Nate’s Ataxia Blog

just another manic monday

The bullet train runs from Shijiazhuang to Bejing several times a day, it is run by CRH or China Railway High Speed and is designed to run 200 to 250 km/hour or about 155 miles per hour.  The highest speed we reached on the trip was 210 km/hour (the speed is posted every few minutes at the front of the car)  The train left promptly at 6:30 am and we were really impressed with it; we felt like we were on a plane complete with the safety instructions and nicely dressed stewardess’s.  Bejing’s train station was crowded and hot with a long taxi line.  We then took the taxi to the bus station only to find that the bus was full, we could have waited for the next one but our guide Sharon started talking to this man who offered to take us for 400 yuan.  Well, the bus ride was only 60 yuan but we would have to wait, the buses were crowded, took longer.. you get the picture, so we said yes.  This young man runs off and soon drives up in this old black car, I think he may sleep in it as his clothes were all over the back.  I was really wondering what we were getting into.  Traffic was terrible but we made it there in about an hour so the trip one way was 5 hours, the brochures say the wall is in the country side so I kept waiting to run out of people but we never really did, there are people everywhere!  Since we hadn’t eaten, the driver offered to take us to a restaurant before we climbed the wall so that’s what we did.  It looked like a picnic area but it was a family who cooked food to order so we gave it a try and Sharon just ordered what she thought we might like.  There was the ‘whole’ chicken again, stewed tomatoes, some vegetable with corn and rice.  Unfortunately we never got to even taste it because Nate got very sick.  I hesitate to share this with everyone but I guess we are in this together so here goes.  He got very pale and sweaty so we quickly decided to go down the mountain and head for home. We were unable to have the driver take us to the train station as apparently it is ‘forbidden’ since he is not really a taxi driver.  So we had to go the whole bus station/taxi route to the train station.  We made it to the station and were waiting for security when Nate turned and looked at me and threw up all over me, then did it 2 more times.  Now that we are safely home and he is in bed asleep, I can see the humor in what happened – it got us through the crush of people..fast. It was like the pie eating scene in “Stand By Me” because I started to gag and everyone ran away from us. We were rushed on in and he was taken to a airconditined waiting area with soft chairs and given a airsick bag so that’s were we stayed for 3 hours till the next train came to take us back. 

I don’t know if it was the transition from cool airconditioned train to the hot sticky taxi to that weird guy’s car  and then the curvy roads and crazy traffic that got him or if he is still not recovered fully from the last treatment.  We probably should have stayed home.

The population of Bejing is around 17 million people and it really felt like it.  We saw all extremes from poverty to opulence and it is sort of hard to put that all together in your head to have an opinion of the place.  Nate and I were taken to the Badaling section of the Great Wall which was started by the Ming dynasty in the 1300′s.  It looked amazing and we hope to go back sometime to walk on it. 

So that’s why we had a manic Monday, fun..sick..poverty…wealth…cool airconditioning….hot sticky taxi.  Ups and downs.  Hope you all have a good Monday!  Love, Nan & Nate

13 comments June 15th, 2009

Exploring Shijazhuang City

Today started out well however Nate and I postponed our trip to the Great Wall until tomorrow. The doctors are giving him a day off of therapy to go on Monday since he wasn’t feeling so good today, they are very considerate.  He and I went to Pizza Hut for lunch and then shopped a little until the headache came back.  He is laying down again and they gave him some medicine.  Tomorrow, we leave Shijiazhuang at 5:45 am on the bullet train to Bejing.  I hope it is as fast as the name emplies, that would be fun:) Then we take a taxi to the bus station and then the bus will take us to the Great Wall.  Afterwards we will have lunch and time for shopping on Silk Street. We will leave Bejing on the bullet train again to arrive at the hospital at 10 pm, it will be a very full day!  I am posting pictures of our trip into the city and to the big supermarket, it is always interesting when we are out and about.  I always see many things that I want to ask about but not many people speak english and our guide can’t always go with us.  I did find out that the purple ice cream is fragrant taro, so that was different. More later…Love, Nan & Nate

6 comments June 14th, 2009

It was a sick day

Nate felt good this morning so we went upstairs to breakfast but about half way through, the headache came on.  We came back to our room and he layed down, he missed all of the therapies today and received iv fluids and some medicine.  We have heard that these headaches can happen, hopefully it will pass soon as tomorrow we have booked a trip to the Great Wall.  Oh well, we have all month if we have to miss it – the important thing is that Nate should be able to enjoy the outing fully.

Thank goodness for itunes, we have watched Gran Torino, the Mummy and Breakfast Club..it’s hard to find a movie we both like.  I am not a fan of ‘Family Guy’, sorry, it must be a kid thing. Doug and Megan were describing their dinner at the Gdowski’s last night (our morning), a good hamburger sounded so good - our seaweed, bean sprouts and hard boiled egg did not taste quite the same after that.  We may have to break down and order KFC before our time here is over.  The neighbor told me that even KFC leaves the feet on the chicken, maybe we are missing out on something that tastes really good; what do you think?

Thanks for all the things you are doing for our family, I know Doug & Meg are enjoying the food and companionship.  I am sure Katy is feeling the support in Kansas too, technology is great.  This is day 2 of not leaving the hospital but it looked like sunny weather.   I hope we can go into the country side tomorrow to see the Great Wall, we will schedule another trip to see the Forbidden City which is in Bejing but the two are too far away to do in the same day and still get back to the hospital at night.  I will definetely have pictures tomorrow.  Take care, Love..Nan & Nate

5 comments June 13th, 2009

Treatment #3

We started out early today with a walk to that very old building again to do 2 more eye tests.  It was a nice, sunny day and good to have some exercise before the lumbar treatment.  The building was very crowded as it was last time and our guide Michelle pushed us up to the front of the line…it’s a good thing I can’t understand Chinese. :) I didn’t really need to know what they were saying to know that the other patients weren’t very happy.  Oh well, the doctor was very pleasant to us so that’s good. 

The lumbar treatment was not as pain free as the last, we think Nate was more tense and his muscles were tight so they had to try a couple times. When I got to see him, his face was all red and he was sweaty.. it broke my heart. It is over though and he is sleeping, hopefully when he wakes up he will be better.  It has been almost one hour at this point.

Now we are 3 hours into it, he feels much better and the pain has subsided.  He has had 2 bowls of the healthy soup, has been drinking water and watching ‘Family Guy’.  There have been jets going by all day today, it is sort of like an air show.  They come so close we can see the exhaust coming out of the back.  Max says the military is taking advantage of the nice weather and practising drills, that’s good because I was actually kind of worried something was going on in the world – you never know.

He is up!  yeah..no headaches so far but we will take it easy the rest of the day and order in the soup and dumplings (that’s our favorite chinese dish).  He says his arms and legs feel like they weigh a million pounds…but no headache which is what we are so afraid of. This marks our half way point in the process and that is something that feels great.

I am able to post pictures again so I just chose a few from the last few days because today is not very exciting..  I wanted to let you know that the comments you write to us all come in together no matter what date they are posted, so there are no worries if you get the dates mixed up. We still get them at the same time; we get them and approve them to be published.  Lovingly, Nate & Nan

13 comments June 12th, 2009

No pictures yet :(

The pictures still won’t go through!  Max assures me he is working on it so hopefully tomorrow..sorry Today was a good day for therapy, the acupuncture is still painful but it is part of the whole process and we really want it to work, so he will keep going. Tomorrow is our 3rd treatment and a day of laying flat again, more ‘family guy’ for Nate.

I spent an hour with Yolanda today who is part of our interpreter team, she is trying to learn English and wanted to practice so we used an electronic translator and my English/Chinese dictionary, it was pretty fun.  Afterward, she asked me if I wanted a ‘beauty treatment’ so I said of course!  What I got was a neck and back massage, what a great trade.I will do that any time I also found out that our Chinese friends chose their English names because most foreigners have trouble pronouncing their Chinese names. We suspected this but it’s good to confirm.

We met the family from Argentina, Thelma is 40 and her brother Jeraldo is 25; both have SCA type 3 so that was interesting.  Both are in wheelchairs and had their first treatment yesterday.  They spoke English very well so it was easy to talk. Hopefully we will get to know them better as well, it has been fun learning of new cultures.

Take care and best wishes to everyone, xie xie (thank you in Chinese)

Love, Nan & Nate

10 comments June 11th, 2009

Wednesday, June 10th

Hello again, it has been a full day with the addition of an eye evaluation to our routine.  We were taken to a very old, crowded, hot building.  The surprising thing was the modern technology in the old place. The doctors re-did the retinal and optic nerve scans that we had done in the states plus did an acuity test.  Instead of letters on the chart, there were letter ‘E’ s  facing different directions so Nate just had to say which way the letter faced on the smallest line he could read.  We went right to the OT from there and we were a bit early so Jasmine wasn’t there.  The director used the time to have us listen to her favorite American singer….it was John Denver!  A girl after my own heart.  She and I sang along to ‘sunshine on my shoulders’ and ‘rocky mountain high’.    One other thing we discovered, Utube is blocked over here.

We went to Pizza Hut!  It was very good, for the Chinese it is gourmet dining.  It was a modern building with air conditioning   We had fruit smoothies, stuffed crab and pizza with shrimp, green peppers, ham and corn.  It was one of their specialty pizza’s. The bill was 170 yaun which converts to approximately $25.  The soup we have at lunch is only 6 yaun for 2 bowls which is only 88 cents!  They also do not want tips, not sure why but they won’t take it.  I am having some problems uploading pictures but we have the technology team working on it so hopefully that will be fixed soon.  I went to a new supermarket today with Susan from Hungary-it was insane.  It was so crowded, people were pushing and cars were honking plus the crazy bikes… I am lucky I made it back!  Nate stayed home because he just finished OT.  I think I will stick to the little market that we can walk to, although the new place was bigger and had lots more stuff.  Here is a note from Nate..

Hi Everybody!  This is Nate.  I know I’ve been letting mom do all the writing but she has been reading the comments you have sent to me .  I am so thankful for the love and support you have given me.  I have been having doubts about why I have come here but I realize now that it is a small price to pay for a big reward-a sense of being normal.  I look forward to getting up in the morning and reading the comments you have left for us…I am very grateful.  I’ve been working very hard as you all know and I hope and pray that it will pay off, the extra thought and prayers from all of you helps to push me along.

lovingly, Nan & Nate

10 comments June 10th, 2009

The sun is shining in China

Good Morning to everyone back in the states!  Today was a very good day for us, Nate did great in PT and OT.  I know its wishful thinking but we all saw some slight improvements today.  He also had alot more energy, he came back to the room and repeated his pt exercises again so he doubled his work out. I tried to video tape his session because he was walking so much better but apparently the file was too big to download in this site.  That was all the pictures I took because I was so excited to show you the improvement in his balance.  I’ll take more tomorrow.

We had a very social day, we made friends with the family from Egypt.  The mother is a OB doctor and the father is a pediatrician, their son Kareem has autism.  I had to ask if she knew Samia Asaad, I know Cairo is a huge place but you never know!  (Samia is our good friend from Grand Island who is originally from Egypt)  She didn’t know her.

We also finally met our neighbors from the United States.  They are from Montgomery, Alabama but originally from Syria.  He is an ER doctor and she and her 8 yr old daughter stay home. They have been every where in Shijiazhuang, there is a zoo and a botanical gardens that they recommended.  The other ironic thing is that Lana (the mom) is here to be treated for Stargardt’s disease which is the same visual disorder that we thought Nate had.  We had to come all the way to China to meet another person with Stargardt’s!  They are all very nice and we stayed with them about 2 hours talking.   They also took a picture of the “Ass Meat” on the menu and sent it home so I didn’t feel like such a goof!  He also reviewed all of Nate’s medical records which was interesting for us.  One thing that the neurologist didn’t tell us was how accurate the SCA type 7 test that we took was – it is 98% accurate.  So that is good to know. 

Well, our soup is here from the restaurant so I better go.  Sorry I don’t have a picture but I will get some more tomorrow.  Take care, Love…Nan & Nate

11 comments June 9th, 2009

Treatment #2

It is a cloudy, rainy day here today – a perfect day to have to stay in bed and lie flat.  The lumbar injection went fine and was pain free for Nate.  He is 3 hours into the 6 hours of laying still and so far so good.  He is watching “Family Guy” on the ipod and I hear him laughing once in a while.  We ordered lunch in our room today and they had a different menu for us to look at.  I took a picture for you, I thought the 11th one from the top looked really good…:)  Also the ‘spare ribs Man style’ look interesting.  On the second picture it was the ‘Naked oat with mud carp meat and garlic’ that caught our eye.  I am the typical tourist taking pictures of everything!

Today has been especially challenging for both of us. Not only the lumbar puncture but facing the truth of why we are here has sort of hit us both.  Traveling and being in a new place has been a great distraction but I guess the reality was bound to hit.  We feel your love and positive thoughts which will continue to help us through.  Thanks.  We miss home!

12 comments June 8th, 2009

Out on the town

Today was a day off of therapy and treatments so we decided to venture out of the hospital area. We went to the shopping center. It was really just what you would imagine to see in China.  Crowded streets, loud music and lots of bikes and people, plus really odd stuff to eat on a stick. (I’m not sure but I think I saw frog legs).  Nate tried something that looked and tasted kind of like a corn dog. We really stood out as different, mostly people just stared at us and waved, they were very friendly.  Nate got lots of giggles and smiles from girls, it was cute.  There seems to be a KFC on every corner and we saw 3 McDonalds and one Pizza Hut.  The shopping mall was 7 stories but we really didn’t find much to buy plus they did not take credit cards so no worries there, Doug   Then we went out on the streets and just walked for blocks looking at everything.  We did not see any rickshaws but we did see these bike carts, we had no idea where they would take us so we didn’t ride in one   The one really good thing we found is ice cream!  Yeah!  It was soft serve and they sold it in a cone with 3 different flavers mixed (purple, yellow and pink).  To cross the streets you have to go underground and there is stuff to buy from venders under the streets, Nate said it is like this in Europe too. 

Tomorrow morning Nate will recieve his second treatment via the lumbar injection.  We have downloaded a movie on itunes so he could watch it on the ipod if he can, otherwise I guess he can listen to it while he lays flat. For dinner tonight he will have a special soup that they prepare to help him stay healthy during the next few days. Many people have a fever and feel sick after this first lumbar treatment and the soup is supposed to help. 

We are thinking of you all and hope you are having a good weekend!  Love, Nate & Nan

9 comments June 7th, 2009

Okay, this has been one of our slowest days…but we did have one funny thing to share.  We ordered roasted chicken with rice tonight and it looked pretty normal at first but as we were taking pieces I noticed that the chicken still had it’s feet!  Not only that but his head was there too just sortof tucked around the side!!  I think I will be a vegetarian

Here are some more pictures of the hospital grounds.  I’m not sure how many total buildings there are but there are at least 5.  In the mornings and afternoons these men sweep the sidewalks and streets with these long brooms, they pick up any trash and sweep up leaves and stuff.  It’s very clean, maybe we should do that at home too and create some jobs, ha ha. We are 13 hours ahead of you all in Nebraska so our morning is your night.  We are living in the international wing of the hospital that has western toilets and it is sort of like a small apartment so we don’t get on each others nerves too much.  We do fight over the computer though. 

I almost forgot, the acupucture today was not so bad.  I even had it done on my knee.  It was really pretty neat and not painful for me, of course it wasn’t in my head and neck like Nate’s was.  They did it on his legs today and it was good, he is not as worried about it now.  Take care! talk with you tomorrow.

6 comments June 6th, 2009