Posts filed under 'sci'
The last couple of months I have started noticing some small but significant improvements. About two months ago I could actually feel pressure in my bladder when it is full, and I also started feeling hunger pains (but cannot fill the outside of my stomach). About a month and half ago I could feel my heart beating, but before that I didn’t even realize that I was unable to feel it. Then about a month ago I ended up really bad pressure sores on the bottom of both of my feet, and I could actually feel the throbbing. It hurt so bad I was almost in tears. ( I still cannot feel someone touched my feet or legs). Who would’ve thought that I would be kind of excited to actually feel pain.
August 9th, 2011
I have been home for about a week and I am finally getting caught up on my sleep. I was sick for a few days when I got home, but I’m feeling fine now. Yesterday we went and looked at a therapy place here in Elko, and it looks very promising. One of the therapists there I have worked with before and the other therapists did her internship at the University of Utah on the spinal injury team. They do have a arm bike, so they seem to be the most equipped to help me here. We also want to try to drive to Salt Lake a couple times a month to go to a therapy place over there. I’m going to get my caregivers trained on some exercises so we can do that at home, and I’m looking at trying to purchase a standing frame. The next 4 to 6 months are the most critical for stem cells, because they say this is the time they are determining where to implant and what to become.
I know I want to try and go back to China, for another round of stem cell transfusion, and about one year. So I have to get back into fund-raising again. I’m starting to make a second cookbook, so if anybody has any recipes they would like to contribute please e-mail me. I will start posting more once we get started with therapy.
March 19th, 2010
I changed the title my last post, because I realized it was a little confusing.
Yesterday the Dr. came in to do a new feeling test poking me with a little needle, and my feeling now is down one more spinal level to a T3 level. I am also getting a lot more control of my arms, and the doctor said she wants me to continue to strengthen my hands. She was also saying that she believes that I can have a good recovery as long as I keep up with my therapy. She said the next 4 to 6 months is when the stem cells will find their home and starts implanting.
Last night when Judy put me to bed she pulled my hips to the left, and my hips scooted me back to the right side, and she was really surprised because my hips do not usually moved by themselves it is usually only my legs. Then we had a movie on that had a really good bongo beats playing, and my right leg and hip look like it was trying to dance. Usually my legs always move together not one at a time. So we are hoping that this is a good thing.
The other day we all walked about 3 miles to shopping district, it was kind of cold, but also a very enjoyable walk. We ended up spending about four or five hours in the mall having fun and looking at a lot of interesting things. We left the mall it was a blizzard and we had to walk 3 miles back to the hospital, luckily we have brought scarves and gloves with us. It was a very beautiful walk home, they were letting off fireworks, and seeing them in the snow was very pretty. We all made it home safe just a little bit cold and wet.
I have one more stem cell transfusion on Friday and my last therapy session is on Saturday, and then we will be spending two days in Beijing. I am really looking forward to going home, but I might miss it here a little. Everyone here at the hospital and in public are so very nice and thoughtful. The other night we were at KFC and a young girl came over and told us hello and welcome to China. We always see such interesting things whenever we’re out.
March 3rd, 2010
Let’s see…… We were just leaving the Hotel & wandering down this dirty little street when aunt Cheree noticed a monk sitting on a stoop across the street & we were discussing that when I noticed a card falling from the sky in front of us. Just as I was getting ready to say something I heard Judy start to say something and run over to pick it up. We all searched the sky to see if there was anymore but it was alone there was no other cards to be seen , no rooftops or windows where someone could have thrown them from. So, out of curiosity I spun around to see what she had found and it was a brand spanking new 7 of clubs. There was not a scratch or smudge on the card so we took as a sign (of what kind we did not know). I then had Judy put it in my headrest for safe keeping. I thought that this way I could have it with me at all times! Aunt Cheree was given a handkerchief to place on me in accordance with a scripture out of the bible. So, on the day of my first Spinal Stem Cell Injection Aunt Cheree felt it was time to place the handkerchief upon the back of my neck and pray, Judy felt that we should place the card in front of my neck over my scar and we bowed our heads in silence for 5-10 min. When we removed the handkerchief & card , the card was tarnished in a charcoal color where the scar had been in contact with it. Draw whatever conclusions you see fit but I Felt a sensation of a miracle coming over me! I know keep the card wrapped in the hanky & keep it with me wherever I go.
February 26th, 2010
I know it’s been a while since my last post but we have been really busy with 5 hours of therapy a day & 2 lumbar punctures.
I have made great strives toward my recovery! When I first got here, I could feel sensation down to right in between my shoulder blades & now after only three weeks i can feel sensation to the point right at the bottom of my bra strap. I can now at this point sit up on my own for 50sec. & that’s while concentrating on holding my head up strait which is a workout on it’s own. when we got here i could not sit on my own , after having one spinal treatment that being on sat of last week, I on tue. of this week I was able to sit up for 20sec. & correct myself on my own twice when falling over. Then, on wed. of this week I doubled my time and sat up for 40 sec. without even falling over. Then, I rested for a few & said” lets try that again & I sat up for the full 50 sec. & held my head up ALL on my own. I would have made it longer but after two tries my body got a little tired. I have recently learned to Tighten my stomach muscles, do (my style) crunches which consist of me lying on my back & lifting my head & neck for the count of ten doing three reps. I have also learned to throw a ball, turn myself over front and back (with slight assistance).The hardest thing I am trying to conquer is taking a peg from someones had on the same side as the arm I’m using and hand it back on the other side,using extreme control and being able to hold on the whole time and release when needing to. The other day we were doing this and I was taking it with my right hand and hand it back in front of my chest on the left .So, the therapist had her hand held out in front of my chest & somehow 
my left hand came up and pushed her hand onto the peg & helped out so my right hand didn’t have to work so hard, Hee, hee. Now her & Judy watch me to see if I’ll cheat again! (what can I say, my left hand has been used to helping out my right for two years ,(i can’t be blamed, now can I?). One of my other exercises is to stand for 30-40min. I started out at a 50 degree angle & i have worked my way to 70 degrees. The hardest part was not getting dizzy, I am doing so well that they are raising me 5 degrees every day so I will be used to standing at 90 degrees by the time I leave.
I do have a really odd story to tell from one of our trips into town. we all three decided to venture out and find this Pizza Hut every keeps talking about. Judy remembered it being just a few blocks past the grocery store however every time she had been out this far she had taken a cab. So, it turned out to be just about 2 1/2 miles out. We got there just fine and along the way we saw allot of interesting people like the one man band and the mother praying & singing for cash & the bum asleep on the sidewalk. However, when we got to pizza Hut we realized there was no handicap access. So, we turned around and had a VERY nice lunch at the Century Hotel where aunt Cheree was supposed to stay. On the menu we found DOG for lunch/dinner as well as DONKEY or FRIED DUCK HEAD if you so choose!!!!! Needless to say these were NOT any of the choices we made! Now, here is where the interesting part of this story comes into play……
February 26th, 2010
Today was my first therapy after the new year, and my muscles are very tired. They have been putting me on a standing table, and have me stand up for about 20 minutes, and then they throw a ball at me so I can try to catch it and drove back to them. I am kind of able to catch it with both hands, and then roll it off my arms back to them. One time when I went to throw it back, I had a small muscle spasm and pushed it back into my own face. They are also trying to help me strengthen my abdominal muscles so I can help set myself up. It’s been a lot of work, but also I am already starting to see myself getting stronger. During the holiday I was able to get a couple acupuncture sessions in, and that really hurts. The doctor get my legs and arms jumping, and I have about five needles stuck in one arm and electricity running through them. The doctor seemed really impressed with my nerve responses that I have in my legs, she said the other paralyzed patients she seen don’t nearly have as much response. On Saturday the 20th they are going to try to do another lumbar puncture stem cell transfusion. So I’m hoping it will work this time.
Things are so different here, we cannot buy butter, bleach, or cheese at the regular market you have to go to a bigger market. Judy was going to make steaks the other night, and we thought we thought was garlic cloves, reread the whole package and couldn’t see any writing telling us what was in English. After Judy had season the steak and had diced up the chicken, and put all the “garlic “on the meat our translator came in, and she told us it was fresh Lilly Bulbs and when we looked at the front of the package in bright red letters in English what it was. In anybody wants to know yes you can cook with Lily and it doesn’t taste bad. Yesterday we were at the market, and I noticed a little worried about two or three years old wearing what looked like snow pants, but when he turned around I noticed is whole but was exposed kind of like chaps, and then Judy noticed when he sat down is whole front was exposed. A little while later we saw another little boy that was about three or four years old wearing the same kind of pants, so we’re assuming those pants must be for potty training. My aunt said the other day when she was walking to the store she saw a mom holding a little boy with his back against her and her arm underneath his legs and he was peeing away from her, but she didn’t notice his pants being pulled down, so she thinks maybe he was wearing those type of pants.
We are in a poorer city, so they are not used to seeing foreigners so we always get stared at when you go to the store, and they are even more fascinated by my wheelchair. When you try to cross the street you have to be careful as they will not stop for pedestrians or bicyclists, but cars are afraid of my wheelchair. So I have an easy time getting across the street, but Judy and my aunt have to run for dear life.
February 17th, 2010
I am having a day where I am fighting with my computer and anything electronic, so this update will be quick and I will try to post more in a day or so. Everybody is doing fine, and we’re all really healthy. They were not able to do a lumbar puncture on me, because they could not get between my vertebrae, so we’re going to try again on the 20th. I have some funny stories to share in a couple days.
February 15th, 2010
Yesterday was my first physical and operational therapy, and my first acupuncture session. They are torturing me here!! The acupuncture is interesting they put three needles in each of my arms and each of my legs that may attach electrical wires and run electricity through my muscles causing them to jerk. The acupuncturist is really impressed but I still have such good nerve responses in my legs. In therapy and they put me on the standing table for about 20 minutes, and they also do a lot of exercises with my arms. Right now my arms feel about 500 pounds each. My first stem cell transfusion was done via IV into the back of my hand. My next transfusion is scheduled for Friday, and it will be a lumbar puncture. After the lumbar puncture I will have to lay on my back for six hours. I do have another UTI right now, so they are given me a lot of antibiotics. They do want me to cut back on my anti-spasm medication.
We went to the market a couple days ago and that was a lot of fun, but now my wheelchair is dead and we can’t find a battery charger. Judy went to the electronic small a little while ago to hopefully pick one up. Otherwise everybody keeps pushing my chair, and it is really heavy. We just ordered lunch from KFC, and we are going to get ready to watch a movie. The Spring Festival (Chinese new year) is going on right now, and we can always hear fireworks going off all day long and really lay into the night. The big celebration will start next week, and I will have very little therapy during that time so we are hoping to get out of hospital to see things. We are also looking forward to trying to rent a van after the Spring Festival to go to Beijing one day. Everything is going very well here, and we’re having some fun.
February 10th, 2010
We arrived here a day and a half ago, but we have been really tired and trying to get settled in. The flight here was long and very eventful. On the flight from Las Vegas the assistance team actually dropped me between two rows of economy seats and I was wedged under the seat for a little while. Once they finally got me out I flew from Las Vegas and San Francisco laying down across three seats. Once we boarded the plane in San Francisco had to Beijing, I was not able to get into the seat that they assigned me because it was not handicapped Accessible, so they moved Judy and I up to business class, but unfortunately my poor aunt was left in economy seating. I do not start my first therapy treatment until Monday morning so I will post more after that.
February 6th, 2010
