recovering function lost in my accident.

I attempted to return to work the Monday after we got home, February 4th, but my boss informed me I couldn’t return to work until I procured a medical release from my doctor.  This seemed kind of odd since we had gone to India for treatment and the medical profession here in the States had nothing to do with what we did and now they are responsible for determining whether or not I’m able to return to work.  Nothing has changed with my condition, other than the sensation changes and the slight leg movements I can now do, I’m still diagnosed as being a paraplegic.  I took an unpaid leave of absence to go to India.  There was no sick leave, vacation, or personal leave associated with our trip.   I don’t understand how the amount of weight I can lift or the length of my ability to sit effects my ability to perform my job duties.  I am confined to a wheelchair so I’m not going to be lifting weight in the course of doing my computer originated job and I definitely going to be sitting while I work.  The bureaucracy within my own company is beyond frustrating.  It’s been 8 weeks now and I’m still not back to work.  We are going to need the money I could be earning to go back to India for continued stem cell treatments.  With the response my body’s had to the therapy we can’t not go back.  Hopefully this will all be resolved soon.  My beautiful, remarkable wife is deligently working very hard trying to provide for us while I wait, impatiently, to go back to work 

Speaking of returning to India, I e-mailed Dr. Shroff and tentatively set up going back for the first of August.  She said to plan on being there for 4 weeks to receive my second round of stem cell treatments.  All we have to do now is raise $15,000.00 for the procedures and the cost of the airline tickets.  We have to appeal to the people out there to help us raise the necessary funds for this trip and others.   These are experimental medical procedures not covered by insurance and it is going to take several trips to get the maximum benefits from Dr. Shroff’s program.  I’m asking everyone to please help us go to India so I can continue to regain function in my body.  The directions to donate are linked on this web page.  Thank you for making the effort to help.   It is pretty humbling when people reach out and offer their support and for that we are eternally grateful.  We wouldn’t have been able to make the first trip without all of kindness and generosity that was shown us.  We really appreciate it.  Our daughter Megan is going to run in the Steamboat Springs marathon.  She is looking for sponsors so she can raise funds to help us.  If you would like to sponsor her, e-mail us and we’ll let you know to contact her.  We are anxious to go back to India and see how my body responds to the next series of stem cell injections and to reacquaint ourselves with the friends we made there.

We have had several people contact us for information regarding Dr. Shroff’s program.  One from Iceland, Saudi Arabia, and a bunch from here in the United States.  There have been a surprising number of people locally contact us, everyone is looking for help and this is an unique situation Dr. Shroff is giving people.  She is giving them hope.  We are happy to share our experiences with anyone who might be interested in exploring the possibility of going to India.  Dr. Shroff does more than just treat spinal cord injuries.  If you have questions about this wonderful program, please contact us, read our blog about our first trip at; www.rustywithoutwheels.com.  We’ll do what we can to help with advice or where to go to find answers to your questions.

I’ll try to do a better job of blogging.  With my upcoming therapy sessions there might be more positive results to report.  Dr. Shroff wanted to know what my doctors thought about the developments with my body.  Most were noncommittal, but a couple of them were very excited about what we had done and the prospects of continued improvements.  The one doctor, who is studying my blood to see if there is a chemical or genetic cause to my blood clots, was really excited for us.  The ones who are the most interested are bothered by the fact that this isn’t available here in the US.  They think our medical profession is suppose to be the best in the world and when people go overseas for treatments it makes them wonder if we are the best.  There are moral and ethical restraints here, plus a program such as Dr. Shroff’s is many years down the road for us in the United States.  Our FDA, Food & Drug Administration, has so many rules and regulations governing medical issues that people like me will die before help is made available here.  Unfortunately our society has become so caught up in litigation that it is impossible to develop medical procedures and drugs that can help people without taking years and a huge outlay of money to produce them.  If we could just see our way past wanting to blame someone for every little thing that happens to us and take the responsibility upon ourselves for our own actions.  I would sign a medical waiver absolving the medical profession of any liability if I could make the decisions concerning what medical care I desired or needed instead of someone making that decision for me.  We should have the right to decide for ourselves what’s best for us.  I do appreciate the FDA looking out for me, keeping bad drugs and medical procedures from harming me and my family, but it has evolved into such a bureaucracy that nothing seems to get done.

Thank you for your time and continued support in our quest to regain function through stem cell therapy.  If my experiences can help someone else who is injured or sick, then it will all be worth it.  Like Amanda Boxtel said, it is our responsibility to spread the word of Dr. Shroff’s program and show people what can be gained from experiencing it.  We are the pioneers in this unique journey and hope others can join on the road to recovery.  I’m sorry that “The Blog Master” is unable to edit this and add pictures.  As I stated earlier she is hard at work.  Hopefully she’ll be able to correct my grammar, provide her own insight to our lives, and  structure my story telling so that the next time it will be better.  Until then, see ya.

Posted on March 26th, 2008 by admin
Filed under: My Entries | 6 Comments »

We’re home!!  It’s taken a little while to get ourselves acclimated to life in the US and to recover from the jet-lag the flight home caused.  It took 33 hours from the time we stepped aboard the flight in Delhi to deplane in Montrose, Colorado.  The ironic thing is we landed at 4:00 pm Saturday and according to the time zones, the flight was only 16 hours long.  I don’t know if we can make that flight again without breaking it up into 2 segments, taking a day or night to rest along the way.  My body can’t take that kind of abuse, I hurt for days.  Luckily we made all the connections so we could watch the “Super Bowl” game on Sunday, (this is our championship game for football).

It’s winter here in Colorado.  Our Indian friends thought it was cold in Delhi, especially in the mornings, they wouldn’t like dealing with the temperatures here.  The lows are between -15 to -12*C and our highs are only getting up to around-3 to -2*C or so.  There was snow on the ground we when got home and Sunday night we got another 3″.  It has been trying to snow all day today.  With snow being our main source of water we need all we can get.  Some of our mountain communities have snow levels as high as their residents’ homes (see photo).  Amazing!

Monday morning I went back to work at the power plant.  It felt a little strange to not be going downstairs, at the hospital, for physical therapy.  Getting back to work will be good for me, I need to re-establish my routine so I can see where I’ll have the time to fit in the physical therapy needed to keep my lower body relearning how to respond to impulses from my brain.  My co-workers had lots of questions about India, they had been following our journey on this blog.  While at work I was informed I needed a medical release from my local doctor before I could resume working.  I wish I had been aware of this requirement before returning to work.  Just another hurdle to clear in this journey of life.

Monday afternoon the catheter which was inserted January 2nd in India when my urethra was torn, was finally removed.  It has been a long month of having to deal with it, now all I have to do is re-train my bladder to a schedule.  Hopefully I’ll gain more bladder control and sensation as time goes on from the stem cell treatments.

These next few days will be dedicated to getting  the necessary equipment; a bed or table to do my physical therapy on, a walker that will allow me to walk with calipers on, and most importantly, a support base where I can get people to help me with the necessary exercises and therapy my body needs to keep developing the injected stem cells.  It is just too hard for Kathy to have to do every day!  I’ve scheduled a doctor’s appointment to see if he will okay a prescription for a therapist, hopefully he will support my decision to undertake this path; otherwise we’ll have to organize someone independently to help.  Shivani, my therapist in Delhi, told me to concentrate on using a walker to walk so I’ll hold off on getting parallel bars and try without them. I’ll try to pursue all avenues of help available to me, the main thing is to get the therapy somehow.

Now that we are home it is already time to start planning for our return trip to India, for round 2 of stem cell treatments.  Kathy and I are going to find a way for people who donate to be able to get a tax deduction for their contributions.  There are non-profit organizations that will help with channeling money for us, we just have to find the right one.  I think Amanda Boxtel has done this for her funding and will be a good source for information concerning this. This program is going to take a couple of years of our lives to achieve maximum results from, therefore it is going to take some creative thinking to come up with ways to raise money to fund our participation in Dr. Shroff’s program.  We are extremely grateful for everyone who has helped us so far and choose to help us in the future.  It is really too bad we have to journey half way around the globe to get these treatments.  There should be an option available to everyone here in the US,  it’s hard to believe we’re considered leaders in the world of medicine and science.

Stay tuned to this site as we will do updates periodically.  We will attempt to keep everyone informed as to our progress, especially if any new sensations appear or if I gain more motor functions, and our plans for the future.

Posted on February 10th, 2008 by admin
Filed under: My Entries | 5 Comments »

This is the end of January and we simply cannot believe it. Our two months of embryonic stem cell therapy has gone by so fast and so slow. Although it is the end of therapy, it is just the beginning of a long road back to mobility for Rusty.

After being here and seeing the leaps of improvement in most patients, we thank God for placing this trip in our path.

Rusty began with much independence - he drives, he works, he exercises, and he (for the most part) takes care of himself. But human nature always “wants” more. He misses walking in the aspen trees, smelling wet leaves, being on the same hillside as the wildlife, getting up in the morning without terrible back pain. He is still far from being able to return to those activities without depending on Kirk or me or someone . . . but he is one tiny step closer to making it possible. Rusty has found the way to mobility and now has the ability to move his legs and his feet, and has a little muscle power in the bowel/bladder. The work is in building enough muscle:  to hold himself up while standing; to push urine out; and to steady himself when he gets off-balance. The next step is to improve on all this and then get some sensation back as well. Human nature always “wants” more.  Rusty leaves here with more independence. We leave having experienced much, seen much, and hopefully, learned much. There will be parts of our lives that will change forever from this trip to India.

Rusty comes home with calipers that can help him walk, however, at first he will only be able to walk at our home and with parallel bars. With much work to strengthen himself and a second trip back to India, the plan is to be able to walk with calipers and a walker or arm crutches; have more power over his bowel/bladder; and have the deep sensation rise to the skin surface for a light-touch sensation. Possibly, by the third or fourth trip here for stem cell injections, our goal is to be able to “feel” when the bladder is full, get up in the morning and not have pain all day in his back, and to be able to walk to the coffee pot without calipers or braces or crutches. Human nature always “wants” more. Our hopes . . . among many . . . would be to not forget what it was like before stem cell therapy so that we would always, always be thankful and appreciative and humble. As part of the changes in our lives, we want to live simpler, waste less, be kinder just like the strangers we have met in India, and make some contribution to mankind. Maybe we will write a book or maybe we can help by speaking before Congress. Human embryonic stem cells are the way to medical independence and hope for patients suffering from incurable and terminal conditions like Parkinsonism, motor neuron disease, Alzheimer, paralysis, diabetes, or genetic and other auto-immune disorders. As the years wear on without treatment, muscle mass is lost, self-dependence is lost, general health deteriorates, resistence to infection goes down, etc., etc.  We feel it is imperative in a diagnosed, incurable case, the earlier the patient starts human embryonic stem cell therapy the faster the chances are for recovery.

Please learn all you can about stem cells as it could touch you or (maybe worse) someone in your family. As I understand it from Dr. Geeta Shroff’s book, Human Embryonic Stem Cells (2005), there are three major types of stem cell: embryonic, fetal and adult (which includes cord stem cells). Each comes from different sources and has somewhat different properties. The line of human embryonic stem cells used by Dr. Shroff was from one surplus embryo given by a suitable donor created and extracted in a petri dish (which would have been discarded had it not been donated). This one embryonic stem cell then produced the line from which Dr. Shroff is treating her patients. We are so thankful. Rusty’s success is that he got more results than we “hoped” for (we did not “expect” anything).

Please check in on this blog every once in a while as we will occasionally report Rusty’s progress and status. For us from India, it is back to our beloved America, our work and lifestyle, and, of course, the SUPER BOWL on Sunday February 3^rd!  Signing off from New Delhi, India - Kathy!

NuTech Medi World, Green Park Extension, New Delhi

My wife uses eloquent words to describe what this journey to India has meant and done for us.  I still have trouble believing we made this trip, undertook an extensive embryonic stem cell treatment program, saw and experienced India as we never dreamed possible, met and interacted with so many gracious, kind people, and achieved results we had only hoped were possible. We have seen what dedication, hard work, and stem cells can do in the human body.  The patients who have returned for their 2nd and 3rd times have shown us amazing things are possible and they are an inspiration to the rest of us.  We thank them for sharing their stories and time with us.

Dr. Shroff has given us an opportunity to reclaim at least a part of our life.  The staff at both of the hospitals have been kind, courteous, and professional.  They have gone out of their way to provide us with the necessary support so we could achieve maximum results from this program and we thank them for those efforts.   It will be hard saying goodbye, but we will be back to rekindle the friendships and accept the challenges coming back to India will bring. 

It is unknown how much function I will regain from taking part in this remarkable therapy.   What is known is there have been changes in my motor skills, the sensations my body is feeling, and the ability to control parts of my bodily functions.  This is the one aspect of my life we had hoped to see change in and we haven’t been disappointed.   It is human nature to want more than what we already possess, we have seen some spectacular results here in India and they have made us want more from life.  Now we return home to our family and friends — to those who supported us emotionally and financially.  This journey wouldn’t have been possible without the giving and kindness of so many.  We thank everyone for what they have done for us.  Peace be with all.

Posted on January 30th, 2008 by admin
Filed under: My Entries | 9 Comments »