Nate’s Ataxia Blog

we love Bejing!

This is a beutiful city and one that I would recommend visiting any time   We have had so much fun, Nate has been headache free which is great and we even got in an hour of PT in the pool. I was using my memory of water exercise to work him out - he was very good to try all the stuff I could remember.  We also went to Silk Street which is a famous market in Bejing, famous for all the ‘great deals’.  It was a lot like Mexico except that the sales people were very polite, they called Nate ‘handsome boy’ and me ‘pretty lady’ – I’ll buy anything from someone who calls me that!  Not really, we were good bargainers I think.  Also, Tianamen Square and The Forbidden City are just a 20 minute walk from our hotel. It was really crowded though and long lines so we decided to get up earlier tomorrow.  We saw our first Americans too, a church group from Pennsylvania.  They were fun to talk too….it was sweet to hear English with no accent!  Well, we leave tomorrow and will be glad to get home although it means keeping up with exercise and PT for Nate and his senior year of High School will begin in August. 

We will update this post weekly or monthly depending on progress for those of you following for health reasons of your own.  I will speak for both of us when I say this trip was definately worth the time and money for the treatment.  While it  is great to be a pioneer in stem cell research we have both recieved personal growth from this experience too.  Thanks for the support, prayers and good wishes – it has meant A LOT to us.  Love, Nan and Nate

A Subway!!

9 comments June 30th, 2009

Hello, we made it fine to Bejing and have been enjoying the hotel this evening.  The first thing we wanted to do was go swimming, that was great!  The hotel package included 2 massages so we also did that and had dinner.  We can add rabbit and shark fin to the list of new things we have tried.  We haven’t decided what will be our first American food, there are so many things we have missed.

Nate is feeling good today, I believe his balance is truly better.  It’s the small things we are noticing, the tremors in his hands have stopped and also he walks faster and with his feet closer together.  It was sad to say goodbye to all the good people we met but it also felt good to have finished.  The end picture is our friends from Alabama, Lana (the mom) is being treated for stargardts disease. Last night Dr. Hung and her husband surprised us and took us out for dinner, it was so good..we had dumplings,  rabbit and pork.  The pork looked like a pyramid, it is filled with some kind of vegetable but it is one long continuous piece of meat (reminded me of bacon) shaped & served with steamed bread.  We were stuffed!  One thing we noticed already is that things in Bejing are 3 times more expensive, I think we spent more today than we did all month.  Tomorrow will be site seeing..Yeah!

3 comments June 29th, 2009

Saying goodbye

Yesterday and today have been full of visits in the hallway and exchanging of addresses.  Each patient here is addressing their own issues yet we have found strength in sharing this part of our journey together – a side benefit from stem cell therapy in China you could say.  The people from Alabama along with the mother and son from Egypt will share our van tomorrow, though they are each leaving to go directly to the airport.  Also, our guide Frank is leaving China to move to Australia to begin his own massage business, how exciting for he and his wife.  Today we went to the ‘curiosity shop’ which was really just a market of all things Chinese.  We didn’t get to stay too long because it was so hot but we were treated to the preparation and service of Chinese tea.  The owners wanted me to pay them with American dollars so through our guide we came up with a fair price, unfortunately that leaves me with $3 to come home with.  I am sure I can exchange Yuan for Dollars at the airport.

Nathan is feeling good today, only a slight headache when we were on our way home from shopping., probably the crazy taxi ride.  I would never try to drive in China.  After he laid flat for a while, it went away..we will have to be careful while we are sight seeing. Well, take care and I will write more from Bejing!  Love, Nan & Nate

4 comments June 28th, 2009

Treatment #6

Boy, it seems like I have been waiting a long time to write that!!!  It was a good day, uneventful and quiet.  It was spring cleaning on the floor and they washed windows so of course we are having a thunder storm tonight.  Funny how that always works out.  Nate is feeling good, I can always tell because he starts to get smart..ya know-anxious to get home too.  We were able to plan our trip to Bejing and will be staying downtown close to the Forbidden City and Tian’an Men Square so we can be tourists our last days, how exciting!  I just hope the headaches stay away, today was free most of the day so that’s encouraging. 

When we get home, you may be wondering what to do or say.   We have had quite a blow so we understand that it is difficult to know how to react.  Just remember, we are the same friends you had before and we plan to always be.  We are approaching this with a positive attitude and we will always appreciate your concern, comments,support or advise.  Never hesitate to say hi or just talk,  be at ease.  Thanks again for everything and especially for caring about Nate & helping him feel supported and strong through this.  Love, Nan & Nate

13 comments June 26th, 2009

Peking Duck

Peking duck has been in China since the 1330′s and is a national dish of China.  It is a specialty of the Bejing region.  The ducks are bred just for this meal so not just any duck that can become a peking duck.  The restaurant we went to was quite a ways from the hospital and it was good to see a new part of the city, it wass very modern and classy.  We saw the art district -  I would love to go walk the streets, maybe if Nate feels good on Sunday we will go there.  We began our dinner by choosing the duck which are hung and glazed before they are cooked in the open fire.  We then  picked some dishes to accompany it, I am posting pictures of some of the dishes that we did not choose.  The duck is sliced thin and served with rice pancakes (tortilla’s) spring onions and hoisen sauce then you roll small burritos.  We had shrimp, beans, corn, and eggplant with pork.  Fresh corn juice is also a specialty of the restaurant.  I have never heard of this but we should try it in Nebraska we certainly have  lots of corn! We were stuffed and it was a great evening with new friends.

Today has been uneventful with no headache. Our friends from Hungary left this afternoon and there are new patients coming from America on Saturday so I am anxious to see where they are from.  Also some people from Ireland will be here, the world is just coming to us isn’t it?  But we are leaving soon too.  Max has asked us if we would stay a night in Bejing before we leave on Wednesday, we are excited for that experience-our last hoorah!  We told him we want a 5 star hotel…we’ll see what we get.   Love, Nan & Nate

5 comments June 25th, 2009

Our dinner last night was so much fun, it reminds us of the ‘Melting Pot’ fondue place although they use water instead of oil.  Frank chose the meats, spices and sauces for us – there was so much to choose from and all in chinese so we could have never gone without him.  There is also an order in which you add things to the pot so it was good to learn about that. Maybe I could try it at home, its the sauces I couldn’t replicate though.  Frank’s sauce was spicy, Nate’s garlic and mine was a mixture of 5 different colors.  I have no clue what it was but it was very good.  So you first put the meat or veg into the water to cook then put it into your sauce and eat it.  The beef was first, then cabbage & potatoes, then shrimp, then mutton, then tofu

.  Afterward, we had these sweet little cakes-kind of  like a bran muffin.  There is a street market in front of the restaurant and we walked along that to the end of the block  – it was so interesting to be emmersed in the culture like that. I felt very welcome and sort of  ‘special’ I guess is the right word.  They are as curious about us as we are about them-it’s wonderful.  Frank is a great interpreter and we were able to exchange a few words with some of the people who wanted to talk.

Nate is doing good this morning, the team came in for another full evaluation of his balance and we saw some marked improvements.  I wish I could show you video because seeing is believing.  Our goal from the beginning was to keep this condition from progressing so any improvemtent is a real bonus. He had a two hour PT session today and has already had acupuncture.

 We met the family from Oman last night on our way out, I don’t know why I was nervous about meeting them but I was and I said something like ”Nate and I are going out for a Chinese dinner ”.  The dad just looked at me and said ‘Isn’t every night a Chinese dinner?”   OMG!  What a dork I am!  It still makes me laugh.  They laughed too and are very nice.  Well, take care and I will write about the duck tomorrow!  Love, Nan & Nate

11 comments June 24th, 2009

Moving on…

Nate felt so much better today, it was a good day.  A small headache started this afternoon but it subsided in an hour or so which is a good sign.  We are taking it slow but are ready to move on to better days.  I am posting a picture of one of our girls that stops by to practice English.  She asked us to help her pick an English name so after suggesting a few;

she has picked ‘Amy’ which I think suits her very well.  Have you thought about picking a new name for yourself?  It would be kindof fun. We tried to ask them to name us Chinese names but they start out with their family name so we were stuck right away.  We sort of got side tracked on that whole explaination so I will have to try again for names.  Also I am posting Nate playing basketball with a soccer ball and an upside down stool, pretty funny but it was a slow day so everyone played. 

Tonight, Frank is taking us to a traditional Chinese ‘Hot Pot’ .  I am so curious to find out what this is, maybe I should eat a pbj first!   And tomorrow, Dr. Hung is going to take us for the best Peking duck  in the city so our social schedule has resumed   I wasn’t sure how late we would be out tonight, maybe even as late as 9 pm who knows.  We lead a quite life here.  Love to all and thanks again for reading and keeping up with us, I don’t know what we would do without this contact!  Nan & Nate

7 comments June 23rd, 2009

Treatment #5

Treatment #5 went well, besides being  a long and boring day.  Today will forever be my definition of doing nothing…seriously.  Nate finished at about 11 am and slept for almost two and a half  hours which was great!  Because of his experience with headaches, they have left in his iv in case they needed to give him more fluids but besides that he is up and around with no pain which is also great   I don’t even have any good food stories because he has just eaten soup and a pbj.  It’s ‘hello kitty’ time for me.  ha ha  Here is Nate..

Hey everybody, it’s Nate again.  This hasn’t been the easiest experience for me but I am sure that in the end it will be worth it.  I am counting down the days till I come home. Today was my last experience laying on my back for 6 hours, I am glad that I don’t have to do it again and I am excited to see what will happen, if it helps me get better I will gladly come back and do it all again-I will do what it takes to get better.  Thanks for your constant support.

Love from both of us, Nan & Nate

11 comments June 22nd, 2009

Hello, I hope you all have a peaceful Sunday.  Our trip to the country side was scheduled today at 10:30am and we got on the bus with everyone, by the time they loaded the 4 wheelchairs and patients Nate began to feel bad so we did not risk it and got off.  The weather today was so hot, 98 degrees F!  We will try another time.   Nate and I did venture out later to the market.  Did I say that I couldn’t find milk?  Well, half of the produce section is milk I just didn’t recognize it.  It is in boxes on the floor and there are so many different kinds.  A friend named Bill came with us and helped us navigate the store better. We got fresh fruit, milk, bread and some sweet bread we think might be similar to donuts for in the morning.  Tomorrow is the last lumbar treatment…thank goodness.  He will have 8 days to recover before our travels home.  Yippee!  I have not started the countdown yet, I will wait maybe till the last treatment on Friday so the time doesn’t go so slow.

It seems like I talk about food a lot, sorry.  Our days have slowed down considerably as we have gotten into the treatment.  We are planning some trips out the last few days in order to spend the rest of our Yuan.   Sending good thoughts to each of you, Love, Nan & Nate

7 comments June 21st, 2009

Today was a day just like yesterday.  The head ache came on around 2 pm but he went to therapy at 3:30 anyway which didn’t work out so good.  We left early.  I had a bit of a melt down when the doctors came in, it’s just so hard to see him hurting.   They have been treating Nate like a king this afternoon - he has recieved ice cream, milk, tea and they even ordered pizza for him for dinner.  They are worried that he is not eating enough I guess which could be true.  I suppose we don’t go to the supermarket enough, its so confusing.  I need to be more assertive in asking for things too and letting them help me make a list in Chinese so I can get help when we get to the market.  So…we learned more about communication.  They also think it is too hot so we have had the air conditioner fixed…I didn’t even realize it was broken, I thought it just didn’t work very well!  Again…I need to be more assertive.

The pizza was good and I filled my hello kitty mug again! Maybe I will even have a second tonight… it was a rough day.  We are going to watch another movie.  I hope we own stock in itunes   Take care.  Love, Nan & Nate

10 comments June 20th, 2009