Saturday, February 9, 2008

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

Thursday, February 7, 2008

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

Sunday, February 3, 2008

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