Rusty Without Wheels

Foggy days in India.

We made it!  After a long, arduous trip we arrived in India late Thursday night.  OP (Dr. Ashish’s right-hand man) met us at the airport to transport us to the clinic.  The fog was so thick we couldn’t see the other jets parked on the different concourses, or discern any of the buildings.  It was kind of spooky in a way, but it was also just India.  Winter is in season here too, so fog is normal this time of year.  We just hadn’t seen any that thick – ever.  It was 60*F when we landed, so to us it felt wonderful,  but as we had to wait for our luggage, Kathy and I both seriously overheated.  Too many polar fleece garments on for the cold back home.  On the way to the clinic, OP and the taxi driver were cranking up the heater, complaining of the cold as I was rolling down the windows trying to keep from passing out from heat exhaustion.  The streets of Delhi were erie with the fog shrouding the bustling traffic and muting the beeping horns.  We finally collapsed into our room a little after midnight.  I was toast from the exhausting trip, not having slept much on the plane, but thank God Kathy had enough energy to organize things enough to make room for our luggage and get me into bed.  I crashed, not hearing her continued noise as she put things up so she could make her bed on the floor. 

Street view from our room:  cars, motorcycles, pedestrians, fruit/bike cart, wheeled cart, laundry hanging to dry, and lots of dust and fog.

The sisters (nurses) told us, when we arrived at NuTech and got signed in, that I already had a procedure scheduled for the next day.  This was welcome news, even though we were too tired to think.   It was heartening Dr. Shroff and Dr. Ashish plan to schedule as many procedures as my body can take because of the limited time-frame we have to deal with and are going to pump as many stem cells into my body as possible.  I believe that the volume of stem cells is equally important as to the frequency they are received. 

Friday dawned early for us.  I struggled with jet lag, not sleeping well during the night and unable to stay in bed because of the discomfort my body was suffering.  Kathy and I got up to watch the dawn, but the fog was so thick we couldn’t even see across the street.  It was difficult to believe we were actually here, but looking out the window and at the furnishing of our room we knew it was true.   We are lucky to be in a street-side room on the 3rd floor (4th to us – here they call the first floor “0″).  The street feels like it is a long way down, but we can still see out and watch all the excitement and events.  The sisters came by and said I was scheduled for physio with my therapist Shivani, then after lunch my procedure would be here at NuTech.  Kathy and I reintroduced ourselves to the sisters we remembered and met new ones.  Shivani greeted us warmly.  After filling out a recent medical history, she got to work trying to stretch out my miserable body.  I was so stiff.  It felt like each of my legs were filled with concrete, and that all of my joints had been super glued.  It felt like my body was someone else’s.  Too strange, I’ve never felt these types of sensations before.  Shivani kept it light and easy.

Skyline construction workers.

The street is so busy … with all modes of travel.  Just amazing to watch.

After lunch, Dr. Ashish’s technicians and OP, came calling.  They hauled me to the operating theatre, where Dr. Ashish injected stem cells into the muscles in my lower, right lumbar area.  It didn’t take long, especially with us talking and asking questions of each other.  Kathy went over to the local market to get our needed supplies, having them delivered to the room.  I rested and put the word out on Facebook that we were alive and made it safely here.  Kathy worked around the room until exhaustion caught up with her, we both crashed for a couple of hours, missing yoga.  We ate, watched some TV, and turned in early, still not recovered from the trip. 

Travelling cart with beans and lentils.

It was another ugly night for me.  Slept OK until around 4:00 am then my body wouldn’t relax.  It spasmed relentlessly.  As a result, I was tired and stiff at therapy.  Kathy says there’s something to sleeping on the floor and not being in the same bed with me!  Didn’t matter much, though; she was awake and up for the day by 5:15 anyway.

Several puppies and their parents live in the lot across the street.

It’s funny how all of the Indians are all bundled up against the cold and we are running our air-conditioner in the room, and wearing short-sleeve shirts because we’re too hot.  We went outside to sit in the sun and watch people this afternoon – the temp was a great 69*F.  I am white, pasty and feel like crap.  I am exhausted.  Hopefully I will sleep tonight and feel better in the morning.  Tomorrow, Sunday, we are going to the Hyatt Hotel for lunch, taking a tut-tut and seeing the sights.  More to follow.  Kathy will proof this and add a couple of pictures.  Bye.

PS.  I dropped our Steripen today (ultra-violet light used to sterilize water).  It is non-functioning now.  We’ll have to buy all of our water now, where I use to sterilize the water for dishwashing and such.  Bummer!

We are interesting too.

Christmas is tomorrow.  I want to take this opportunity to wish everyone a very Merry Christmas and a Joyous New Year.  We have a lot to be thankful for from this past year.  We journeyed to India in February and since that series of stem cell treatments I have continued to experience increased sensations and feelings in my lower body, especially over the past 2 months.  My sensations have increased in strength and intensity.  We can only hope that with this next trip, in January 2010, the upcoming stem cell treatments will lead to new and dramatic changes.  This is our dream and hope.  We pray that God will allow my body to respond and that I gain more control of the nerve impulses to the muscles in my legs and feet.

This past 3 weeks, since we had the big snow, I have been battling painful arthritis in my neck, shoulders, elbows, wrists, and hands.  The humidity has been very high and the temperatures very low.  I had arthritis in my hips from when I broke my back in 1990, but I haven’t suffered from it since I became paralyzed in 1998.  For some reason it has reared its ugly head and forced me to deal with the consequences of my actions, which caused my injury.  Last week I finally approached my pain doctor for medication to help ease the joint swelling and pain.  In less than 4 weeks we leave for New Delhi, hopefully the warmer weather there will ease the discomfort, at least I am hoping it will.  It gives me some thing to look forward to besides receiving more stem cells.

The next four weeks will be stressful, especially for my wife, Kathy, as she takes care of most of the details and packing for our trip to India.  Thank you God for giving me a spouse who is willing and able to take care of me.  This is not the kind of life I envisioned spending with my wife, but it is what we have.  I can’t change that fact.  I screwed up, period.  Our lives changed in the blink of an eye when I wrecked.  Once some thing like this happens, there are no “do overs”.  All we can do is deal with what we have and go forward.  Hopefully this next round of stem cell treatments will help improve our quality of life, we can only pray and believe it will happen.

Have a Merry Christmas!  Stay tuned, next up will be our reporting from India.  I hope people still use the information from our experiences and it helps them find answers for their own problems.  Peace be with all of you!

So begins another holiday season.  With the rush to shop and buy presents for those who are close to us and who we wish to say thank you to for all they have done for us over the past year.  This year has gone by so fast.  We got so involved with organizing and putting on our 5K benefit run, which was our fund raiser for our January 2010 trip back to India for our fourth round of stem cell treatments, that it doesn’t seem as though we did any thing else.  I don’t know what I have done with my time, spaced it out I guess. 

Kathy and I are both looking forward to returning to India.  Hopefully we will experience more nerve/muscular sensations and possibly gain some motor control.  I have been amazed, over the past two and a half months or so, that my body has gained a lot more sensation in my lower extremities.  The muscles and nerves in my thighs, knees, feet, groin, buttocks, abdomen, and lower back seem a great deal stronger.  When I am at the gym, either working out or having physical therapy, my lower body seems to come alive from the exertions I am doing.  The tingling sensations that I feel all the time in my nerves and muscles increase in intensity, giving me the feeling that I can accomplish any movement I try.  There seems to be so much feeling present, constantly.  It is so odd to have all of this going on and still have no motor movement or control over my limbs.  It feels like I should just be able to raise my legs up,  while lying down, or bend my knees, curl my toes, flex my feet, anything.  Hell, it feels like I should be able walk, but my legs still can’t support my body’s weight without braces on.  To be able to feel the muscles in my legs, groin, buttocks, and back stretch, move, elongate, and contract while I am up walking, or using the recumbent elliptical machine, is mind blowing.  How can I feel all of this going on and not be able to control my movements?  I pray that God allows me to experience more, that he allows me to gain some control over my bladder, or even allows me to be able to feel when my bladder is full and needing emptying.  That would be one the greatest gift we could receive.

I have had a bunch of testing done recently, my doctors wanted a 100,000 mile check-up of my bladder and kidneys.  I had to have an ultrasound done to see if there had been any damage done to either organ over the past years and especially the past few months because of my attempts to urinate on my own.  Bearing down with my muscles, to get the bladder to release, can cause damage to the bladder, but especially the kidneys.  They also performed a bladder pressure test to see what levels of pressure my bladder could generate when they filled it and when I tried to go.  Unfortunately, some of the pressure spikes were above the level they wanted to see, so I was cautioned to control how hard I was pushing so as to not damage the kidneys, which could lead to kidney failure ultimately.  I’m glad we had these tests run, so I know to temper my efforts.  Hopefully the next round of treatments will give us more control of the associated muscles thus reducing the efforts involved in needing to go.

We spent Thanksgiving with Kathy’s parents and brother up in Rifle, CO.  It was so nice, warm and sunny.  The Mule Deer were in rut, so there were bucks chasing does all over the place.  I miss being able to see the wildlife interact like that.  You can’t see stuff like that living in the city.  The food and company was outstanding.  Can’t beat going home for the holidays.  The gas drilling has scaled back a lot because of the lower natural gas prices, so there weren’t gas well service trucks roaring up and down the road all day long.  That was probably one of the best parts, that and the magnificent views.  God, it is so beautiful up there, with the mountains and river right there.  Oh, I miss living there.  Reality sucks.

Recently, I was able to go elk hunting with a couple of high school classmates of mine.  Kirk Swallow and Tony Manupella got permission for me to hunt some private property north of Rifle, CO for late season cow elk.  I picked up my brother-in-law, Kirk Dotson, and met up with my friends.  It was a concerted effort that paid off in me harvesting a nice cow.  The meat and sausages from this animal will be greatly appreciated and tasty.  I want to thank my friends and brother-in-law for their caring and giving help which allowed me to get out and do the thing I love most.  It is tough finding a place that can accommodate a wheelchair bound hunter and afford him the opportunity to be successful.  I also want to extend my thanks to the land owner, Sam Potter, because without his permission none of this would have been possible.  Thank you all!

This morning we awoke to about 8″ of snow.  Man, that was the most snow that we’ve had in years.  The roads were terrible and people were driving like idiots.  Luckily, I was able to drive to work without incident.  Good old Toyota 4-Runner took care of me, but it was odd driving in that much snow with hand controls.  There were car wrecks every where.  Suppose to snow the rest of the day and into the night.  We might get a bunch more snow.  Wow!  The Blog Master will post some photos so our Indian friends can see what a “real” winter looks like.  It is impossible to imagine New Delhi with even half of our snow, that city would shutdown.  They think it is cold there, our low temperatures are about a -15*C, (5*F), in their scale.  Soon it will be below 0*F here.  That’s cold!  Going to Delhi will be like having Spring in the middle of Winter, I look forward to their warm temperatures.

We hope everyone has a very Merry Christmas and a Joyous New Year.  Soon it will be time to leave for India, January 20, 2010.  Hope Dr. Shroff has our street-view room reserved for us because we’ll be there before she knows it.  Peace to all!

Well, we’re almost a week removed from holding our 5K Benefit Run – “Race For Mobility”.  Overall things went pretty well.  There was about 160 who turned out to participate, 41 runners and the rest were walkers and “rollers”. 

There were 3 wheelchair participates counting me.  On the Friday before the race IHOP notified us that they had not ordered the food they agreed to donate for the pancake breakfast.  Totally freaked us out, but Kathy got together with them and it all turned out fine — pancakes, sausage, eggs, and orange juice.  Plus, Starbucks and Traders both had coffee there!  Bananas Fun Park donated a Bump N Jump for the kids to play on, Central Distributing donated a ton of water/juice products, and Lee VanHouten, from the Small Business Incubator, brought his grill and cooked the breakfast. 

We had an amazing group of volunteers who helped with race registration, as race-course marshalls, finish-line helpers, Sue Rochon with pre- and race day registration, and others helped with the pancake breakfast.  Randy Cooper was the race director and race course manager.  Without all of these people and groups stepping up to help us put this event on, it never would have happened.  We are extremely grateful for everyone’s help and support.  Thank you.  We gave away over $7,500 in door prizes at the drawing after the race.  A big thank you to all those companies and individuals who donated prizes, this really made the event a big success. 

Nattana Johnson and her staff at Monument Graphics put together all of the race literature, registration forms, poster, and promoted the race through several mediums.  Thank you, you guys were awesome!  Ronda Sutton was an amazing “wonder woman” in going to task, getting things done, and organizing stuff.  Also, we thank her for these photos (she was the only one smart enough to record these memories).  The biggest thank you goes to my bride, Kathy.  Without her undying love, support, and work this event would have never happened, period.  Thanks, Babe.  I love you!  We took all of the leftover food, water, and juices  (with John and Holly Alm’s help) to the county homeless shelter and donated it.  I know they will be able to use it! 

PS. I forgot to thank all of the sponsors who donated time, money, and personnel to help offset the costs of putting this on — plus their employees, especially Land Title, for all they did.  This was an amazing outpouring of support from those who donated a lot of their time, energy, and expertize to help us.  Our community has some pretty incredible, giving, and kind people living in it who are willing to do whatever it takes to help their fellow mankind out.  We are humbled and grateful.

Now that the benefit is over and all of the thank you’s are sent, it is time to focus on getting my body prepared for the trip to India in January 2010.  Kathy has us scheduled to leave Grand Junction on January 20.  With the restrictions the airlines imposed on us using air miles (that we have paid for over the months) we won’t be able to spend quite a full month in India getting treatments.   Hopefully Dr.’s Shroff and Ashish will be able to get all of the treatment procedures scheduled so we can maximize the time we are there.  I would rather focus on getting the stem cell treatments then get whatever physical therapy we can fit in.  By now we pretty much know what has to be done therapy-wise for me to progress.  As my body responds to the stem cells and I gain more sensation and hopefully motor control, we have to adapt my therapy to focus on what gains are showing up.  Kathy and I both hope that I develop bladder sensation and control this time around.  After the last set of treatments I was able to go to the bathroom, but lacked any bladder sensation or control.  It would be great if I developed sensation/control of all of my bodily functions, but I am a realist and will take whatever happens - or not.  All we can do is try.

I lost my physical therapist, Bruce, as he moved back to Michigan.  Now, Tracy and Jesse oversee my progress.  Both are task masters, who are very focused on my progressing forward on regaining any possible motor control of the muscles.  We work on stretching my hip flexors and lower limbs so there is an adequate range of motion for me to manipulate muscles, tendons, and ligaments and on my walking gait.  Walking with braces utilizing a walker, crutches, or parallel bars, continues to be extremely hard.  No matter which mode of locomotion I do it brutalizes my hands, thumbs, and wrists -especially the right one.  At times I don’t want to walk because of the pain it causes, but know that if I can make progress that maybe I can work past this stage and the pain will lessen or go away.  There is no way to know for sure except to keep working and hope. 

I know the Blog Master wants to add some photos from the race, so be patient.  It might be a couple of days after this post before she can get to them and edit my handiwork.  She definitely needs to oversee my work, otherwise I will run amok, unsupervised and out of control.  That’s just who I am!  Later.

Every thing is a go for our 5K “Race For Mobility”.  We have been getting more donations and sponsors for the event, and now have over $6,000 in door prizes to give away.  I’m going to give out all of the race information here again, so everyone is updated. 

The “Race For Mobility” 5K Benefit at Canyon View Park, Grand Junction, CO, on October 25, 2009 at 10:00 am  The community has been great at giving us donations to give away.  Make sure to get registered:  online, in person, or by mail: 

Online at www.active.com (search Race For Mobility);

Download a race registration form at www.monumentgraphics.com/rusty/registration-form.pdf and mail it to the included address;  

go on Facebook.com and search for “Race For Mobility”;

or pick up a registration form at Summit Canyon Mountaineering at 5th & Main, downtown Grand Junction.

Other than beating ourselves up getting this race organized, we are also working on scheduling our next trip to India.  Kathy has been scouring the Internet trying to get us a deal with the airlines and it looks like we will be leaving Grand Junction on January 20, 2010 arriving in New Delhi, India on January 21st.  Because of the restrictions the airlines put on us, we won’t be able to spend a month in India.  We are scheduled to leave there on February 16, 2009, arriving home on the 17th.  I hope that Dr.’s Shroff and Ashish can schedule all of the necessary treatments to be done in a shortened time-frame.  Plus, I’m hoping that my body will accept and deal with the rigors of getting more procedures done in a shorter period.  We’ll just have to wait and see what happens.

I have had a bunch of testing done lately to see what is the source of these weird fever/shivering spells I’ve been suffering every time we go some where.  Other than my urine being contaminated once with E-coli and some other bacteria after our trip to Boulder for our daughter Kari’s wedding, that aspect of my health is ok.  All of the blood work has come back normal except 2 elevated liver enzymes.  They drew more blood last week to retest those, but no results yet.  I do know that I am a little leery of travelling to India with the recent responses my body has exhibited to the fatigue and stress brought on by the travel.  I’d much rather get sick here in the US than in India.  I’m tired of feeling like crap, so I’m hoping some thing shows up in my blood.  There is talk of seeing an infectious disease doctor if nothing turns up.  Bummer for me, more doctors!

Therapy has been brutal these last couple of weeks.  My hands, especially my right thumb joint and wrist, have just been killing me when I’m upright walking with my braces and a walker.  The amount of weight and pressure my hands must bear because of my physical body positioning, is immense.  Bruce Greenlee, my physical therapist moved to Michigan, so I am working with Tracy and Jesse now.  Jesse wrapped the walker’s handles with an additional layer of foam padding yesterday to see if increasing the surface area contact between my hands and the walker’s handles would alleviate some of the pressure.  It worked!  I doubled the the distance I was able to walk before my arms cried out, trembling with fatigue.  We walked well over a 100′ before taking a break.  I’m going to look at a self-molding foam that is used to custom fit bow handles to an individuals’ own hand signature and grip to see if that will provide the necessary relief for my hands.  I think this might be a great idea, I just have to find some the stuff on the Internet.  Pain is such a wonderful deterrent to progress and working out.

No input from the Blog Master again, she has been busy with the race and scheduling for India.  I would imagine she’ll have pictures to add after the race, just barely 10 days until the big event.  God, I hope people show up.  It would be a real drag to go through all of this and have no one come.  I understand with the economy the way it is, that people just don’t have the discretionary money to do the fun, play things they use to.  This might be the last blog until after the race.  If so, wish us luck!  Come out and support us if you can.  See you at Canyon View Park on October 25, 2009 at 10:00 am.  Bye!!

The “Race For Mobility” 5K Benefit at Canyon View Park, Grand Junction, CO, on October 25, 2009 at 10:00 am, is coming together.  More of the details are getting firmed up and we are continuing to build the door-prize dollar amount.  We are approaching $6,000 in door prizes.  The community has been great at giving us donations to give away.  Make sure to get registered:  online, in person, or by mail: 

Online at www.active.com (search Race For Mobility);

download a race registration form at www.monumentgraphics.com/rusty/registration-form.pdf and mail it to the included address;  

go on Facebook.com and search for “Race For Mobility”;

or pick up a registration form at Summit Canyon Mountaineering at 5th & Main, downtown Grand Junction.

The latest info I have on the pancake breakfast we were trying to organize to go along with the race is that it’s a go.  The price of breakfast is included for the race participates, but there will be a charge for all non-racers.  There will also be donated coffee and beverages (I hope I got this right).  Kathy and I went over a wheelchair, baby stroller, non-runner route last Sunday, and came up with an almost full, all sidewalk, 5K route.  There will be a “Bump’n'Jump” for the kids, if the weather cooperates.  We think this will be a fun event for all.  Since it is a “fun run”, even though it will be timed, it is going to be laid back.  So, come out and join us.  Help us offset some of the costs of returning to India for more stem cell treatments.  Thank you for your help and support.  See ya there!

September 29, 2009:  It has been an eventful last couple of weeks.  We married off our youngest daughter, Kari, up in the mountains above Boulder, CO at a small old gold mining community called Gold Hill.  The weather was beautiful and the views from the town of the mountains and peaks of the Continental Divide, were spectacular.  The ceremony was totally nontraditional, with Kari and her fiance’ Joel marrying themselves.  The reception was held in a historic bar/restaurant, there in Gold Hill, and was great.  Everybody seemed to have a good time and the timing couldn’t have been better, for it rained and snowed on Kathy and I as we drove home over the mountains.

Right after we got home I started feeling poorly.  I developed a fever which was accompanied by severe shivering, felt like my spine was going to explode I shook so hard.  Then my urine started looked like unfiltered apple cider, with streaks of blood laced throughout it.  This is the third trip in a row, (fourth counting coming home from India in March), that I have gotten sick after coming home from a trip.  Went to the doctor on Tuesday and gave him blood and urine samples.  He gave me antibiotics and sent things to the lab.  Blood came back normal, but there was e-coli and another bacteria in my urine.  With a UTI I can’t keep keep a dry set of clothes on, so I missed work Wednesday and spent the day changing and washing clothes at home.  Man, was that ever fun.  Missed therapy all week because I felt like crap.  The drugs helped clear up my urine, but I am still not feeling good.  I had a standing appointment with my pain and therapy doctor today, so we’ll discuss this situation and maybe come up with a plan to get me healthy.  I was concerned that maybe my neurological system was getting out of whack from the stress and fatigue of travelling, but I just don’t know.  It’s too weird to have this keep happening, plus I am getting damn tired, and a little pissed-off(literally), at getting sick every time we go somewhere.   We’ll see what happens today.

I’ve been telling everyone that we have been working on organizing a 5K Benefit to be held out at Canyon View Park, here in Grand Junction, CO at 10:00 am.  Here is where you can get the information and registration forms.  Race headquarters is Summit Canyon Mountaineering at 5th & Main in Grand Junction.  Participates can register online at;  www.active.com This is an online events’ register.  Search for, “Race For Mobility”, in Grand Junction, CO on October 25, 2009.  Also, there is a pdf file that can be downloaded, filled out, and mailed in at; www.monumentgraphics.com/rusty/registration-form.pdf  Facebook also has a site, go to Facebook and do a search for “Race For Mobility”, there you should find all of the race literature.  I’ll have to find out more about the FB site and verify that address.  Several local businesses will have posters advertising the event and give registration information.  We are planning and working at getting radio, TV, and newspaper advertising help to get the word out so people can make plans to attend.

There will be pre-race registration, for those who don’t send theirs in or don’t register on line, from 9:00 to 10:00 the morning of the race.  So far we have gathered more than $5,000.00 in door-prizes to give away after the race and are working at getting even more.  One local business donated a $1,000 gift certificate, plus there are others for up to $500.  I want to thank the local business community for their help and support, but we could use even more help.  We are still trying to get a pancake breakfast to go along with the race, but are not having any luck getting sponsorship for it.  So, if anyone can lend a hand to help get this set up that would be great.  Contact me at: 970-241-4595 if you can help.  We are also in need of race marshall’s, to help direct runners and other participants, making sure they stay on course.

That’s about it for happenings in my life.  We have been focused on getting this benefit going, every thing else is taking a backseat to it.  Our youngest daughter, Kari, is getting married this weekend in the hills above Boulder, CO.  That should be an interesting, fun time.  Finally, she becomes someone else’s responsibility.  Good luck, Joel(that’s her fiance’), you’re going to need it!!

Therapy has been brutal.  My hands are now hurting for days after walking, just too much weight for them to support.  I have noticed my gaiting form has improved.  I’m taking pretty uniform steps until I start getting tired, then my form kind of goes to hell, but there has been noticeable progress.  I just need to keep moving forward, can’t do anything else.  For some reason my bladder has basically stopped releasing when I try to go to the bathroom.  Not sure what’s happening there, if it’s just a phase or what.  Pretty strange to be seeing some progress and then just have it stop.  I’ll keep working at it and see what develops.  I do go see my doc in a couple of weeks, so we’ll see.

Come support us at our fund raiser, the 5K.   We would appreciate everyone coming out and being a part of our event.  Funds raised will help us offset the costs of returning to India, in January 2010, for another round of stem cell treatments.  Thank you.  We’ll see you at the race on 10/25/2009, at Canyon View Park.

P.S. I went up to my in-laws place in Rifle, CO last evening (9/15/2009), and harvested a 4-point mule deer buck with my muzzle loader.  I am one happy dude today.  Sausage for another year, yah!!!