Mike’s Ataxia Blog

Heading Home 11/16/08

November 22nd, 2008

Sorry about the delay. The site was upgraded, and the posting software had to be debugged.

I’m sitting in the Beijing airport, with 3 1/2 hours to go until I board my flight to Chicago.  My day started at 6 am, after 3 hours of sleep.  I always do this, get an early flight and start packing around 10 pm, stupid. The flight from Qingdao was uneventful, 9:30-11.  Chinese airport security was just as thorough leaving as coming.  I thought it was just customs.  Once again I was frisked within an inch of my life.  At least this time, it was by a cute girl instead of Yao Ming’s big brother.  I stopped at MacDonald’s, and they actually confiscated my soda!

So, I’m sitting here, waiting, and I just ate the best ice cold Big Mac I ever had.  Since I’ve got such a long wait, it seemed the perfect time to continue this, at least as long as my battery lasts.  Once again, I’m struck by the kindness and patience of the Chinese people.  The airline provided a wheelchair and attendant again, and I asked to stop 3 times.  At the McDonalds, at a rest room, and after we’d passed it by 50 yards, a shop to replace the afore mentioned soda. In the states, they probably would have done it, but by the 3rd stop, it would have been grudginly, at the least.  This lady couldn’t have been nicer, it was as if she had nothing to do all day but take care of me.

I am pleased to say that the wheelchair was used only for the carry on bags.  I walked, or pushed the baggage cart with the big bags, leaning on it, through both airports.  Beijing has the biggest airport in the world, and I felt like we saw it all.  It wasn’t easy, but a month ago, it would have been impossible.

I left the hospital quite early, avoiding extended goodbyes ,which I’m not very good at.  Dannie and Bonnie were up, and they were my send off committee.  Dannie and I hit it off from the start, and I’ll miss her and Jessica.  I really hope Jess gets some help from this; she’s as sweet as she can be, and fate dealt her a real stinker of a hand.

Well, onto a brief list of my improvements.  As told previously, I ran, walked a heel to toe straight line, rose from a sitting position with 30 lbs in my hands, did squats holding that thirty lbs, and held them for as much as a minute, and walked through a large airport.  I also walked up and down a short flight of stairs normally (one foot on each step instead of two) without holding the rail.  Jason told me I would do that and run before I left, and I really didn’t believe him.  My fatigue and dizziness are basically gone, my balance is much better, I can recover from a slip.  My speech is much better, pretty much normal (although not announcer normal) when I’m rested, I have a much easier time picking up something off the floor without holding on, I’m better, at carrying a cup of tea or soup across a room and I can play the violin again.  Okay, I never played the violin.  I still can’t write well or sing, but I’m working on it.

I hope this is only the beginning, that engraftment does occur in the coming months. I’ve basically turned the clock back over a year, and I’m hoping for more. I just wish I’d come here sooner.

Just landed in Chicago. The flight from Beijing goes faster than the flight there, but it still lasts forever. Now, my 2 hour layover has turned into 4 hours, making the total trip time 26 hours. The security in Chicago is almost as bad as Beijing. Next stop, New York.

Seeing my family was kind of surreal. I feel like a fish out of water. Funny how things never turn out like we think they will. Equally strange (not) sleepiing in my own bed. This jetlag is rough, adrenaline kept me going Sunday. Monday, I felt like I’d been run over by a tank. Walking through those airports was a mistake.

I was warned that the jetlag and fatigue would cancel out the improvements I had, but actually experiencing it is a still a jolt. I feel like I never left, and not in a good way. Guess I’ll just have to sleep it off. They say it takes over a week.

I’d like to thank Dr. Chen who performed the spinals on me, Dr. Bing, who was my main advocate for those spinals when they wanted to go with IVs, Dr. Tonny, my primary physician, Dr. Lisa, Dr. Frank, and all the other Drs. whom I didn’t even retain the names of (I knew I should’ve mentioned those cognitive problems!).  My PTs, Jason and Martin, who helped me put those stemcells to work, Wendy who seemed to be at the hospital 24/7, Jack, who went above and beyond the call of duty for me more than once, and Amanda and Lucy, who listened to me ask for pizza or dumplings about 8,000 times, all the nurses who were so kind to me, and all the fellow patients and their families, who became very good friends very quickly, which I don’t generally do well.  And of course my family and friends for all their support and love, especially my mom, my sister, my aunts Sandy and Sylvia, and most of all my wife Susan. And to all those specialists who said “you’ll be sorry”, I give a big fat raspberry.

Well, that’s all for now, for photos, go to qingdaochina.shutterfly.com.  I’ll update this periodically to chronicle any new improvements. Thanks for listening.

Entry Filed under: ataxia,Uncategorized