Archive for September, 2006
Dave was having a massage at this wonderful place in ShenZhen, and his left hip was really bothering him, and he was uncomfortable for at least a week, so he booked a massage before he had his last lumbar puncture because he knew he would be still having to lie flat for 6 hours. During his massage he realized that all of a sudden he was actually rubbing his own hip!! I actually wasn’t there to see it myself, but Dave couldn’t wait to tell me about it when he saw me. Dave was thrilled to say the least, he couldn’t stop talking about it! Things are so suttle when you realize they are happening and they are things Dave used to do, and hasn’t done them since the injury. When he does them, it is like wait a minute, did you see that? You have to validate what you saw, because it is so suttle you almost think that it didn’t happen. Dave just beams like a little kid when he realizes he has done something new.
Dave has worked very hard in rehab, and his determination is making him push himself more than I would have imagined. He works very, very hard in therapy, but the benfits are paying off for him for sure. It seems that the standing board is the hardest for Dave, and makes him the most sore. His feet, legs and hips ache, and I believe that it is due to the stretching and use of all those muscle, joints, tendons and ligaments that he hasn’t used in 4 1/2 years. That is why he was having his heavenly foot massage again.
We all feel that the best thing he can do for himself when he returns home is to continue the diligent therapies and rehab. on a daily basis like he is doing here. That is the biggest hurdle for him when he returns home. If you have a chronic problem, you are limited by the number of rehab. treatments you are allowed, and this is the biggest hurdle all people face like Dave. The stem cells need a chance to lodge where they need to be and grow, and regenerate where they will. Dave will continue to see gains once he returns home, and not just here in China. The key for everyone with an SCI injury to keep their muscles and joints from stiffening, wasting and contracting is the daily rehab. and treatment modalities to be continued. I cannot stress that point enough. David’s combintation of therapies has proven that fact in this trip here to China. Some of the rehab. is just back to the basics that everyone can do on their own if they stay motiviated and make it part of their daily rountine, So to all of you out there who are waiting until you can have stem cells, get yourself on a regular schedule of exercises daily. Have you care givers assist you to do the things that you cannot do on your own, and make this part of your daily routine. Strengthen everything you can and build your core and even with that you will notice big gains. Stay motivated and focused, because the benefits you reap will be worth the effort. If there is anything we have all learned from this trip to China, it is the importance of using basic eveyday exercises to build yourself back up. You will not only benefit physcially, but you will benefit emotionally. Never give up hope, ever.
September 25th, 2006
Dave seems to have leveled off a bit and has definitely seen some suttle changes. Some of the changes that he has noticed that are just more suttle are as follows: he feels his breathing is stronger, his voice is stronger when he speaks and he also feels general over all improvement in his core strength. He is still dealing with his vision fading in and out where some days he sees better than others. I think this will be the case until things level off a bit. He is able to lift his hands up to his chin from a sitting position which he was only able to do from a reclined position before. He can now use his hand to rub his own hip when it bothers him. To us with full mobility, we do these things unconsiously. To those with these disabilities, these are major leaps and bounds. We all believe that all the modalities, and David’s hard work, along with the stem cells has made all these improvements possible. David will be leaving on 10/2 to return home. That is just a week away. He had another IV stem cell treatment on Monday, and he will have 1 more L.P. stem cell treatment on Sat. That will be his last. He will return home and continue all the rehab. on a daily basis to improve his on going progress. We knew when we travelled here that there were not guarantees, everyone is different, but David has worked hard, the modalities are a comibnation of things that all seem to work if the person participates at their full capacity. Like Dave’s friend Bonny said, “Your altitude depends on your attitude”, and she sure was right. Will do another post in a few days so stay tuned!
September 25th, 2006
Hello everyone,
Dave’s eyesite continutes to improve. He does have days that are a little more off than others, where it seems his vision is more hazy than others, and some of this seems to be when he is more tired. We haven’t quite fiugured it all out, but he definitely sees better and can read so many things! It is just amazing!
Dave welcomes all emails and I even print the comments from this blog for him to read. The responses are so heartfelt and everyone is struggling with all the issues that Dave struggles with, with this disabliltiy. Any treatment offers hope to all.
Please be sure to make the font larger so that Dave can read them himself!!
Yes, that is what I said! David is now reading his own emails.
Dave’s eyesight since the last email has just progressed. Let me explain, originally, he could see. but said that his vision was inconsistent. It seemed to be clear then would get fuzzier. He has had an eye exam, and his vision is great! He does need reading glasses, but he just seems to be improving with time! It is such a gift, and it was one of the hopes Dave had before he came. He feels he will now be able to use the computer, and because he will be able to see the screen. Won’t it be fabulous….. the first email we all receive from him…..I am sure all of you cannot wait. Dave’s eyesite improving will make his quality of life so much better, and that is one of the things we had hoped and prayed for.
David had his 3rd Stem Cell on Tuesday. It was much easier than the rest because this one was by IV, and there is no down time. Dave received the IV sitting in his wheelchair. The IV circulates through the blood stream to all the major organs. There are a minimum of 10,000,000 stem cells in every injection! Think of all the organs those can travel to by IV!
When he receives the lumbar puncture, the stem cells are in the closed spinal fluid system inside the spinal cord and are hopefully concentrating on the areas of the brain that may have suffered anoxia, and the areas of the spinal cord where the signals are crossed, and lodge and start regenerating in the areas of need in his spine. Dave’s next stem cell treatment is via lumbar puncture again. He will receive a total of 6 stem cell treatments before he leaves to head home. 4 will be by lumbar puncture and 2 via IV, totalling 6. It is a tight schedule, but it seems that they will all be fit in before Dave has to leave! Thank you to Jon and all his wonderful staff for making that happen for Dave.
There are a couple of more things that have happened to Dave that are very positive. He is gaining more core strength, and was able to lift his hips up off the rehab. table. He has NEVER been able to do that. He was so pumped after he realized he had done it!( Leta Sharkey was there with her friend Mary Beth to see the whole thing too. She travled here from the US to see the miracles going on here in China.) We got that one on video too! Another improvement Dave has noticed is that he can move the fingers on his left hand more, and he can feel warm things! He could feel the warm face cloth at dinner last night, they gave us to wash our hands. That was the first time he realized that change. Norma had put the cloth on his hand and he could feel the warmth! Today when Norma was getting him ready to head to Rehab., he put his hand in the warm water and could feel that it was warm too!! He is thrilled. Things are so suttle and it seems that you just seem to all of a sudden notice them ,one by one.
National Geographic did come and interview Dave and he did a fabulous job. We were very proud of him, and I did video them taping Dave. The documentary will be out in about one year from now. I am sure Dave will let you all know when it will air on the National Geographic channel. The producer gave Dave a bouquet of Lillies, and 2 containers of yummy cookies too! She was great, and Dave could see her too!
Who would have thought even one year ago this would all be taking place, half the world away. Dave admittingly told N.G. he was a bit of a risk taker, and this is one risk that was definitely worth taking!
Just think what the potential is, and what the future holds, for many diseases, and chronic problems like Dave’s. The possibilites are endless………….
Thank you for all your thoughts and prayers………the prayers are surely being answered from our perspective!
I am sure Dave is anxious to get home and tell all of you, all the wonderful things that I can not possilby share in an email. Good thing Dave has call waiting! I think he’ll be burning up the phone lines when he gets home!
Blessings to you all, and thank you for your encouraging emails, your thoughts and all your prayers,
September 25th, 2006
Dave is now reading his own large print emails from friends and family! He is so thrilled! He hasn’t been able to read in 41/2 years. He reads slowly of course since it has been so long, and his brain needs to reconnect but wiith practice this too shall improve. It is just amazing that he is reading at all. He really read very well, and of course we captured it on video and with still pictures. Some of the changes are so suttle that they really can go unnoticed at first, such as the decrease in pain and spasms. You realize during one of the transfers that the spasms are less. Then you start realizing that the imrovements are more than you realized or even hoped for. Dave’s eyesight improving was a big hope for him, and he is hoping for continued improvement with time. His independence depends on his visual capabilities with his other disabilities, so pray for the best. Never, ever give up hope. More to come in the next several days, but didn’t want to wait to advise others of this change!
September 17th, 2006
Hello everyone,
It is now day 14 for us here in Shenzhen, China. We have been quite busy with therapy and just getting to know China within
September 13th, 2006
Hello everyone!
Wow, have we got a few things to share in this blog! David has been having rehab twice a day which includes massage, accupucture, exercise, occupational therapy, standing board etc. Very much hands on treatment here in China, something that has been lost in Western Medicine, and technology has taken over.
Well, Monday, 1 hour before his first stem cells he was reclined in his wheelchair, and Norma and I were sitting in his room chatting. All of a sudden David sat straight up in his chair from a reclined position! Norma and I looked at each other and I ran over to David and his eyes were bugging out of his head! Out of the clear blue he just sat straight up! He scared himself! It was so amazing! David can do a forward bend from a sitting position in his wheelchair, but he has never been able to do a sit up from a reclined position! After we all got temporarily over the shock of it all, Norma and I ran and grabbed the video and the still camera and said David, do it again. He did! Over and over. He wasn’t able to go as straight as that first time but he did it. In rehab. the last 2 mornings he has done it on the flat rehab. table over and over and sits straight up! He is also turning himself with assistance onto his side.
I am telling you there is something that wants to wake up there!
He had his first stem cell treatment about 3:30 on Monday 9/4 and he had to lay flat in bed for 5-6 hours. He did well. His back was sore because he had a lumbar puncture, but other than that we have seen no side effects.
We realized also today that David is having minimal if any lower extremety spasms. Used to be any time we moved him around he would spasm without fail. Even on Baclofen. Those spasms have nearly stopped! David also says that his pain is 50% less. He needed pain medication at least 2-4 times a day. Today, he didn’t take any!
Sometimes the changes seem so suttle, but they are there. With all the combined therapies offered here, it is definitely a winning combination of therapies that seem to be working for David. David works hard in therapy when he is there, and he is benefiting from it all. It is too early to tell just what is happening but we are on the cutting edge and breaking new gounds here.
They had Dave stand on the standing board, and he loved it. He smiled the whole time. He said he could breath much better, and it just felt good. He was a little sore tonight because he is not used to it. We had to leave his shoes on because his lower extremeties are very weak, and his ankles want to turn. Dave had the sensation that he could stand, even though he could not really feel if his feet were totally flat. He loved that sensation of standing and what a great thrill. Those of us who stand just take it for granted.
Dave went to the park beside the hospital where he basked in the humid and hot ShenZhen sun, and he loved every minute of it. Norma and I were dying from the heat, but old Davey boy just couldn’t get enough of it. It was nice for him to get outside.
So many little stories to tell, and I am sure Dave will fill everyone in when he gets home.
Best wishes to all!
September 8th, 2006
Hi,
Very busy day here with David. He had another chinese IV medicine therapy, his first shower in the tiny shower chair ( made for the narrow small chinese people), and OT, PT Accupuncture and massage! David said that his legs always feel dead and cool, but at the end of the therapies he said they felt dead and warm.
He also felt like he had the sensation that he could walk. He tried in his wheelchair, but could not, but he had still had that sensation in his mind. There is something that wants to wake up there!
After the busy day we were all anxious to get out of the hospital and try something new so we went to eat at the 2nd floor restraunt here at the hotel. Grace recommended it because the chinese food is authentic, good and they have fresh fish. We had grouper that you share, they cook the whole fish. MMMMM…..It was very good and the service was great. There was a chinese wedding reception there too and they were playing white christmas! It was so funny. Dave, Norma and I really had a good time getting out of the hospital.
We are getting more oriented to our surroundings in the hospital and finding more things available to us now that the move is almost finished from the 19th to the 14th floor.
Everyone is off tomorrow, except the nurses so it is a day of rest for everyone.
They are going to give Dave his first stem cells on Monday instead of Weds! We were thrilled to find that out today. Norma and my gut tell us that we think David is going to notice a good result from this. He has the right mind set and he wants it so bad.
Everyone is still a little amazed at him due to his size, and his ever present electric wheelchair.They are in awe of it all. They are starting to get more used to him, and the pieces are all starting to fall into place for everything. By talking with Grace, Liz and Amy the pieces of the puzzle all fall together very well. Everyone here bends over backwards to make you comfortable and to inusure your needs are met. You easily settle into a new rountine and temporary life here in ShenZhen
Having Norma here keeps Dave calmer and more self assured, about his unfamiliar surroundings. He has done quite well I must say. It will be interesting to see how the stem cells go. He has to lie flat for 5-6 hours after the lumbar puncture, and that is tuff for him to do. He gets so stiff.
The culture here is so different from America….We have so much and we waste so much too. We take for granted all the things we have. It is amazing how the chinese all do well without all the “stuff” we all have!
Going to sign off for now, but wanted to give everyone the run down for today.
Dave sends his love to everyone.
September 8th, 2006
Hello!
Here is the first update from ShenZhen!
We arrived safely in Hong Kong as planned. We were met by our driver as promised when we arrived. Grace had made the arrangements and the driver was there with the sign with David’s name on it just like she said. The employees at the Hong Kong airport were very helpful. They helped us until we had lifted Dave into the van, and were safely on our way.
The trip from Hong Kong to ShenZhen by car was beautiful. Hong Kong is nesstled in the valley at the bottom of a mountain range at the base of the ocean. Green mountains all around and blue water…clean and everyone very professional and helpful. English is a language spoken there.
Just a little about the arrival at the airport before I continue and forget. Our arrival at the airport was easy and seamless. We had 2 vans due to all our luggage and David’s 2 wheel chairs. David was lifted into the van by 4 of us, and it is the first time he has sat by himself in a van on the seat with just a seatbelt and not a wheelchair since his injury! We were then off to ShenZhen. I have a picture of Dave sitting in the back seat! He looks shocked and amazed!
ShenZhen is a very large city with 10 million people. We arrived at morning rush hour when you see everyone packed into buses, women walking on sunny days with umbrellas, bicycles everywhere with baskets, and large bottles of water on the back. It is like old city/new city all mixed into one. ShenZhen is a bustling city…and a typical city. Big city smells…..many to say the least! It is extremely warm and humid even early in the morning and early evening, and just plain hot in the middle of the day.
The hospital is located in the city center. The stem cell unit was moving the day we arrived from the 19th floor to the 14th floor due to the rapid increase in growth within the last 9 months. David and Norma’s room was not quite ready due to the move, but I must say the Chinese know how to get things done when they can understand what you need. The first 24 hours was a little different due to the language barriers, and cultural differences, but you adjust and that is just something that time and interaction seem to manage. Jon, has hired 5 very capable employees, who speak English and translate for us. I had bought a chinese/english dictionary, and we have learned to have the chinese write the phrases or words we need on index cards and we show them to the chinese when we need something when translators are not around and it has worked quite well. In the United State you can purchase the book at Barnes and Noble. The Chinese love the dictionary and always want to look at it. They chuckle when they see me pull it out of my purse and communicate! It just works!
David is a quad. c3-c4 who was injured on 5/25/02. He is an imcomplete injury. Initially he was on a ventilator for 9 months and successfully weaned off the ventilator and had his Trach. removed thanks to the weaning program at Craig Hospital.
David had his evaluation by the Dr. about 1 hour after we arrived. They were impressed with how much he has maintained and gained in the 4 years since his injury. They are hopeful with aggressive rehab that they can help David to stand. They did advise him to lose weight while he is here so that his legs can hold his weight more easily. Yesterday we were all exhausted by 6pm after the long flight and all fell asleep by 8pm.
Today, I ventured off to Walmart Super Center with a Chinese employee to get David the extras supplies he needed. While I was gone, he and Norma ventured out to lunch and then David was off to Occupational Therapy, and lab testing, EKG, and an EMG. He had a one hour IV of traditional chinese herbal medicine that is supposed to build up the support system for the stem cells. He will receive his first stem cells on Weds. our time, by lumbar puncture. They have to prepare the stem cells specifically for David. They are fresh not frozen stem cells. If he does not develop any side effects he will receive another treatment on Monday and Friday for example. It all depends on how he does. He has therapy everyday, except Sundays. Sunday is the Chinese day of rest.
What is amazing is that there are at least 4 other families here from the US, all with children of different ages and diagnosises. Norma and I could not beleive all the children in the rehab room. Usually you see, older people in there. There are alot of children here with different problems. There were 2 spinal cord injuries here but one left several days after we arrived. There is another spinal cord injury patient still here who extended his time hre by another month. When you look into the eyes of every patient and family here, they are all so full of hope. There are people here from everywhere. The word is out…..HOPE LIVES HERE.
Tomorrow is Saturday, and David will have his physical therapy, massage, accupuncture and occupational therapy. He is doing very well, and sends all his love to everyone, and thanks you for your prayers and support.
We hired a chinese male helper for Norma and that has made her life easier with the activities of daily living for David. He is smart as a whip and catches on so quickly. The language barrier is one that you can work through very quickly and set up a great routine.
Changes for some are greater than others, but everyone leaves here with something. They all come with hope and that hope becomes more reality than ever when they return home.
September 8th, 2006
