This morning was rounds day when all the doctors came to check on Linda. They pulled and probed and asked a bunch of questions and seemed satisfied everything was going as planed. For the last few days I see no change in Linda, she still is doing pretty good. So after the doctors left, Jo, the woman next door from FL. asked if I would go to walmart with her. I said sure, so off we went in the taxi. I had gone the day before so I didn't need anything so I went out to find a Subway that I saw a big sign for. I told Linda maybe I would bring her back a sandwich from there. But all the big sign was an advertisement for Subway, so I never found it. But I did find a Dairy Queen, so I bought a blizzard for Linda. When I got back Linda was sitting in the chair looking like death warmed over. What happened to you I asked, it seems one of the iv's they gave her was potassium and it burned pretty bad going in. But she seemed OK, so I showed her the blizzard and she thought that was the best thing she saw since getting here. In a minute the blizzard was gone, in another minute Linda turned green and up came the blizzard along with everything else. I called Amy and she came right away checked Linda over and told her to rest for a while. Than Linda was fine. But the blizzard was gone.
A few people have sent questions about what the actual operation was like. I have gone into the CT scan, and the MRI and how they merge the two together to find the exact spot to place the cells. Linda stays awake the whole time. First they numb the scull and than cut a flap in the scalp. One hole, maybe less than 1/2 inch is drilled and than with the aid of the computer 4 different areas receive the cells. The whole procedure takes about 2 hrs. Linda is than brought back to the room and had to lay flat on her back for 6 hrs. There was no pain at all during the procedure and none from the scalp incision. She was awake the whole time and talked to the doctors. After 6 hours Linda was able to get up and walk to the bathroom and sit in a chair. The next day she could walk around the room but she was not allowed out of the room for one week, the doctors said that was because of the risk of infection with the hole in her head. She has iv's everyday she has been here. Right after the operation it was 7 hrs worth. The physical therapy goes on every day. The therapist comes to the room as long as Linda can't go to them. Now we just have to give it time.
As for food, there is a cafe here in the hospital Ding comes and takes our orders, and will do specials if we want. The food is cheap and pretty good. If we don't like that, another lady from an outside restaurant also takes orders. Also out on the street are a number of people cooking all kinds of things. I go and get things from them also and they are pretty good. I am more adventuress than Linda in the food department I bring home things and she says yuk, and eats cheerios. But she is trying more things. I like to get out everyday and explore. I have a bike from the hospital, but it has been really cold here so I am not riding it much. The other morning it was 14 degrees F. That does not stop the Chinese, they ride in all kinds of weather.
The big storm is south of us. We have had a little snow here but not too much. But this storm is really causing problems. This is the biggest holiday of the year and everyone goes home. But now everything is at a standstill and the airports, train stations, bus stations and highways are just filled with stranded people. The electric lines are down and no food is being delivered, and on top of that, some towns have a million extra people stranded. But they are handling it. No looting, no riots, no raping, not like New Orleans.
Before anyone buys tickets and jumps on a plane, wait till we get back and see what the longer term holds for Linda. As we said, this is an experiment. There are 4 more parkies here now. But they are all getting lumbar injections and you don't see results from that for a while. We are watching.
john and linda in China
Friday, February 1, 2008
Tuesday, January 29, 2008
Check out Parkinson's Disease News
I just was sent a link to a web site:
http://viartis.net/parkinsons.disease/news.htm
that talks about stem cell treatment not being a cure for PK. The article says:
http://viartis.net/parkinsons.disease/news.htm
that talks about stem cell treatment not being a cure for PK. The article says:
THE RESULT OF STEM CELL SURGERY IN CHINA
On 7th January 2008, Linda and John Fratcher arrived in China in order to have stem cell surgery to rid Linda Fratcher's Parkinson's Disease. For years it has been claimed by some that the use of stem cells would be the cure for Parkinson's Disease. In China and elsewhere, due to there being fewer restrictions, stem cell surgery is already being carried out. The stem cell surgery operation on Linda Fratcher has now been completed. However, she still has Parkinson's Disease, and is still having to take Sinemet. They are continuing to detail what happens to her after the operation day by day in a blog titled "Linda and John in China", which is on the Parkinson's Rebels web site. For more information go to Linda and John in China. Despite a number of people having undergone stem cell surgery for Parkinson's Disease, nobody has been cured of it. Every patient has returned from stem cell surgery in China with Parkinson's Disease and is still being treated for it. Reductions in patients' Sinemet have often been due to it being replaced by Mucuna Pruriens, which is a natural form of L-dopa. For more information go to Stem cells in China.
Who ever wrote this article never checked with me or any other person coming back from China. This hospital and the directors and the doctors and the staff and no one any where around calls this a cure for PK. Right in the information the hospital sends out, when you email the hospital for info the first thing they tell you is this is not a cure, they want to make that very plain right up front. When you first ask for info from this hospital the first person you reach is Kotan. Kotan tells you first thing this is not a cure. So if it is not a cure what are we doing here.
Parkinson's is a neurological disorder of the brain where the transmitting capabilities of the nerves to commutate with each other break down and get progressively worse as time goes on. The chemical the brain uses to commutate is called dopamine and Parkinson's patients lose the ability to produce it. That is where drugs come in and sinemet is the gold standard. Sinemet has been around since the 60's and most drugs used in the treatment of Parkinson's use some form of sinemet. As of now there is no cure for Parkinson's and no one of any repute makes that claim. So what's going on here? In the 1990's in the US a pharmaceutical research lab did a trial of 6 Parkinson's patients. Eye retina cells were grown and make stem cell from them. They were inserted right into the brain and lo and behold, the symptoms of PK became much less. There are reasons for this we won't get into here. the results were given to the FDA and they put it on the fast track. And there it sat. A second trial was preformed and again good results. And there it sat. Why we haven't been able to figure out. This is what the hospital in China offers.
Over a year ago I read an article about a woman who went to China for treatment and her symptoms improved greatly. This was the first patient to come to China for the treatment. I called her on the phone and we became friends. This last fall I flew out to meet her in person and was impressed with her condition. Lets just say it was good. I also contacted just about every one who had the treatment and everyone of them said they benefited from it and would do it again. The person who wrote that article never talked to one person.
So what do we expect to get out of treatment. Not a cure. We know that. As of now there is no cure. But we are looking for reduced symptoms and a better quality of life. If we get that than the trip will be worth it. There are no guarantees in life and none here. The only guarantee is if we do nothing we know where that leads.
john and linda in China
Just Waiting
Not a lot to report on Linda's condition. Just very small changes that I can pick up on after 12 years of PD. So far its small steps forward, and no steps back. If this is all the better she got, it would not be that bad.
Yesterday Diana and Kamee came down about 9 AM and asked if we would like to be interviewed by CNN. They were coming to the hospital to do a story on stem cells. We said sure so they said they would be here about 10. So Linda took out her 4 hats she had with her and her and the girls tried each one on and talked about which one looked the best with what. I had on a pair of jeans with a hole in the knee and didn't even think of changing for the interview. But they went on changing hats and turning jackets inside out to see how that color would look on TV. And after all that CNN never showed. They said maybe today. I still have the holey jeans.
Last night Amy came in to see how Linda was and to chat. Amy tells us she is just a shy little Chinese girl with black eyes and black hair. I think she is a real doll and would love to take her home. She went into her medical training and told us about working with rats and putting them in a smoke chamber to see how tobacco effects the brain. Linda asked her if the rats were little cute white rats. Linda watch's too much Disney. Amy said no, they were big with long teeth and wanted to bite you if they could. She didn't think they were too cute. Than Amy asked us if it would be OK to ask about what some of the words she saw in an American movie meant. The only English she knew is what they taught her in school. Like you never say to a black man he is a Negro. So how do you tell a black man he is black? I told her the black man knows he is black just as I know I am white and you don't have to tell either one of us anything. She has never met a real black man so how should she act. I told her just act like any other man she meets, they are no different. OHH. Than she got into what this word mean, she must have seen a R rated movie, because they were some pretty raw words. I told her they were rude words that she must not use with other people. Well than how come Americans used them all the time. Linda and I told her that was just in the movies and we didn't use them at all. When I told her what some of the words meant her eyes got big and her hands came up to her open mouth. So I don't think she will use them after that.
Amy said there a few foreigners in Beijing, but when you get out to the little villages in the country most have never seen a foreigner. She said I would be like a rock star and every one would crowd around me just to hear English being spoken. She asked what accent I had and I told her I didn't have an accent, if other people sounded different, they had the accent. I don't know if that went over her head. She tells us she likes to hang out in our room because she can be just like a girl, with Chinese patients she must have a stern face because that is how Chinese doctors are supposed to be. I have seen her in the hallways and she is a stern doctor, but I like her much more as a girl.
More to come, john and linda in China
Yesterday Diana and Kamee came down about 9 AM and asked if we would like to be interviewed by CNN. They were coming to the hospital to do a story on stem cells. We said sure so they said they would be here about 10. So Linda took out her 4 hats she had with her and her and the girls tried each one on and talked about which one looked the best with what. I had on a pair of jeans with a hole in the knee and didn't even think of changing for the interview. But they went on changing hats and turning jackets inside out to see how that color would look on TV. And after all that CNN never showed. They said maybe today. I still have the holey jeans.
Last night Amy came in to see how Linda was and to chat. Amy tells us she is just a shy little Chinese girl with black eyes and black hair. I think she is a real doll and would love to take her home. She went into her medical training and told us about working with rats and putting them in a smoke chamber to see how tobacco effects the brain. Linda asked her if the rats were little cute white rats. Linda watch's too much Disney. Amy said no, they were big with long teeth and wanted to bite you if they could. She didn't think they were too cute. Than Amy asked us if it would be OK to ask about what some of the words she saw in an American movie meant. The only English she knew is what they taught her in school. Like you never say to a black man he is a Negro. So how do you tell a black man he is black? I told her the black man knows he is black just as I know I am white and you don't have to tell either one of us anything. She has never met a real black man so how should she act. I told her just act like any other man she meets, they are no different. OHH. Than she got into what this word mean, she must have seen a R rated movie, because they were some pretty raw words. I told her they were rude words that she must not use with other people. Well than how come Americans used them all the time. Linda and I told her that was just in the movies and we didn't use them at all. When I told her what some of the words meant her eyes got big and her hands came up to her open mouth. So I don't think she will use them after that.
Amy said there a few foreigners in Beijing, but when you get out to the little villages in the country most have never seen a foreigner. She said I would be like a rock star and every one would crowd around me just to hear English being spoken. She asked what accent I had and I told her I didn't have an accent, if other people sounded different, they had the accent. I don't know if that went over her head. She tells us she likes to hang out in our room because she can be just like a girl, with Chinese patients she must have a stern face because that is how Chinese doctors are supposed to be. I have seen her in the hallways and she is a stern doctor, but I like her much more as a girl.
More to come, john and linda in China
Sunday, January 27, 2008
Sunday Morning
Sunday morning here and not much to report. Linda is feeling very good, no headaches or any soreness after the operation. When I call her name she answers so she knows who she is. After something like what she just did, having someone stir around in her brain, you can't be to careful. I am watching for any change to her condition good or bad. Here is what I see. Linda used to get up in the morning and be somewhat OK until about 10 AM when she would take her first sinamet. Than it was downhill after that. After about 45 min she would start to get pulling and stiffness and would feel blah. The rest of the day would be the same. Her on time would be maybe an hour and than off again.
Now as I watch her I am looking for her off time. If she has any I don't see it. She looks to me to be about the same all day. She seems to have more (diskinasia) ? in her left leg and her face than before. This morning we asked her doctor about that and the doctor says she sees that all the time. There is more dopamine now than she needs so they are going to start cutting back on her sinamet. I have spent more time with Linda in the last 3 weeks than ever before and I ask questions to make sure her mind is OK, but when she gives me flaky answers, I have to remember she was always like that. So I guess she's OK.
This morning her doctor came in and asked how she was, checked her dressings, and gave her a quick look over. She seemed to be satisfied. Than a little later her surgeon came in to check her. He also asked a few questions and he also was satisfied. Just before we came here we read an article about going to China for stem cell operations. The author of the article wanted to put his point across that it was a waste of money and no good could come from it. They used Penny Thomas as an example of some one who was deluded. Well before coming to China Randy and I went to Colorado to visit Penny first hand and were impressed with her condition. We also talked with a great number of others who had been here. The author of the article never checked on anyone and we did, so we knew he was full of it. The doctors here are top notch and believe in what they are doing. There were 6 doctors and 4 nurses in the operating room working on Linda she had great confidence in them. I also feel they are top notch. So what ever the outcome of this is, we don't feel duped. Now we just have to let time and the little bugger stem cells do their job.
john and linda in China
Now as I watch her I am looking for her off time. If she has any I don't see it. She looks to me to be about the same all day. She seems to have more (diskinasia) ? in her left leg and her face than before. This morning we asked her doctor about that and the doctor says she sees that all the time. There is more dopamine now than she needs so they are going to start cutting back on her sinamet. I have spent more time with Linda in the last 3 weeks than ever before and I ask questions to make sure her mind is OK, but when she gives me flaky answers, I have to remember she was always like that. So I guess she's OK.
This morning her doctor came in and asked how she was, checked her dressings, and gave her a quick look over. She seemed to be satisfied. Than a little later her surgeon came in to check her. He also asked a few questions and he also was satisfied. Just before we came here we read an article about going to China for stem cell operations. The author of the article wanted to put his point across that it was a waste of money and no good could come from it. They used Penny Thomas as an example of some one who was deluded. Well before coming to China Randy and I went to Colorado to visit Penny first hand and were impressed with her condition. We also talked with a great number of others who had been here. The author of the article never checked on anyone and we did, so we knew he was full of it. The doctors here are top notch and believe in what they are doing. There were 6 doctors and 4 nurses in the operating room working on Linda she had great confidence in them. I also feel they are top notch. So what ever the outcome of this is, we don't feel duped. Now we just have to let time and the little bugger stem cells do their job.
john and linda in China
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