Day 22 11/6/08
November 6th, 2008
I got 9 hours sleep last night, and I’m better then yesterday but I’m still beat. The doctors came at 8:30 and I was still half asleep. Dr. Frank, who speaks more English than some of them, asked why I wasn’t on Skype. They told me that spinals 2 days apart wasn’t possible. In fact, they balked at Friday-Monday-Friday at first, but when I pointed out that I’d had no ill effects from either the successful or abortive attempt, they agreed that if that was the case this time, they would do it.
PT was better than yesterday, but far from my best. Jason had Dr. Frank translate for him, and apparently I’m working too hard. So much for the football mentality. But now I get the message, and I won’t push it. I did exactly what Jason said, and no more.
After PT, I went to the Bank of China to cash some Traveler’s checks. Their idea of a disabled ramp was a 45 degree incline. You’d have to be Superman to wheel up there. I had trouble with it myself. I got in there only to find that they wouldn’t cash them! Seems that I had signed in the wrong place. But not to worry, they would be happy to hold them and cash them, in 45 days! They were even less helpful than American banks. If I hadn’t run into Lucy (translator) at the bank, I would still be there, trying to figure out what was going on.
After I got back, I found out that I could use my debit card at bank machines in the lobby of the hospital. Problem solved. Now I can get gifts for my wife and kids, and the doctors. It’s “advised” that you do so, especially if you plan on coming bsck.
Which leads me to my next point: if I do have to do this again, they’ve been very nice, but with the spinal problem, I’m not sure. There’s a program called Cell Medicine, that operates out of Costa Rica, that is doing autologous (from your fat, not your hip) and umbilical stem cells simultaneously, along with Physical Therapy. That’s intriguing, and better yet, it’s not 7,000 miles away from home. I had read about them before, but until recently, they’d had no experience with ataxia. I shall re-examine them. Because if the vitamin D therapy doesn’t work, I’ll be needing to do this again. Depending on how well the engraftment in 2-3 months goes, I may have to either way.
Entry Filed under: ataxia,Uncategorized
6 Comments Add your own
1. Jeff Crowe | November 6th, 2008 at 10:43 pm
I love the “anti-spam” words….today’s is enervate….great word. Anyway, sorry I haven’t written in a while. I HAVE been reading, just not responding. Sounds like things kinda hit a wall for you what with the lack of sleep. You’re exactly right. Ataxia does seem to rear it’s head more if you neglect sleep. I always have that “problem.” I usually stay up late (12-1 am) and then it’s up at 6 every morning. I’ve tried getting to sleep earlier, but for some reason, it just doesn’t work. Oh well.
I am so glad to hear about all of the improvements, especially the “running.” By the time I had my 5th treatment, Martin had me TRYING to run AND jump (that’s another difficult one to do…). Keep it up.
I have heard about the Costa Rica place, but never researched it. All I heard was embryonic stem cells and no PT, so I never really looked into it. I will now.
By the way, I’m sorry I neglected to tell you about the ATM in the lobby…that one AND the one at the RT Mart came in handy while we were there. I don’t know if they told you, but for some reason Jack said to only use the Bank of China ATM. Something to do with fees or something.
Also, I haven’t heard you mention the Jimo Mart. It’s a MUST while you’re over there. I went 4 or 5 times and my wife, Leslie, went several more times with “the girls.” They have EVERY kind of purse/wallet/backpack that you could imagine. Not to mention jade, shoes, clothes, pearls, knives, crack pipes (lol), nick-nacks of every shape and size, and any other “thing” that you could possibly want / need. I know this sounds crazy, but we came home with 17 Coach purses, 12 Rolex and/or Tag Heuer watches, and over 200 DVD’s. The “Coach” purses (of course they were fake) were in the neighborhood of 100-200 RMB (15-30 US$), the watches (very nice fakes) were also around 100 RMB, and the DVD’s were 7 RMB (THAT’S ONE US DOLLAR!!!). Of course it took MAJOR haggling to get the prices that low, but it was worth it. We got everyone a “gift” for very little money. Anyway, let me know if you’ve been or are planning to go. It’s a unique experience, to say the least.
Sorry for all of the rambling…I feel like I had to catch up. Good luck with the rest of the treatments. I hope all goes well for you!!!
Jeff
2. Anahid | November 7th, 2008 at 2:22 am
Ni hao Mike — I’ve caught up on your blogs – looks like steps forward, back, a jog/sprint, peeling skin, KFC, the cleaning lady, nurses behind a chained door…so much! The image of you talking with the patient’s Mom and then her noticing the big bubble in your iv and flicking it out is way too chilling for me. God. Sounds like time is d*r*a*g*g*i*n*g over there. Maybe you can start learning to read/write Chinese?
Continued good luck w/treatments & PT, enjoyable times w/new friends and courage during hard times. I suspect you’re going thru both a physical AND spiritual/emotional transformation, yes? I think we can get so busy keeping up with our lives and those around us, and the world’s…that we lose touch with who we are, what’s important, what we really want. Only alone, away from everything and everyone that is familiar to us, can we slowly be reacquainted with who we are, how/what we think, what we can overcome/survive, what we can achieve. You are doing it, Mike. In spades.
So – life on the other side of the world: We had a foster placement for the past 6 days/nites — 10month old Evie — who was an absolute delight. Looked like we’d get to keep her for a few months but at the last second she went to a kinship hom (her Aunt) until her Mom can get it back together. A shock, a relief, sad, ok….confusing.
OBAMA WILL BE PRESIDENT. Omg we are so thrilled. Some acceptance speech quotes I printed out for my cube “Our ideals: democracy, liberty, opportunity and unyielding hope. Out of many, we are one. Our stories are singular, but our destiny is shared, and a new dawn of American leadership is at hand” Such utter relief. No McCain but more importantly….no Palin.
Will close on that. Good luck with the rest of your time at Camp Chengyang. HOME STRETCH. I wonder how long it will be, back in the states, before you’ll have an appetite for Chinese food? I remember when your Mom picked me up at the airport in NYC when I returned from being in Armenia for 3months. We drove straight to Burger King because all I wanted was a Whopper! I wonder what your first meal will be when you get back. That’s something you can do if you still can’t get your palm pilot games going….create your fantasy menu for each meal, of each day for the first week at home!
Much love and courage to you. You’re in my thoughts.
xoxoxoxox
Anahid
3. Geo | November 7th, 2008 at 11:02 am
Hey Man-Wow tough couple of days. Gotta get your zzzz’s. I hope you will get the spinals rapid fire as it were. I could always tell when you were not getting enough sleep back here in the states. Most of us in the non-ataxia world don’t do very well on
5 hours sleep. I am sure you are giddy with the thoughts of sleeping in your own bed with your spouse and anywhere from
one to three children! I just got off the skype with you. You looked
and sounded pretty good. I got a great vibe when I saw your smile when your PT walked in. He looked like good guy.
My little ones are “off track”, thats North Carolinian for out of school. Since they go to year round school they get nice 2-3 week breaks all year long. I have very resiliant children. They have addapted to their new surrounding pretty well. They are
hanging with me watching Wow Wow Wubzey. I am rivited!!
Some of the kid shows I can stomach….Wow Wow ain’t one of em! I can always jam on a little spongebob or even Little Bill.
I know my wife sent out that stupid press release from my office.
It’s a bunch of bull$*%T. I hope NYU doesn’t come looking for my sheepskin. They got that Masters Degree stuff from my resume.
A document that utilized more fiction and creative writing than the boys over at Dreamworks. I shoveled it pretty good on that one.
Well the whole group here in NC is looking forward to Thanksgiving with everybody!!!!! I love you and miss you.
4. Deb | November 7th, 2008 at 11:22 pm
Hi…just working this morning and can’t get focused, so thought I’d pop on and say Hi. Hope you’re relaxing and feeling good on this Friday night (well, Friday morning for us stateside). I know you’re counting the days. Has a month ever seemed so long?
Hang in there. You’re doing awesome work and awesome results are sure to follow !
I’m holding this little cartoon in my hand that I cut out of the paper (I think Melissa will appreciate this)…it shows a grumpy guy, arms crossed, major frown on his face sitting on the couch. Behind him is a happy, cheerful looking woman (probably his wife) and she says…”I thought you were going to leave the country if he won…will you be gone by dinner or should I set a place for you?” I’m about to put it up on the fridge. I tend to doubt that Earl will see the humor in it…but I do !!
Funny thing…the “anti-spam” word is “impeach”…hhhmmmmmmm, very interesting !!
Anyway…I’m counting down the days for you. I know everyone is anxious for you to come home…especially everyone that gets to see you
5. sylvia | November 8th, 2008 at 3:48 am
Okay…my anti-spam word was ziggurat! I had to look that one up..sheesh…such a challenge to my limited vocab! I am planning to build one for you Mike…heheh. I am deliberately making all interested parties look up the word (unless they can understand what it is in context!)…why should I make it easy?
I am still basking in post-election Obama euphoria. All that is missing is a cigarette, because I am already feeling sleepy. We could have never passed the stem cell proposal without his organization getting out the Dem. vote! I’m hoping that you will be coming to Ann Arbor for your next treatment, not Costa Rica or where ever.
Deb, I love your cartoon!
Geo, I loved that press release! I’m so proud of you, too! After all, it took a lot of CREATIVITY to put that resume together….way to go! Cute pic too! I can’t wait to hear the kids with their southern accents. I always loved Andy and Opie’s, although Aunt Bea’s left much to the imagination! I like this school schedule too…makes sense…wish the rest of the country with get with it!
One more good day here to work outside, so that’s my plan…soon as I hear Obama’s speech. Keep up the good sleeping, Mike!
xoxox…sylvia
6. Richard | November 16th, 2008 at 8:34 am
I could tell where your check cashing adventure was leading. That’s the one thing I could have told you about life over there. Check cashing is very far from routine. Oh well.
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