Holy Cow! Again, I’ve let time slip through my fingers and transgressed, letting a couple of weeks go by since my last post. I’m beginning to develop a habit of not updating this, I’m irresponsible. This last week I’ve been occupied with processing the month-end reports for my company, Xcel Energy. Speaking of which, the previous posting was of the article my company’s newspaper, XTRA, published recently of our journeys to India and the subsequent results of the stem cell therapy we received. Thought you might like to read what they wrote about us. (The “Blog Master” loves the way I jump around in a paragraph, with various subject topics, then jump back to the main one I started with). Oh well, where was I? At work I’ve been pounding the key board, spewing out reams of paper and reports, all of which goes to some pencil-pusher to file away somewhere that no one will ever read or see them. I thought computers were suppose to lighten or eliminate the amounts of paper used in generating these types of reports and such. Some lightened workload! I was glad to see Friday finally get here so I could relax from the rigors of driving a computer and concentrate on practicing to walk.
I surprised my physical therapist Bruce last Monday with my ability to walk inside the parallel bars with crutches. The previous weekend I made myself work on getting a good weight shift onto my left foot and advancing the right one. Stepping with the left foot was no big deal. My right leg is an anchor and when I do a weight shift onto the right one, the left leg moves forward so freely it amazes me. It was the mental block I had developed against advancing my right foot that has been holding me back. I practiced (until I was soaking wet with sweat) placing one crutch at a time, in the right location after each step, so I could maintain my balance and still do the weight transfers necessary to make the step. Several times I had to use the parallel bars to hold myself up when shifting my weight, but I finally was able to travel the length of the bars.
At home, we had placed one end of the parallel bars against the wall, thus they are only open on the one end. The wall acts as my spotter on the closed end of the parallel bars while I get the crutches situated, balanced, and ready to begin stepping. This also allows me to rest. Leaning my back and butt against it instead of sitting in my wheelchair, which helps me build stamina and mental strength . . . knowing I can remain upright longer and still have the energy to walk. This is a motivating factor. Bruce and I continue to work on improving my balance – as everything hinges on it. Without balance, I will never be able to leave my wheelchair and be independent of it, walking with a walker or crutches. That is a hope of mine, not an expectation but a hope. I don’t want to be disappointed if I never achieve that ability and beat myself up over my “failure” to do so.
My body continues to experience powerful flutterings, tingles, and spasms. My feet feel like someone has plugged them into a light socket. They are constantly tingling now, a big change from never feeling them at all since the accident. Now when I try to curl my toes the tingling sensation gets really intense, returning to the constant when I relax from the effort. This is common with both feet. I still can’t get my toes to actually bend or curl. It seems like my foot is kinda quivering slightly, instead of the toes bending. The ability to feel a difference in the tingling sensation, when I’m attempting to move, has me very excited. I feel as though I am controlling the flow of energy to my feet and on the verge of controlling the muscles there. As of now, my feet are the only body parts that I can feel reacting to inputs I’m attempting. The other muscle groups that I can feel, don’t respond like my feet. Some of them are constantly buzzing or tingling too, but when they are stretched and worked is when I feel them the most. I feel like the nerve/muscle connections are improving and that the stem cells are working to rebuild and repair those broken and severed bridges from my brain to the lower body. This is the driving force behind the work I put in to improve. There have been changes, there is no denying it. Before India, there was nothing. Now, there is a myriad of sensations coursing through my lower body giving me and my family hope.
Dr. Shroff and Dr. Ashish felt that I would experience some bladder and bowel sensation and/or control from this round of stem cell injections. Unfortunately, none has manifested as of yet. I continue to deal with a hypersensitive bladder brought on from the first round of stem cell treatments and possibly intensified by the second set. Any pressure, bending, or lifting causes my bladder to release or leak. Interesting topic for our readers, huh? I hope everyone reading this never has to experience the frustration and embarrassment of an out-of-control bladder that can accompany paralysis. It seems as though my day revolves around when I plan to go to the bathroom and catheter myself so I can get through the day’s activities and appointments without peeing my pants. Sounds exciting doesn’t it? Such is my life. At least I have the ability to care for myself if I do experience problems in the course of a day, a lot of individuals don’t. This one faucet of my life was a huge influence on our decision to go to India. To maybe recover enough function to at least know when I need to go to the bathroom would be an enormous improvement in my life and is the only real goal I have for doing this. Anything else that my body may gain or experience, is just icing on the cake. I can only hope that my friends and doctors in India are right, and that someday I will regain this function and won’t ever have to suffer this indignity again.
Kathy and I met with our friend George Rossman and her associate Mary last week to discuss what type of fund raiser we could do to obtain the amount of financing we need to get to India this winter and at the same time possibly give us a start on the next trip after that. With the cost of one treatment and staying in India for one month, airfare, etc., we are in need of approximately $30,000 now. George and Mary are donating their time and talents to help us get a fund raiser off the ground and we can’t express how important their friendship and professionalism is to us. Please be sure to call George for any event organizing and planning you need: George Rossman, Event Masters, LLC, 970-216-8657.
This is the hardest aspect — trying to raise monies for these treatments. If we just had to raise enough money to go to India once, then it would have been a simple matter to do so; but we are the pioneers of an entirely new field of medical treatment. No one has ever done what we are attempting to do. There are no guidelines to help us know how many times we’ll need to have these treatments or how our bodies are going to respond to the stem cell therapy. All we have is what we have seen with our own eyes and what others have told us of their experiences. We have to plan for a year or two of further treatments and this puts us at a disadvantage for asking for help. Granted we are doing this so I can regain function and possibly obtain a higher quality of life, but others are going to benefit from this when we prove to the world that stem cell therapy works. People were glad to help fund our first trip, it was this new frontier of medicine, an adventure and exciting. We were going to India where I would undertake a revolutionary new treatment, which according to testimonials showed great promise. Now that we have made two trips to India, the perception is that I should be able to get out of my wheelchair and walk. After all, I’ve had two sets of stem cell treatments, there isn’t any reason for me to “not” walk. I only wish it were that simple and that my body had responded more radically to the stem cells enabling me to stand and walk. I can understand people’s reluctance to help us, especially with the problems our nation and the world are experiencing with the economy, but we can’t do this without the public’s help. It is just too expensive for us be able to this on our own. With that in mind, we decided to hold a Phantom Ball as our fund raiser this fall. The price of admission on the invitations being the donation people will be contributing us to “attend” this Phantom Ball. It was decided with the holidays soon upon us and the demands on everyone’s time, “inviting” people to donate to either our fund at Well’s Fargo or through the donation links on this site with an invitation would be a novel way to raise money and not inconvenience anyone as they attempt to enjoy the holiday season. We needed to target a large number of people and there wasn’t a venue available to accommodate and hold another type of fund-raiser that could meet our needs. Our long range plans are to hold another, outdoor fund-raiser late next spring or early summer. We are in this for the long haul. Please, we hope you can find it in your heart to help us. Thank you!
With our impending trip we also want to ask if people can help us out with airline mileage. We fly round-trip on United from Grand Junction to Denver and back. Then round-trip on Continental from Denver, Colorado to New Delhi, India and back. It is easier and better, if the tickets are bought in our names then given to us. There are too many fees and restrictions if you donate the miles to us and we try to redeem them. Please contact us at firstname.lastname@example.org to get the projected dates of our departures. This cost is the second biggest expenditure we have besides the stem cell treatments; and we saw airlines tickets triple in price between our first and second trips. Thank you again for doing what you can to help.
Peace be with you.