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