Sunday morning and we just got up. The cleaning lady is moping the room and cleaning up, they come in twice a day. Linda tells me she is feeling good, but a little stiff and her balance is off. Yesterday we walked again and I think we are going to have to walk everyday. Linda was laying down for almost 2 weeks and she shows it. So out again today.
Problem is the air around here. The air is so dirty you can taste it. You can feel the grit on your teeth. You can see the gray everywhere. Looking up the Sun looks like you are on a foreign planet. There are no clouds in the sky but the sun is so faint it looks twice as far away. And dim. Clouds of pollution. So dismal. And cold. People walk all huddled up and wear masks to filter out the large partials. I wonder how they can clean up the air by summer when the games begin. I can't even think how bad it would be trying to run a marathon wearing a mask. Steve if you brought one of your air quality monitors here it would peg it and you would not get any readings. So I think I made my point, the air is dirty here.
But the good news. All the email we have been getting from our friends praying for Linda. Our Jewish friends, our born again friends, our Catholic friends, even our agnostic friends. I wrote to another friend that if prayers were stepping stones, Linda would be half way to heaven by now. Sounds like the name of a song. But really, we can feel the warmth and love come thru from way off yonder. Prayers come in all forms, from the formal to the best wishes and Linda feels them all. When I read the next one to her I can see her sprit raise a little more. So thank you all.
Being the firefighter in me, I was wondering how the fire dept would respond to a fire around here. The alleys are so narrow a truck could never get thru. Maybe a small pumper might. So than I put my fire prevention hat on and did an inspection of the hospital. This Don, you won't believe. No sprinklers any where in the hospital. And Ross, no standpipe or outside hook up. Than to make things worse, I went outside to find the nearest hydrant and could not find one. So than I checked the room for escape routes. Lucky the windows open, so I gave Linda instructions on what to do if we smell smoke. Open the window and slide out to the ground and than get away from the building. So now as long as we are here I am my own smoke detector and am on constant alert.
As I write this I know Randy is in the air going to Germany for a different type of treatment. Being hooked up with the Parkinson's support group and living with Parkinson's for the last 10 years have changed my thinking. When I say living with Parkinson's even though I am not the one with it and my wife is, every care giver out there will know we both are living with it. So I find myself thinking about Randy and all the other parkys out there and hoping for the best.
john and linda in China
Slideshow Follows:
Saturday, January 19, 2008
Friday, January 18, 2008
CHINA 2nd Week - More News
Little bit of a set back yesterday. Amy wants to cut back on Linda's med's a little so she wanted to substitute her sinamet with some of their sinamet. And also cut back on the dose. This morning the first thing I saw was Linda was hunched up again. And she was feeling pretty bad. So I called Amy and she came right down and I showed her Linda was regressing. When you live with a parky you notice any small change right away. And most of the time it is for the worst. So Amy questioned her about how she felt, checked her reflexes and told her to take half of her sinamet along with the hospital med's. A little later Amy along with 6 other doctors including the head of the hospital came to the room and checked on her. This is a small room and there was no room to get around with all the white coats trying to get around the bed. They were satisfied they were on the right track and off they went. And this afternoon Linda was feeling well enough that we went out for a walk around the neighborhood and on the way back bought some fruit at one of the street stands.
A couple of days ago the nurses took a EKG on Linda to make sure she would not die on the table when they were poking around in her brain. They saw something that made them ask questions about chest pains, no, shortness of breath, no, other symptoms of heart problems. By this time Linda was having all the symptoms they were talking about. Amy had to come back and stay for an hour with Linda reassuring her they were just making sure she was ok before the operation. Then they took another EKG last night and sent a cardiologist to look at it and she said just to be sure she is setting up a ultrasound for to look at it. She said this was just a precaution and there was really nothing she could see that Linda was in danger. Amy was telling us last night about her husband working in Washington State working for Bill Gates and making 70 thou a year. She said of that a third went to taxes. I asked her what a doctor makes in China. She is a board certified Nuro and she makes 400.00 US dollars a month. I asked why not leave and go elsewhere. Some of the directors do, but she is a run of the mill doctor and with her limited English she would have a hard time.
ANOTHER TRIP TO WAL-MART: Today was another walmart day to stock up on food supplies. I really want to ride my bike to the store but it has been so cold here and yesterday it snowed a couple of inches so back to the taxi. I have had some white knuckle rides with Steve Rider, but these guys make me shut my eyes. Red lights and stop signs are just suggestions for these guys. So one hand on the horn and two speeds, on and off.
I learned a hard lesson in the walmart today. First you have to know that for every one job in the store, they have 6 people to do it. So many blue vests running around almost as many as shoppers. I had bought a cam video for the computer last time I was there and it didn't work. So I wanted to return it and get another one. As I went into the store the greeter at the door put a red sticky on and checked my recite and wrote up a paper. Than I went shopping and filled my cart with milk and fruit and bread and what else I needed. Than it was time to go to customer service and return the video cam. Finding customer service is a little hard when everything is in Chinese, but I saw a line with people standing so I thought that must be it. Sure enough, when I got to my turn the first guy looked at it and through sign language I got the point across that it didn't work. So this guy looks at the red sticky and the recite and than puts a blue sticky on it. He than passes it to the women next to him who looks at it and the recite, than takes off the blue sticky and the red sticky the guy next to her had just put on. Than they call one of the many workers who are standing around and she takes me down to the department with the cam to find another one. there are a whole roll of them but some do not have the same code numbers on so she has to go thru the whole pile till she finds one with the same date code on it. Than back up to the service counter where the crew up there checks it out again, than they put the red and blue sticker on it, put it thru the anti magnet so it won't set off the alarms, put it a bag and seal the bag and hand it to me. So now I have to check out, so I look for my cart that I left in customer service and damm if they didn't take my cart because they didn't see me so they put everything back on the shelves. I had to go back and refill it and I forgot a few things I had in the first one.
There is always something to see at the walmart. The fish dept has really fresh fish. There are big tanks with the fish swimming around along with turtles and crabs and things I never saw before. As I am watching, a guy is picking out a fish he wants. A clerk gets a big net and scoops out this fish. But the fish had other ideas, so he jumps out of the net and flops along the floor with the girl clerk chasing him and people stepping out of the way. When she catches him the fish is about a foot long, she grabs him like a club and bangs his head on the counter. That takes the fight out of him, than she throws it to a guy with a big cleaver who takes the head off the fish, guts it and skins it before it stops jumping around. I have a nice picture of the fish jumping on the floor.
There are a few pics of Linda here, check out her face, see the mask lifting.
john and linda in China
.JPG)
Linda and Friends.jpg)
Wal-Mart Fish Market
The One That Got Away
A couple of days ago the nurses took a EKG on Linda to make sure she would not die on the table when they were poking around in her brain. They saw something that made them ask questions about chest pains, no, shortness of breath, no, other symptoms of heart problems. By this time Linda was having all the symptoms they were talking about. Amy had to come back and stay for an hour with Linda reassuring her they were just making sure she was ok before the operation. Then they took another EKG last night and sent a cardiologist to look at it and she said just to be sure she is setting up a ultrasound for to look at it. She said this was just a precaution and there was really nothing she could see that Linda was in danger. Amy was telling us last night about her husband working in Washington State working for Bill Gates and making 70 thou a year. She said of that a third went to taxes. I asked her what a doctor makes in China. She is a board certified Nuro and she makes 400.00 US dollars a month. I asked why not leave and go elsewhere. Some of the directors do, but she is a run of the mill doctor and with her limited English she would have a hard time.
ANOTHER TRIP TO WAL-MART: Today was another walmart day to stock up on food supplies. I really want to ride my bike to the store but it has been so cold here and yesterday it snowed a couple of inches so back to the taxi. I have had some white knuckle rides with Steve Rider, but these guys make me shut my eyes. Red lights and stop signs are just suggestions for these guys. So one hand on the horn and two speeds, on and off.
I learned a hard lesson in the walmart today. First you have to know that for every one job in the store, they have 6 people to do it. So many blue vests running around almost as many as shoppers. I had bought a cam video for the computer last time I was there and it didn't work. So I wanted to return it and get another one. As I went into the store the greeter at the door put a red sticky on and checked my recite and wrote up a paper. Than I went shopping and filled my cart with milk and fruit and bread and what else I needed. Than it was time to go to customer service and return the video cam. Finding customer service is a little hard when everything is in Chinese, but I saw a line with people standing so I thought that must be it. Sure enough, when I got to my turn the first guy looked at it and through sign language I got the point across that it didn't work. So this guy looks at the red sticky and the recite and than puts a blue sticky on it. He than passes it to the women next to him who looks at it and the recite, than takes off the blue sticky and the red sticky the guy next to her had just put on. Than they call one of the many workers who are standing around and she takes me down to the department with the cam to find another one. there are a whole roll of them but some do not have the same code numbers on so she has to go thru the whole pile till she finds one with the same date code on it. Than back up to the service counter where the crew up there checks it out again, than they put the red and blue sticker on it, put it thru the anti magnet so it won't set off the alarms, put it a bag and seal the bag and hand it to me. So now I have to check out, so I look for my cart that I left in customer service and damm if they didn't take my cart because they didn't see me so they put everything back on the shelves. I had to go back and refill it and I forgot a few things I had in the first one.
There is always something to see at the walmart. The fish dept has really fresh fish. There are big tanks with the fish swimming around along with turtles and crabs and things I never saw before. As I am watching, a guy is picking out a fish he wants. A clerk gets a big net and scoops out this fish. But the fish had other ideas, so he jumps out of the net and flops along the floor with the girl clerk chasing him and people stepping out of the way. When she catches him the fish is about a foot long, she grabs him like a club and bangs his head on the counter. That takes the fight out of him, than she throws it to a guy with a big cleaver who takes the head off the fish, guts it and skins it before it stops jumping around. I have a nice picture of the fish jumping on the floor.
There are a few pics of Linda here, check out her face, see the mask lifting.
john and linda in China
.JPG)
Linda and Friends
.jpg)
Wal-Mart Fish Market
The One That Got Away
Fish Tanks
Wednesday, January 16, 2008
CHINA 2nd Week - On The Radio
Linda is doing pretty good today. The doctor is adjusting her med's as her condition changes. I am going to write this just as it is happening and not trying to put more into it or blame any one or sugar coat anything. When Linda first came the first thing the doc did was take blood for tests, give a complete physical and ask questions about her condition. What they found was a lot of little things to repair before they would start the stem cell treatment. They found her liver function was a little off, her cholesterol was a little high, her BP was somewhat high, her blood fat was high and other stuff I don't know. They started to adjust her med's and IV's to repair the damage. Amy, her Chinese doctor asked Linda what the American doctors said about all the lab results. Linda told her they said everything was fine. Amy was quite for a second, than said, Chinese doctors would never get away with that. I don't know if that's just talk or what but I do see a change in Linda this week. This morning as she walked past me I said turn sideways and look in the mirror. Linda had started to walk hunched up in the last couple of years. She was straight as an arrow. Also I had Linda look at the mirror and check her face and than showed her the pic of her and the dog on the website and she could see a big difference as everyone else can. Her schedule goes something like this. 8:30 she goes to the TCM guys who do their magic. That takes an hour. Than Occupational therapy. Than after that physical therapy. She gets here about noon, we than eat lunch, than comes the IV's. Also, the nurses bring in all kinds of med's all day. So she is pretty busy.
During that time I usually go out to explore. I have been reading "World without End" by Ken Follett and today I could not put it down so I stayed in all day reading. Linda came back and after a while Kotan came in and asked us if we would be willing to talk to a reporter from a radio station. Sure we would. So we met Karen Meirk, China correspondent for Radio Netherlands. Karen would like to follow us all the way thru the procedures and record from start to finish the whole story. She said it would be broadcast in Europe and Washington and maybe picked up by NPR. So she interviewed us what was supposed to be 8 minutes to start, 18 minutes later we ended. I gave the web site for Parkinsonsrebels.org and she will keep up with our blogs and come by every few days to check progress. Kotan put no strings on the interview, told us to tell it like it is and what we feel, than she left. So we could have told Karen anything we wanted, but Kotan even did not stay for the interview. So we might get some more publicity from this. Kind of cool
john and linda in China
During that time I usually go out to explore. I have been reading "World without End" by Ken Follett and today I could not put it down so I stayed in all day reading. Linda came back and after a while Kotan came in and asked us if we would be willing to talk to a reporter from a radio station. Sure we would. So we met Karen Meirk, China correspondent for Radio Netherlands. Karen would like to follow us all the way thru the procedures and record from start to finish the whole story. She said it would be broadcast in Europe and Washington and maybe picked up by NPR. So she interviewed us what was supposed to be 8 minutes to start, 18 minutes later we ended. I gave the web site for Parkinsonsrebels.org and she will keep up with our blogs and come by every few days to check progress. Kotan put no strings on the interview, told us to tell it like it is and what we feel, than she left. So we could have told Karen anything we wanted, but Kotan even did not stay for the interview. So we might get some more publicity from this. Kind of cool
john and linda in China
Sunday, January 13, 2008
China 2nd Week - Hot and Sour Soup
Great, the Internet is back up. It was off most of the day today so I better get this out while I still can. Saturday night we ordered chicken wings and hot and sour soup. I thought it was pretty good and at the time so did Linda. Until yesterday morning. When I got up the first thing I noticed that Linda was green. Not her usual color. As she lay in bed moaning I called for the Dr. Being Sunday Linda's regular Dr. was not on so this other guy shows up and he was not much of a help. He left and Carol from next door came over for something and Linda is getting sicker and sicker, Soon, here comes all that soup looking like it just came from the bowl. Not the least digested. So I am holding the bucket while Carol and I talk, Linda is hurling and Carol has a towel to wipe Linda's face. Like we do this every day. But that fixed Linda right up and soon she was her old self. Not much else happened yesterday except more gallons of stuff went into her.
This morning she woke up just fine, looking great and feeling good. Off to see DR. Wisdom for some TCM, but she had taken a shower just before going and her hair was wet. So two doctors gave her a scalp massage with a towel to dry her hair and also to stimulate the scalp. Now this was the morning of the big meeting with the hospital director and the surgeon and Kotan and a bunch of other people. It's hard to have a meeting when every one speaks Chinese and you have no idea what they are talking about. And they all talk at the same time. But the jist of it is we are going for the whole enchilada. After reading Steve's blog we had thought about just the lumbar injections, but talking to the surgeon and the head Dr. we feel that we came half way around the world so we are not going home with half a loaf. It looks like next week they will do the operation. I asked the surgeon if he was the guy who was going to do the work and he said yes, so I grabbed his hand and looked it over and he thought that was funny. So next week it is.
There is supposed to be a supermarket close by, so after the meeting I took the bike out and started to look for it. Linda wants Quaker Oat Meal so I set out to find this supermarket. I think a Chinese Supermarket and an American super market are two different things. First it was cold, way below freezing, so I didn't want to spend all day riding around, and second, this was my first trip into the really big traffic. I had ridden all over the alleys but this was the real thing. Think about riding a bike down interstate 80 at rush hour. The only thing that made it seem almost do able was there were other fools out there also and I didn't see any dead body's on the curb. When I found what may have been the supermarket I parked the bike and started to go in. There was an old lady sitting in a chair in the freezing weather all bundled up and she put out her arm to stop me. It seems she is the guard who watches the bikes and she wanted 2 of something. She showed me a coin, I had gotten some back in change so I pulled them out of my pocket and showed them to her and she picked out 2 and gave me a big smile. I don't know if she was official or one of the guys we see on the corner with a sigh will work for food. But if she made sure no one stold my bike it was worth it. Probably if I didn't pay that would guarantee the bike would be gone. I found a huge bag of oatmeal, not Quaker, but what can they do to oatmeal, and brought it back. Linda gave it the fish eye thing about the soup she had just lost.
Barry, still nothing from the web cam, just a blank screen. Ok Linda on goggle, I will send you the pics over. And the best news, after 5 days Linda pooped. And thank you David for the payers. Also Janie, glad you got the dues and hang in there Bob.
john and linda in China
This morning she woke up just fine, looking great and feeling good. Off to see DR. Wisdom for some TCM, but she had taken a shower just before going and her hair was wet. So two doctors gave her a scalp massage with a towel to dry her hair and also to stimulate the scalp. Now this was the morning of the big meeting with the hospital director and the surgeon and Kotan and a bunch of other people. It's hard to have a meeting when every one speaks Chinese and you have no idea what they are talking about. And they all talk at the same time. But the jist of it is we are going for the whole enchilada. After reading Steve's blog we had thought about just the lumbar injections, but talking to the surgeon and the head Dr. we feel that we came half way around the world so we are not going home with half a loaf. It looks like next week they will do the operation. I asked the surgeon if he was the guy who was going to do the work and he said yes, so I grabbed his hand and looked it over and he thought that was funny. So next week it is.
There is supposed to be a supermarket close by, so after the meeting I took the bike out and started to look for it. Linda wants Quaker Oat Meal so I set out to find this supermarket. I think a Chinese Supermarket and an American super market are two different things. First it was cold, way below freezing, so I didn't want to spend all day riding around, and second, this was my first trip into the really big traffic. I had ridden all over the alleys but this was the real thing. Think about riding a bike down interstate 80 at rush hour. The only thing that made it seem almost do able was there were other fools out there also and I didn't see any dead body's on the curb. When I found what may have been the supermarket I parked the bike and started to go in. There was an old lady sitting in a chair in the freezing weather all bundled up and she put out her arm to stop me. It seems she is the guard who watches the bikes and she wanted 2 of something. She showed me a coin, I had gotten some back in change so I pulled them out of my pocket and showed them to her and she picked out 2 and gave me a big smile. I don't know if she was official or one of the guys we see on the corner with a sigh will work for food. But if she made sure no one stold my bike it was worth it. Probably if I didn't pay that would guarantee the bike would be gone. I found a huge bag of oatmeal, not Quaker, but what can they do to oatmeal, and brought it back. Linda gave it the fish eye thing about the soup she had just lost.
Barry, still nothing from the web cam, just a blank screen. Ok Linda on goggle, I will send you the pics over. And the best news, after 5 days Linda pooped. And thank you David for the payers. Also Janie, glad you got the dues and hang in there Bob.
john and linda in China
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