Heading Home

As the trip was nearing an end, what could I bring home for the family guys as souvenirs. After a lot of though, how bout genuine Rolex watch's. So over to the street venders and a deal was struck. Back at the hospital, all the girls came in to see what a great deal I got and told me I would never get them thru customs. But I learned a long time ago, never say never.

Too soon it was time to leave. This was the fastest 7 weeks I have ever seen except for the airplane ride which I thought would never end. As we were packing all the new friends Linda and I made came to see us off and wish us well and it was hard to say good by. Diana had the van outside to take us to the airport and a group was waiting outside to say good by. After a lot of hugs we were off to the airport and back to the real world. Diana came in with us and pointed us in the right direction and it was time to say good by to her. All the staff and doctors at the hospital were just great, but I built a special bond with Diana and when I say I wanted to put her in my suitcase and bring her home, it was only half in jest.

But the world moves on and after check in we were on the plane for the never ending ride back. Going, the plane was only half full and there was room to stretch, but coming back it was full and we were packed in like sardines. After a lifetime we were back in San Francisco and on to the dreaded customs check. On the airplane we were given a form to fill out on what we were bring back and I put a few things on it but wondered what to do about the suitcase full of Rolex watch's I was smuggling in. Well I thought I would just play it by ear. Now these custom guys are taught how to weed out shifty looking characters, so I just looked causal and hoped for the best. I must have passed the test because after eyeing me up and down, he told us to pass, but did make the comment about how nice our new genuine North Face jackets were. Now going, we had to walk all over the airport and Linda had a hard time doing that and I had to carry her carry on bag and she had to stop and rest often. On the way back, we had to walk twice as far because they kept changing our departure gate, and Linda was able to keep up and carry her own bag besides. After a short flight on a small prop plane that bounced all over the sky like a yoyo, we were met at the Sacramento airport by David and after a stop at Subway to fill up we are home. Barry and Katie brought Rocky over and at first he seemed confused but after a sniff he was trying to climb up me like a ladder and out came the slobber. Than he checked out Linda and he was back home.

We went to bed, but at 3 AM I was wide awake, so I went to the grocery store to stock up and thought if I could keep this seclude, it would be great because I had the whole store to myself and no traffic. It's good to be home.

John and Linda in California

Winding Down

Wed morning and the time is getting short. Just about everything they can do for Linda has now been done and it's time for the little cell buggers to do their job. There is a big improvement that can be seen already, but the really big improvement will be seen over the coming months . For the last week or so Linda has been complaining about her vision. The last couple of years her vision has been going down hill as part of PD. The eye communicates with the brain using dopamine and as the PD advances the vision gets weaker. So for the last week Linda tells me when we get home she has to go and get an eye exam and get stronger glasses. So she is sitting in the chair and takes her glasses off and rubs her eyes, than before putting her glasses back on she looks around and exclaims I can see better without my glasses than with them. Now what do you think that means.

Here in China phoney money is everywhere. The 100 YUAN bill is what is exchanged most. And it is the bill most copied. When something is bought at the store the clerk taking the money exams it in detail before putting it in the register because if it comes in on their watch they have to cough up for any bad bill. So yesterday Diana took me to the airline office to get our flight changed. To leave early there is an 80 dollar charge to change the tickets. So I pull out 2 100 dollar bills to pay for it and the airline people tell me they can't take American money, only Chinese. I have been cutting back on the Chinese money because we are coming home soon so I only had 8 100 YUAN bills and I need 12. so Diana says take 4 of hers than we can go to the bank and get more. So I take 4 of hers and hand the clerk 12 bills. With a sharp eye she counts them and gives me back one telling me it is no good. Well hell, I tell Diana to give her another one and this one is no good either. So Diana gets really pissed and starts on a rant that she just got paid from the hospital and that's where that money came from and she makes so little and they pay her in phoney bills. I have seen this before, a pissed Chinese woman is a sight to behold. So I eat one of the phoney bills and she eats the other. Than when we go to the bank she demands a lesson on how to tell if a bill is good. I bet that is the last phoney bill someone passes on her.

Our Chinese adventure is coming to an end and soon back to the real world. I am really enjoying China and the people here and will be sorry to leave all the friends we have made here, from the guy who sells me fruit to the street vendors to the wonderful people here at the hospital. We still have a few days here so we are going to enjoy it to the max. Tonight a bunch of us are going to Grandma's again for a taste of home and have a good time.

See you all soon, john and linda in China

Getting Ready To Go Home

Linda is over to TCM guys getting treatment of some sort. She is still feeling pretty good and looks good. I think we can leave on Fri of this week and get back to San Francisco on Fri of this week. We lost a day on the way over and will pick it up on the way back. I really like it here, love the people and feel right at home, but it's time to get back to our real life's.

Yesterday we wanted to pick up some souvenirs to take back home so I went to see the street vendors again. As I said before these guys are like sharks in the water and as soon as you make eye contact they smell blood. Well I saw a few things I wanted to buy and take home but how do you deal with them. So here is a plan I worked out you all can use if you ever come here. If you show any interest in an item, they say 200. No that's too much and start to walk away. They follow and start lowering the price. Now this is no secret, everyone knows that. But what did they pay. So you go to another guy and get the best deal you can on just one item from him and in your heart you know he still got to you. Now you take the one item you just bought and when the next guy comes at you, you say no and keep on walking. But they don't take no for an answer. So you take out the one you just bought and tell him you will sell him that one. He laughs and says how much, you say 200 and he laughs tells you how you just got taken. But you keep the pressure on him to buy yours and he gets mad and to show you how smart he is and how dumb you are he says he can get all he wants for 10. Than you say good, I will give you 15 each for all those. So on every transaction, there are the watchers. Well they all start to laugh at him and he gives in, making a little and you go your way while the rest of the vendors try to sell you more. But enough is enough and off you go.

Last night Diana was going to a friends house for dinner and asked Linda and me if we wanted to go along. We said sure and she called and asked if she could bring along a couple of Americans. Well OK, but not too enthused. Turns out this guy's name was also John and he was from AZ. he is 35 and has lived in China for 13 years now. He is married to a 23 year old Chinese woman. There were about 20 people there, all Chinese except Linda and I. His wife and her mother must have been cooking all week because the table had so much food of all kinds and looked mouth watering. Also, John brought out some Chinese Liqueur of some sort that looked like Kentucky moonshine and was so potent a little sip took your breath away. John explained to me that it was bad insults not to drink what your host poured for you in China. So as not to offend the host, I had my fair share. Soon as everyone else had their fair share the room became quite lively. And I found out much to my delight that although only Chinese was being spoken, I knew everything that was going on and when someone told a joke I understood the punch line and laughed just as loud as anyone in the room. This must be the stuff they pass out on the star ship Enterprise as a universal translator. When the meal is finished, no one leaves the table, they all just sit and chat for how ever long they feel like it. And pick at the food left with their chopsticks. And continual not to offend the host. All too soon it was time to go, so as we started to pack up John came with his camera for pics. He told me when Diana asked to bring a couple of friends he didn't think it was a good idea because we would feel left out and strange. But we got along so good with everyone he was glad we came. I told him I would probably never see him again, but I would never forget that night. So we left with that warm feeling only the universal translator can give.

A new patient just checked into the hospital today. Mike and Caroline from North Carolina. Mike is 68 and has the PD for years now. I don't know if I will see much of him as we have nothing in common at all. Mike likes to go to old car swap meets, collect old cars, has a few and also has a 1957 tbird. So what could we possibly talk about. But I may make an exception in case and talk a little with him. Caroline helps him pull engines under a tree. He reads the Early Bird from cover to cover.

john and linda in China

Lumbar Injection Rev. 2

Linda is back from her procedure and must lay flat for 6 hrs. She said the actual injection hurt a little but not too bad. Now the only thing bothering her is having to use the bed pan because she must not even rise her head. No discomfort laying in bed except boredom. Today everyone who was on the schedule received the injection assembly line style. Everyone else will get a series of 3 or 4 injections a week apart, Linda just gets one because she received the brain operation. Tomorrow the whole staff of doctors will make rounds and see how Linda is doing and make a decision on how much longer we must stay, but the time is getting shorter.

We have not seen a lot of Beijing because Linda has been hooked to the iv's everyday and I did not want to leave her alone all day so we have talked of coming back next year and doing all of China. I do take the bike out and leave for a few hours at a time but as care giver I have to stay close. The hospital does not provide meals although someone does come around to ask about take out from the restaurants around the area. But you must be alert or you have no idea what's coming back. So I go out shopping and bring back food either we cook here or eat raw.

Sat Morning I better write and let everyone know what is going on, I didn't report on how Linda did after the last injection. Linda came out better than ever, but I spent yesterday going around and checking and talking to the other patients who received the treatment. I should have dashed off a note but I didn't. So after Linda came back and had to lay still for 6 hrs, she just sat around after the 6 hrs were up. But yesterday morning she woke up full of piss and vinegar and wanted to head out and conquer the world. Jumped right out of bed and started her exercises she does every morning and was thrilled to see her balance was good as ever. She did things she had not been able to do for months. So as she was making all the plans what to do, Amy came in and checked her out and said she was not to leave the room because Amy did not want the cells to go bad. Well hell, here Linda now has all this pent up energy and has to sit in the room all day. But she did manage that. This morning she is up and still feels great. As the day goes on we will see if this is real or what.

There are a few interesting cases here. Two that Lynn would be interested in. They both have Parkinson ism.This is Parkinson's that medication has no effect on. The German woman who is in her 50's started showing symptoms about 7 years ago. For 5 years she wasn't too bad, but about 2 years ago she started to go down hill pretty fast. Now she can't walk but a few steps and is in a wheel chair. She has had 2 injections now and it is too early to see any difference. The man is 68 and again it is too early to tell the outcome. Another 66 year old woman from England had DBS done 6 years ago. The effect of the DBS had now worn off, her husband has set the impulses as high as it can go and it has no effect. She has had 2 lumbar injections now and we are waiting to see what the results are. One man is 75, he was vice president of an engineering firm and wrote a book that is the standard of the industry and is in it's 4 printing. He has PD and early stage Alzheimer's. I want to follow up on these cases too see the outcome. I better get this off so we can share the good news.

john and linda in China

Lumbar Injection Rev. 1

Well they just came with a gurney and hauled Linda away for the lumbar injection of stem cells in the spinal fluid. The hospital is in full operation again after the new years holidays. For a day or two we have kicked around if we should do this additional operation and decided as long as we are here lets get it done. I guess in for a penny, in for a dollar. What this is supposed to do is insert stem cells into the spinal fluid and that carriers the cells into the brain and floods the brain with stem cells that can reach places the brain surgery may have missed. Linda is the only patient here that is having both procedures done. All the others have had only the spinal fluid done. What they tell me is that only the patients that are in good enough shape to start with get the brain injection, but it took them 3 weeks to get Linda into that kind of shape. She had all kinds of little things wrong they had to fix before they could do the first operation. So she should come back a new woman. But still it takes 9 months for the cells to grow and reach the full benefit.

Last night 4 parkies and their others and Diana went to a restaurant called Grandma Kitchen. Steve you will remember that one. If you took up a small restaurant anywhere in the American Midwest and plunked it down in Beijing it would look the same. I got a hamburg that was as good as any I could get at home. Linda got a BLT and finally some root beer. She has been looking for root bear ever since we got here and last night she was able to quench her thirst. And than she topped that off with a chocolate ice cream Sunday with a cherry on top. So today she is ready for anything.

When she comes back I will update this and let you know how she is doing.

john and linda in China

Chinese New Year

Being that this is the new year going on and there are festivals going on at most of the temples, we asked the nurse if we could start Linda's iv's later and go out to the festival before. They said no problem so we walked to the Temple of Heaven. This temple was built in 1420, that's before Columbus was even born. When we got there people had already filled the place from end to end. The grounds here are pretty big. The book says 2,700,000 square meters. Remember, an acer is 45,000 square ft. So what they were doing is setting the scene for the Emperor to go on a stroll. Now this guy can't just get up and go out to check the weather, what ever he does has to be a big deal. First comes a bunch of guys with whips to make way. Than followed by about 400 guys with banners in case no one knew who he was. Than another 4 or 5 hundred guys with pikes and swords. Than a few hundred with feathers waving, than more beating drums and gongs and trumpets and than and only than the Emperor comes riding in a chair carried on the shoulders of 10 or so guys. So he gets out, sticks his finger in the air and says it's cold and they all turn around and go back in. We spent about 3 hrs there and had a really good time. I took video's of the whole thing, I being tall could hold my camera over my head and get some good shots of it but the short Chinese could not see a thing, so they all crowded around my camera and looked at the screen to see what was going on. Pretty funny.

Than back to the hospital and the iv's. Linda seems about the same today, not much change but not any back sliding either. After the IV's are done we will go out again and walk. We are walking a couple of hrs a day now and I think that is helping Linda get stronger. Just about all the rooms here are filled now, but I find it strange that all the people don't get together to see what is happening with the other patients. I go around and see how the other patients are doing but no one else does that. Most of them just stay in their rooms the whole time. I make the rounds to see what their symptoms are and how they are doing, but I don't see any one else doing that. When I do go for a visit every one seems happy to see me, but we all don't get together for a gab fest.

Every one should be back by the 14 th, than we can have a meeting and see what they say about Linda getting the lumbar. Either we can come home than or stay longer for more treatment. I talk to Lorna every night and outside of our dog pooping in their new house, every thing seems to be running smooth. I really do feel bad about our dog's bad habits, I told Lorna to keep him outside till he learns the difference. Lorna goes over and feeds the fish in the mornings and Barry and Katie go over in the evening and feed them again. I am so going to owe them big time when we get back. Linda and I are so lucky to have the family support we have. All four of our kids are just the greatest.

OK Dottie

OK Dottie, you got me out of my slump. Linda is still doing about the same. Right now she is hooked up to the tubes and will be for the next few hours. For the last few days, as soon as she is set free we both take about an hour walk. The day before yesterday we were out and we were going shopping, so we were going thru one of the stores when nature called on Linda. Now the Ladies rooms here would make all you proper ladies back home cringe. What you have is a hole in the floor that you squat over and let go. I am not sure how that works because I haven't witnessed it first hand, but just from a scientific point of view, I would like to see it just once. Also, they don't provide paper and you must carry your own to use. than, you can't put your paper into the hole in the ground, you put the used paper into a basket next to the hole. So for some reason, Linda didn't want to use that. For us spoiled westerners they provide western style toilets and Linda is glad for that. But we were there and the toilet was here, so double time back to our room. And for all you guys laughing out there, the guys have the same hole in the ground, but you have to stand and aim, and not every one is a good shot.

After we were here for 5 weeks my hair started to look like a haystack. So in my travels I kept my eyes open for a barber shop. I noticed all the guys had nice trimmed hair so they must go somewhere. I asked Diana about that and she said she would have a barber come here. But I wanted to do the Chinese thing and get one where the rest of the guys go. So as I would ride my bike around I looked for a place to get a hair cut. Now remember that word, haircut. All I saw were beauty shops and they looked like the ones back home so I stopped at one and walked in and pointed to my hair. The woman nodded and had me take off my coat, laid me down and washed my hair. Than sat me up in a chair and I guess she was asking how I wanted it. I saw a guy walking outside with normal hair, so I pointed to him and than to my head. She said Ah and started to cut. Or should I say sculpt. She didn't cut my hair, she cut each hair by it's self until she had what she liked, and it looked damm good. Linda said that's the best hair cut I ever had. Just before we come home I am going back there and than first thing before it grows out show my barber how I want it from now on.

The other day I rode the bike to the store and picked up some stuff. When you park your bike here there is a long row of bikes and you put yours in where there is a space. So when I came out I put the grocery's in the front basket and started to put my gloves on. Well the extra weight in the front basket caused the front wheel to turn and the bike fell over. As it fell it knocked the bike next to it over and the next and in slow motion about 100 bikes fell over. It looked like something I saw once on TV outside a Harley bar. Now there is no such thing as not being noticed in China. The population of Beijing is 30 million people and they must of all been there that morning. So I stood there frozen not believing what I had just done. I could see smiles all over the place and everyone just stood there to see what I was going to do about it. Well you have to start somewhere, so I picked my bike up and stood it up than went to the end of the line and started to pick each one back up and than the next. The crowd saw the show was over so they started to move on again. When people here move on it is like a big river moving along. If any part of it stops the whole city comes to a stand still, so it was a good thing they started moving again. This river of people meshes with the river of cars on the street and no one stops, but they all intertwine and against all laws of nature, it works.

This is enough for a while, Linda is almost done with the iv's for today, so I think we are heading out.

john and linda in China

Support Group

Yesterday was kind of a special day for Linda and me. Randy brought his laptop to the support group meeting and we were able to talk to the group and they could see Linda on the web cam. With all the cheer and good will we were feeling warm for the rest of the day. Linda is doing about the same today, no set backs and no great improvement. But one thing, Linda was allowed to wash her hair yesterday and that made her very happy.

This is the Chinese new year and last night all night long was one continues roar from the fireworks. The fire crackers they sell here are quarter sticks of dynamite and when they go off they leave a hole in the ground. When I was a kid we had cherry bombs and M80's, but this is real explosives. And in the alleys, it's little kids blowing them off. This morning I looked for kids running around with stumps but they all looked fine.

Linda is still hooked to the mystery iv's and as soon she is free we take off for a long walk. The street vendors still try to get us but I found a way to get around them. When they say 100 I say I really want it but would they take 1. So I try to get for 1 and they give me a disgusted look and run away.

More Later

john and linda

Some Pictures

 

Good to hear from you

I started this letter for an answer to Chet and Diana but the more I got into it I thought, there is enough new information to send it out to everyone.  Chet and Diana are bike riding and square dancing friends living in Napa.  We are such good friends that when they got married they invited us to go on their honeymoon with them.  So we did. 

 

Well it is a little cold here this time of the year and there is so much to see.  I go out a lot to see the people and the old neighborhoods but Linda has to stay here in the room.  So what we are talking about is after all the Olympics hoop la dies down we would like to come back and stay longer and visit lots more places.  The Chinese people are a warm and friendly people and I walk down the alleys of the poorest and oldest parts of the city and feel perfectly welcome.  What I have found is there is so much to see that even on a bike you are missing so much, so I ride the bike to another part of the city than park the bike and set out on foot.  Soon I am back in time hundreds of years.  There is little change in the older parts of Beijing but the old parts are being torn down as the city moves into the 21 century and in a few years that style of living will be gone forever.  I will be glad when Linda is allowed out of the hospital and can share what I am doing.  This is Monday morning here and Amy may have the stitches in Linda's head removed today.  The doctors are insisting that Linda gets plenty of rest and stay in the room for the reasons that infection is a possibility and also the stem cells take hold and not die off.  That is a possibility, that if the cells die off before gaining a foothold, that they will have to do lumbar injections to seed the brain again.  I am understanding what they are trying to do with the cells and why they work.  There has been a lot of research done here before the first humans were allowed to take part, and since than the treatment has been met with success, some better than others.  Amy tells me so much depends on the health of the subject in the first place.  A lot of patents come here as a last resort and by that time not much can be done for them mostly because the rest of the body is in such bad shape. 

 

Amy is cutting back on Linda's med's and last night she had her first off time in a few weeks.  I had so gotten to use to seeing Linda acting almost normal that I was taken aback for a while.  Her tremors came back and she was very slow and hunched over again. This morning she is much better, her gate is stronger but she says her balance is a little off.  Amy will be making her morning rounds in a little while and we will be discussing what this means.  Amy spends a lot of time with us.  She is 30 years old and I am starting to feel like she is another one of my daughters.  I will miss her when we go home.  She always tells me I am too tall and I tell her no she is too short.  Than we laugh.

 

Linda and Giovanni in China

Sunday

Again, not much to report, Linda is the same, still on IV's all day and no change except for the first improvements, but no set backs either.  Amy still won't let her shower or wash her hair and that is the first thing Linda complains about to who ever will listen.  Except that she is in a snit all day today and I will have to tell why.  This is the Chinese New Year and the biggest holiday of the year for the whole country.  So what everyone does across the whole country is make dumplings with the whole family working together and than eating them.  So last night the hospital put on a dumpling party with most of the patents getting together with the staff and making dumplings and than eating them.  I took a lot of pictures so I didn't make many dumplings but Linda got right in there and made dumplings.  So everybody was chit chatting and having a good time when this speech therapist for one of the patents came over to talk to me.  She was 33 and pretty good looking,  So as were talking and Linda was sitting right next to me, she asked, Is that your mother. So I said no, that's my wife.  Well for some reason Linda did not take kindly to that.  Now in my mind I thought anyone could see that Linda was not my mother, so I thought it was funny that this girl would make such a mistake,  But it seems laughing was not the right response.  This is one of those times guys brains work differently than woman's. So after a while I sort of changed my mind and didn't laugh too loud.

 

Today at lunch time Amy came to the room and asked me if i wanted to go to a market that was near and I said sure.  So she went and changed cloths out of her doctor stuff and we got a cab and off we went.  Now this was a big store, like walmart, home depot, Macy's, and Safeway all rolled into one.  I found a few things I wanted to buy, the price was on them so I thought that was the price.  Not in China.  I started to pull my money out and Amy frowns and said not yet.  She picks up some of the stuff and tells the sales girl that the quality was no good.  So the girl behind the counter starts arguing loud that the stuff was just fine.  Now being China the place was full of people, and soon a crowd stood around to watch the exchange.  I'm thinking, lets just pay and get out of here.  But that's not how the game is played.  Another guy standing there picks up some of the stuff and chimes in with his 2 cents worth.  Now there are 5 sales girls behind the counter all talking a mile a minute and our team on the other side saying we could get it cheaper elsewhere and better quality so lets go.  Well hell, I want the stuff, but no it's no good.  So just in the nick of time, the sales girls blinked and the day was saved. Amy saved face and to cement the deal she asked for another box.  Than on the way out, as we went to get a cab, we passed a line of bicycle rick shaws.  Joking I said lets ride back in that.  Amy asks how much and the guy says something, too much.  All the other guys in line started offering to do it cheaper.  But we had to get back soon so we looked for a cab.  Now the game is started again.  How much.  I don't know, what the meter says.  No good, you have to know how much.  So this goes on for a while and I want to get back, but we have to play the game.  Finely we start off and before we get there, the guy shuts off the meter and we save a nickel.  It isn't the nickel, it's the principal of the thing and the game goes on.

 

Yesterday I took the bike out and rode to one of the old sections of Beijing.  There was so much to see I parked the bike and started to walk thru the alleys and back in time.  I must have walked for 2 hrs before I started to look for the bike again.  This is the stuff you never see except on foot. There is so much more to see, like the great wall and the forbidden city.  But I don't want to go there until Linda can go with me ,and I don't know when that will be.

 

Maybe I spoke too soon, Amy has been cutting back on Linda's med's and tonight Linda is slower and the tremor is back.  It takes a while for the cells to start working so I guess we will wait and see.

 

john and linda in China            

Waste of a good Blizzard

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                      

Viartis Response

John and Linda, there are a lot of issues concerning this, that maybe I can't get fully in to an e-mail but I'll try.

 

As far as stem cell is concerned, I'm certainly not a religious objector. I have never had a religion ! However, I am a critic of stem cell use solely for scientific reasons.

 

It is widely claimed that there is massive cell loss in Parkinson's Disease, and that these cells (the dopaminergic neurons) need replacing. Yet not a single study has ever shown that there is massive cell loss in Parkinson's Disease. What was demonstrated is that there is insufficient formation of dopamine in those cells. The cells are there, but they're just not producing enough dopamine. The cells therefore don't need replacing.

 

You went to great lengths to check what happened to previous stem cell surgery patients. However, I would be very wary of what they claimed. People with severe Parkinson's Disease and especially those that undergo surgical treatments are well to be very prone to the placebo effect. Many patoents have claimed a massive reduction is symptoms after a clinical trial when they weren't actually taking anything for it ! I would certainly not make any assessment based on their impressions alone. From those people I would want to know what their symptom scores were before and afterwards, and precisely what their PD drug intakes were before and afterwards. Only from this could an objective assessment of their progress be made.

 

It appears that besides stem cell surgery that patients in China undergo other changes, including drugs, and, if I remember correctly "nutritional balancing". If by this they mean altering the patients nutritional levels then there could be an effect by different means, because somebody's formation of dopamine is entirely dependent upon certain nutrients. Dopamine is made entirely from nutrients.

 

Any drug intake alterations could also affect the pateints symptoms positively. 

 

When additional cells are put in, there is also a fresh supply of dopamine being put it. If there has been non-placebo effects in previous patients then it could be because of this extra dopamine rather than the additional dopamine producing cells.

 

DBS has a persistent effect because it is used persistently. A one off stem cell surgical operation could not cause this type of improvement long term, but possibly as you have suggested, it might manage this in the short term.

 

The one positive sign I have seen from your description of Linda's response is the increased dyskinesia. Although this sounds like a bad effect, it suggests that the dopamine levels have increased, because that's what causes dyskinesia. It depends on whether the increased dyskinesia persists as to whether it is of significance.

 

We will continue to follow on your blog what happens to Linda for weeks and months to come.

 

Viartis

 

Response to Viartis

Hi guys, the last thing I want to do is argue with you.  First because I don't know what the hell I am talking about, and second, I am on your side.  On this China stem cell thing, maybe it's not the stem cells, but something is going on.  I have seen with my own eyes the results of this treatment and talked to all the others.  So if it's not the stem cells, what is it.  Maybe it's a form of DBS, only without wires, maybe anything you put into the brain in the same local will cause a change.  The injection they do here is in the same place they do DBS.  On the lumbar treatment, that I don't know anything about.  There are about 6 patents here getting that and all I can do is wait and see and follow the results later.  That is the only thing I am concerned with, the results.  How and why I will leave that to you and others.  Check out my blog for today I try to explain that.

 

john and linda in China 

 

Linda's progress

This is Thurs morning and not much to report.  For the past couple of days not much change in how Linda feels.  No set back in the gains she made either.  She is feeling pretty good and her spirits are high.  This morning we are going back to the hospital across town for a follow up MRI.  The doctors want to make sure no internal bleeding or something they missed.  Amy gave Linda the go ahead to finally leave the room and try walking the halls.  Yesterday the surgeon and Amy and Dr Schuul came in to exam Linda and asked her how she felt and she told them she felt that her hair was dirty and wanted to wash it.  Dr's said next week.

 

Also yesterday Karen from the radio station that is following Linda's progress came in for another interview.  She was to come in a couple of days ago but there is a big snow storm South of us and that is the big news here, so Karen reported on that.  This is the worst snow in over 50 years and it has all of China tied up as far as transportation goes.  The trains can't get thru, the airports are backed up, there is no travel by car or trucks, the electric lines are down and everything has come to a standstill.  This is the China new year and most people go home for the holidays.  So it is like when one US airport shuts down due to a storm, it backs up the whole country.  What is worse is food is not being delivered and with no electric, no heat.  CNN was to come in for an interview and had to cancel for the same reason.

 

Karen tells up there are other facilities here in Beijing that are offering stem cell treatment for spinal cord injuries.  Her report will include them as well.  Wether this is cutting edge medical treatments or quack medicine only time will tell.

 

More to come,  john and linda in China

 

 

February First 2008

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

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:

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

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

The Morning After

Now we are starting day one of Linda's recovery. They did the operation yesterday morning in about 2 hrs. That all went well and they brought her back to the room with instructions to lay flat on her back for 6 hrs. 3 hrs into the flat back thing they wanted to do another CT scan to see if any internal bleeding was going on, so they loaded Linda into a gurney and took her down to the CT room. Everything looked fine and they wheeled her back to the room. But the trip down and back riding looking up at the ceiling spinning back and forth caused a little hurling. But that passed and the rest of the day went well. When they set her up in our room the hooked her up to a monitor to record body functions. About one in the morning I awoke to see Linda standing by the bed looking all shook up. I asked what was going on and she said she couldn't answer that thing. Well a lead had come off the monitor and it was beeping. I said that's not a telephone, and she kept saying she couldn't answer it. I thought, man is she loosing it, did they stir her brain up somehow. But once I figured out what she was trying to tell me I understood. She was trying to turn off the beeping so as not to wake me and couldn't figure out how to. So the nurse came in and said she didn't need the monitor any more and took it away. After that nothing more happened.

This morning she looks just fine. No other person is inside her head and she answers to her own name. So now we are on the road to recovery.

john and linda in china

Operation Over

Linda has had the procedure and is back in the room. She feels pretty good she says. On her end it wasn't a big deal, but on the other side she said it was a big deal. There were 6 doctors and 4 nurses in the operating room and each was involved she said. I wanted to go watch but they said no and Linda said there would not have been any room anyway for me because it was pretty crowded. For now all the excitement leading up to this point is over and now the excitement from this point forward starts.

John and Linda in China

Interesting Guy

Yesterday another patient came to the hospital. A 40 year old man from Brazil checked in. He is a famous race car driver there and some how he got a brain parasite. He was operated on at home and now he is half paralyzed and in a wheel chair. His doctor came here with him to make sure, what I don't know because if they could have fixed him at home he would not be here. So where ever he goes, there is a group of other guys from Brazil with him. Be interesting to see what they can do. I asked Kotan what they could do and she says they are going to try to grow new brain cells. I will be interested in that one for sure.

In two hours now they are coming for Linda. The first step is to put her head into a frame to keep it still, than do a CT on her, mix that with the MRI they did yesterday and plot where to insert the stem cells. I hope they find that spot a little easer than trying to agree on where to shave her head. There were 4 doctors, 4 nurses, and 2 administers all arguing about where to shave. I videoed the whole thing, and thought it was pretty funny.

Linda is feeling really good this morning and is pretty eager to get this done. As the day goes on I will keep everyone informed.

john and linda in China

MRI this morning

This morning we went to another hospital for Linda's MRI. This hospital was in another part of the city and took about half an hour to get there. This time we went in a big black car with a driver and the doctor and a computer guy. They did the procedure and back we came. To get to this hospital we went all thru the new part of the city and the buildings and building going on were fantastic. Every where you looked there were cranes putting up new buildings, and Peter, you will like this, the scaffolding was all wood poles held together with bailing wire. Some a couple hundred feet high. Guys hanging off them like monkeys. I guess OCSA hasn't put their nose in here yet. I though we were going to the hospital next door like yesterday so I didn't take my camera, but I will go back for sure.

The people here have a 6 th sense about where they are. Cars fly by, bicycles turn in front of cars, people are walking in the street between cars and bikes we even saw 3 Chinese dogs running thru all this. On the high rise buildings I was shocked to see the windows with out screens open to the air. No one here gives the next guy any slack. If you are waiting for a car to give you a break to enter traffic, they will find your skeleton behind the wheel when the next building is built on that spot. Everyone is responsible for themselves here. If a guy stubs his toe on a broken sidewalk, he doesn't sue someone, they just think he is stupid. I tried to tell Amy about how the old lady spilled hot coffee on herself than sued Mac Donalds, I could not get the point across what suing was all about. If you don't get out of the way of a car, it's your fault for not watching and the car guy gets mad at you for getting in front of him. And for some reason nobody gets hit by cars, or stubs their toe and for sure if they spill hot coffee in their lap they keep their mouth shut so they don't appear stupid. After watching how things work around here, I really believe that if you were able to transplant a city of 100,000 people from home into the middle of Beijing and they had to fend for themselves within a month 3/4 of them would be dead. They would fall out of open windows, get hit by cars, fall off bridges into the river or any number of things. We are so taken care of at home that here we would be like sheep dropped into a wolf pack. And no lawyer jumping up to sue someone. I don't know if the people here would do any better at home, but it seems that whenever a container full of illegal's sneak in, we never hear from them again. They learn our system very fast. That's my take on the whole thing.

Amy came to chat with Linda and when I stood next to her, she looked up and told me I was very tall. I told her no, she was just very short. So she gave me a belt. I took our picture, now you tell me.

Sometime later they are going to come in to shave a spot on Linda's head. I will take pics of that. In the morning they are going to do what we came all this way for.

By the way, Randy is in Germany right now getting his treatment. Go to our web site, Parkinsonsrebels.org and see how Randy is doing. All the parkies out there can see if any of this works before trying it for themselves.

linda and john in China

Meeting

Linda and I were just called to a meeting to discuss the operation Fri morning. Dr. I think his name is Jung, spent a great deal of time telling us of the risks involved. He will do the procedure along with a team. He told us the dangers Linda would face and that it may not work at all. No guarantee. I asked him how many operations he did, he said about 300 a year. I than asked how many had serious problems, he thought for a while and said two. I told him that in baseball you have to know a hitters batting average and his was pretty good. So we are going to go for it. Now that it is getting close it is a little scary, but again if we do nothing that is even scarier. Tomorrow morning Linda will get another MRI and a CT scan. Than that data will be fed into a computer and used to direct the doctor to the target spot. So there it is.

john and linda in China

Tomorrow is the day--Not

If all goes well Linda will get her operation tomorrow morning. If the operation goes as well as the IV's have been we will be very happy. Hold the phone, Amy just came in. Linda had her ultrasound yesterday at the main hospital, more on that later. Amy says the ultrasound was normal for a woman her age. No cause for concern. But there a few more tests to check before the operation. So maybe Fri. rats. Now we want to get the show on the road and get this over.

Yesterday Linda had her ultrasound at the main hospital. So to escort us over they sent over the sister of Yao Ming, the Chinese basketball player. This was the tallest gal I have ever seen. And I soon found out why. We walked to the main hospital from our section of the hospital and once we got into the main hospital what a difference. Ever heard the term Chinese Fire Drill. Well that is orderly compared to what we walked into. Wall to wall people everywhere all pushing and shoving to get where they wanted to go. And thru all this like a huge ice breaker plowed our guide. We tried to stay as close to her as we could because if the slightest space opened between us it filled up with fast. The main hospital must cover a few square miles. We went down hallways, up elevators, down more hallways down more elevators till we got to the ultrasound section. Now about the elevators. You are going to love this Scott. When it was time to ride another elevator our escort pulled us to the door so we would be first on than she would push us to the rear of the car. Than this huge mob would get on. An on And on. There is no such thing as personal space in China and soon we were pressed into this box like a large trash compactor. And still they came in. I thought there could be no more space and still they pushed in. When it got to where you had to catch a breath when the guy next to you exhaled, that's when the door would close. Than we would get to our floor and the big lady would push her way thru the mob pulling us along in her wake. Than down another mile long hallway full of people. When we got to the ultrasound section there were a bunch of people sitting in a row of chairs waiting for their turn. Watching the going on's, the time pass quick. When it was Linda's turn, she went into the room and it was like an assembly line. Get on this table. Hook up the leads. Scan. OK, get out. Next. they didn't even remove the leads from Linda. As we were walking down the hall she was pulling leads off her hands and arms. Back in our room she was still finding sticky's under her shirt. So what I see is the Chinese people get good care, just fast.

The night before last Linda was feeling pretty good so I took her out of the hospital grounds and to the walmart. This was the first time Linda did a taxi ride here and good thing she had her panty liners on that I had got for her because the taxi ride made her wet her pants. I've talked about the taxi's before so just check back a few letters to review.

Linda is taking some treatments right now at the TCM guys and she likes that. She is looking so good now that if she was home you would be amazed It can only get better.

john and linda in China

Clean Air. NOT! - Second Week

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:

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





Linda and Friends

Wal-Mart Fish Market

The One That Got Away

Fish Tanks

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

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

China - Day 4 - Temple of Heaven

Good morning everyone, it's about 4:30 in the morning here and I am wide awake. It's noon yesterday at home. So maybe I will tell you what the stock market did yesterday, I wonder it that works. The Internet was down yesterday morning so I could not send anything out. Right now Linda is still asleep so I am being quite. But at 7:00 our time here the place begins to buzz. The doctors come in to check out how she slept, take her BP and looks thing over in general. Then we have breakfast around 7:30 and she starts her day. All morning she has appointments with different doctors and therapy of one kind or another or another. Dr. Wisdom, he is the Traditional Chinese Medicine, here after know as TCM, doctor. Dr. Wisdom likes the idea Linda does Ti Chee and will do it with her. When Linda woke up yesterday morning I noticed a change in her face. It was soft and had a lot of expression. The parkies out there know about the Parkinson's mask and I have been looking at it for years now. But it was almost gone. I told Linda to check her self out in the mirror and she could see it too. All afternoon Linda is hooked up to IV'S and they pour gallons of stuff into her. There is some amber stuff I asked Amy what it was and she told me it is Chinese Medicine and has no name. I said come on Amy, you are an MD, you have to know what's in there. She says it's to make the brain communicate better. When Amy came in I showed her Linda's face and she did not seem surprised. Well, whatever it is maybe something is starting to work. On Monday we have a meeting with the head Nero and he will make decision on what approach we are going to take. After breakfast Linda wanted to take a shower and have me wash her hair. The shower is pretty big here, but don't get any ideas, the water is cold and that sure takes any erotic thoughts a guy may have away. Kind of a form of Chinese birth control.

When Linda left I thought this is a good time to explore some more. So out came the bike. About half an hour away I came across this huge park called Heavenly Temple. It holds a large number of temples built around 1400 AD. Just beautiful. But what a surprise when I got in. The place was wall to wall Chinese. And everyone of them was doing something. One group had a big feather thing that looked like a big bad mitten birdy and they were in a circle kicking it back and forth like a soccer ball and all laughing. Then I came across a whole field of people doing some kind of exercise, not Ti Chee. So I watched for a while, than there was a gang of people with rackets and a ball they were not batting, but like scooping it back and forth to each other. As I was watching one lady grabbed me and handed me a racket and put me in the game. She showed me how to hold the racket and what to do and there I was playing. Every time I missed some one would run up to me and show me how to do it better. I gave my camera to a gal watching and she took a few pics of me. Look like a big klutz next to them. When I was worn out we said our good bys and bowed and I moved on.

Next I found another big field where everyone was ballroom dancing. I didn't get too close to that one because I saw a few ladies dancing alone with their eye on me. When I say everyone, I am talking hundreds. Moving on, I heard beautiful singing coming from another corner. Again, there must have been hundreds of men and women all singing. But all the men were in one group and the women in another and one guy out in the middle like a conductor leading the song. He would have the men sing and the women than all together and they all knew the words. these were just people walking by. As I stood there people walking by would start to sing and join the group and others in the group would have had enough and walk away. Then when that song was done another guy would come out of the group and lead the next song. I took a lot of pics, but I think I am going to put them all on our web site, Parkinsonsrebels.org So look for them there and anything you may have missed. I wondered around there for a few hours and must take Linda back. I had my ears up all the time and did not hear a word of English.

One thing Lorna warned me about was the Street Vendors. These guys are like a cloud of gnats. They buzz around trying to sell you anything you can think of.. And you can't get rid of them. And if you stop to even acknowledge you see them the rest of them are like blood in the water and look out. So as I was walking along and it was pretty cold, I came across an old lady selling hats and things. I asked or showed her her gloves and she nodded and pulled out a pair. Than the dealing starts. She holds up some bills and I shake my head. She takes away one bill and I say no. I base everything on what an Apple cost. I went to one of the stores and bought an apple and it cost 10 bills. So when I see something I figure how many apples. So I bought the gloves for .8 of an apple. than she showed me an Olympic hat and I bought that. Now the rest of the sharks watching saw a mark. As I was walking out to my bike a swarm of them were trying to block my way with everything but the kitchen sink. One guy was really on me. He had Rolex watches he got down to 3 for 10 dollars. And he would not take no for an answer. When I got to my bike he tried to stop me from getting on, but he was laughing like it was a big game. So I was laughing like he was my best buddy and this was great fun. Than all the others watching started to laugh too. So here is this guy hanging on my arm and I am pushing him away and we are all laughing like a bunch of idiots. Than the guy starts to let the air out of my front tire like it is a big joke, so I laugh like I am having the best time of my life, but I grab him in a head lock and apply a little pressure on the pressure point on the shoulder. When I felt him stiffen I let him go. Now he may know kung fu but I know Kuk Soo Won. So he backs off and we all stand there laughing like we all just escaped from a nut house. I jumped on the bike and as I rode away I turned around and noticed no one was laughing now. So Barry, print this out and read it to Mam and tell her I want my next belt.

Linda has now got up and first thing I am checking her face. Not quite as good as yesterday, but not as bad as the day before. I will check on it as the day goes on.

More to come, John and Linda in China






Temple of Heaven
Beijing China


































Temple of Heaven Gathering
















John Playing Racket Ball