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Sure enough, a little activity has done wonders for my mood. PT in the morning, acupunture and electrowave in the afternoon. The PT is quite strenous. We start off with leg/butt lifts,so I’m balancing on one foot and my shoulders for a minute at a time (serious hamstring burn). Then “Superman” with the left arm and right leg in the air, balancing on the other knee and hand for a minute at a time, then reverse. Then fifty leg lifts with ankle weights. Then it’s on your knees playing catch “round the world” with a cloth ball.
Then it’s on your feet for “squats” holding a dowel for balance, going down to a full squat, holding it for a minute, then back up. Then a balance board, like surfing. And what I call Godzilla through Tokyo, which is walking over little hurdles (I do that one back home). Then we move over to the steps. There’s one double step, up and down, left then right, no hands. Then up and down half a flight of stairs, no hands. Twice. Then lots of heavy breathing. It all takes about 45 minutes. I’ve been doing PT at home for a year and a half, but it really doesn’t compare to this. Just completing it belies my thought that I was back to square one.
Had a talk with Wendy today, turns out it wasn’t the big boss who finally got the spinal right, it was the anesthiologist (that’s a lot easier to spell than say), and he’ll be doing the spinal on Wednesday, with a double or triple dose of valium. I also asked about a seventh injection, and they’ll let me know tomorrow.
My friends next door. Diane and Chris, brought me a present last night, McDonalds!I’m saving it. They get out more than I do; it was awfully nice.
Some turnover here, we’ve lost a few folks, and a new mom and her mother and 19 month old daughter from Capetown came in. At almost two weeks, I’m no longer “the new guy”.
This evening, 7 or 8 Drs., led by “Dr. Joe” gave me the once-over. I’m used to it by now. They did a lot of talking between themselves and even though Wendy was there, there wasn’t much translating, probably a lot of medical jargon. Dr. Joe was in his 70′s, a good 40 years older than the rest, a professor and his students.
All in all a fairly busy day. More of the same tomorrow and a spinal on Wednesday.
October 27th, 2008
I think I’ve hit the doldrums. The middle of the voyage when you’ve been gone long enough that the novelty is gone, and yet too much time remains to see the light at the end of the tunnel. Last week’s unfortunate incident didn’t help. Nor does the fact that life seems to be going on at home without me. My wife is in the middle of an extremely demanding academic schedule, my children are in the middle of their school year with sports and play dates, and I’m here, at the end of a weekend doing absolutely nothing.
There’s a big hubbub going on around here, some bigwigs are coming in for an inspection. This morning, a whole team of cleaners, nurses and interpreters swept through here, changing sheets two days after previously doing so, cleaning the place within an inch of its life, asking us to straighten up shelves and closets, refrigerators and laundry. This is not going over really well with the animals in the zoo. Excepting myself (being here alone) everyone is in cramped quarters, most with small children in tow. The last thing anyone wants is to be told to tote that barge or lift that bale. Although one does get the feeling that if there’s a failing grade, someone will be going to jail.
Tomorrow, therapy schedules are being changed. mine for the worse. My next spinal is scheduled for Wednesday, and I’m getting resistance regarding communicating with the head doctor. I’m not really thrilled about that. I do not want a repeat of Friday’s fiasco. I can feel the ugly American peeping out from under the rock whence he came.
I think getting busy with therapy tomorrow is just what the doctor ordered, no pun intended. A little honest sweat could be just what I need to kick this poor me garbage right in the teeth.
October 27th, 2008
Saturday, a day off. Went to K-Mart (not) with Jim and his wife and got groceries. I noticed something telling about big business. As my friends and family know, I’m a diet coke fiend. I bought some equivalent to the 20 oz size for 2.50 RMB apiece, approximately 35 cents. Now you know they’re making a profit on that, assume it’s a modest 5%, or 1.75 cents. That means it costs them about 33 cents a bottle. They charge a buck and a half for that bottle in the U.S., two at a deli, for a profit of about 500%, give or take. And take they do, whatever the traffic will bear.
Had dinner with my neighbors Chris, her mother Diane, and her five year old daughter, really nice people. Chris and Diane checked in on me yesterday, when I was stuck in bed after the spinal. We went to the International Buffet at a beautiful five star hotel. Once again, wonderful ambience, excellent service and food, for about fifteen bucks each. Although I could have done without the pig tails, chicken feet, and just about every part of a duck, including the sliced in half heads.
Like I said, international.
All of this would have been a lot more enjoyable, if I hadn’t taken three steps back on the ataxia front. I’m not sure if it was the fun filled spinal, the lack of sleep afterward, or the ups and downs of this wonderful syndrome that account for it, but I basically lost all the gains previously made. Even though we were warned this could happen, it’s somewhat discouraging. When you’re used to dealing with something, you adjust, but when all of a sudden you get significantly better, then backslide to where you were…
Well, tomorrow is another day off. Another day to prepare for the rigors to come.
October 26th, 2008
I would like to extend my sincerest respect and sympathy to the millions of mothers (including my beautiful bride, happy 15th anniversary, honey) who have had epidurals.
I had my first spinal today. The average procedure lasts approximately 15 minutes. Mine lasted 2 hours. I got stuck about 25 times, my back feels like they installed a sprinkler system in it.
It’s my guess that the valium drip administered is calibrated for a 150 pound person. Unfortunately, I haven’t weighed 150 pounds since 5th grade. Next time, I want a triple dose of valium, and a double Jack on the rocks.
Seriously, the doctor who began the procedure did his best, and felt terrible (although not as terrible as I did) about the whole thing. They said the problem was I had a muscular back. They finally brought in the boss man, and he got it in on the first shot, home run. Needless to say, I’m requesting/demanding the boss for the next one along with the triple and the double (that way I’ll only be a single away from the cycle.)
After the Inquisition, I had to lie on my side for the next 4-6 hours, so if there was any benefit to this, I doubt if I’ll know until Monday.
My new PT, Jason, is tough. I think he was surprised I kept up. And I was mistaken about Wendy, she is not just a translator, but the patient co-ordinator. Sorry, Wendy.
Anyway, I’m off Saturday and Sunday. This is definitely good.
October 25th, 2008
Today, a word on arrogance. And provincialism. I had a correspondence with an old friend that reminded me of all the “specialists” who were against this trip. Even told me that this might kill me, or at least make things worse. Well, so far, that turns out not to be the case. I’m not sure what motivates this, “if we aren’t doing it, it can’t be done”, or , “oh, those Chinese, they’re good at acupuncture and herbal medicine”, but I sure am glad I didn’t listen.
Well, enough vitriol for one day. I was saddened to hear that Martin, my wonderful physical therapist and acupuncurist, was transferring to another hospital tomorrow. I asked him to a farewell lunch. I thought it was a little early when he wanted to leave at 10:30. He said he would take me to a place a short walk away.
Bataan was shorter. By the time we got there, I was sure this was one last session of PT. We sat down (finally!) only to find out that this place was no longer serving food, drinks only. So we got into a cab (thank God) and went to a place that I unfortunately didn’t get the name of.
We walked into this place only to find there’s a two story spiral staircase to the dining room. This may as well have been Everest, as far as I’m concerned. I should have said no, but we’d already struck out once, so what the heck. Now, I knew full well that going down those stairs was going to be a lot harder than going up, but I figured that would take care of itself (Must’ve been the stem cells talking).
Well, I made it, which simply wouldn’t have happened, oh, a week ago. And it was definitely worth the ascent, and descent. This place looks like a country club. We sat on two love seats at a low table next to a concert grand piano. The menu had a “western food” page in English. I ordered a ribeye steak and a glass of blended fruit juice. Martin, a filet.
What we got was: a salad of cucumber, tomato, onion, cubed apples in a sour cream sauce and slices of banana. Rather odd combination that came with two slices of what I can only describe as Texas toast. I ate the fruit and the toast, not bad.
Then they brought the fruit plate, More banana, pear, watermelon, and other fruit I couldn’t identify, fresh off the vine or tree or whatever. By now I’m getting full. THEN they brought the soup, a corn(!) chowder which was actually quite good.
Then they brought Martin’s filet on a sizzling platter with all kinds of vegetables, what looked like fusilli, and a fried egg. The waitress poured a tomato based vegetable sauce over the whole kit and kaboodle. It sizzled so fiercely that Martin had to hold up his napkin like a welder’s mask. I asked him what the sauce was, and he just shrugged his shoulders.
My ribeye was a bit more sedate, about ten ounces of beef (more meat then I’ve had since I got here) on a bed of shoestring fries. There was a brown sauce on the side. I don’t know what this stuff was, but if I could patent it in the states, I’d be rich. It was beefy and spicy and rich without being cloying. I poured it all over the steak and devoured it. By far the best meal I’ve had here.
The reason I’ve gone into such detail was the check: 230 RMB for both of us. That’s $33 U.S. folks, no tip allowed.
First spinal tomorrow. I can’t wait.
October 23rd, 2008
Don’t know how long this will be, as I’m so tired I can’t see straight. That 2 hour nap yesterday kept me up half the night, and I woke up so wiped that PT was really hard. So today I stayed up… so I can sleep tonight(?). I can’t take full advantage of the PT if I’m the walking dead. Can’t burn both ends of the candle like I used to, half age and half ataxia (although the line is blurred a bit.)
After the three therapies, didn’t do much of anything, watched a movie to stay awake, and I spent some time with the kids here. One little boy kept asking me to sit on the floor with him. When I told him I couldn’t, he asked me to pick him up, I had to tell him I couldn’t do that, either. One of the things about this garbage that bothers me the most is my inability to pick up my kids. Well, with a little luck, that will change.
I saw Jim and his wife today, he was hardly using his cane. He’s looking forward to Friday’s stem cell infusion even more than I am. And why not? That’s why we’re here.
So let’s get on with it.
October 22nd, 2008
Before I came over here, I worried that I might be making a very expensive mistake, sort of like buyer’s remorse before you have what you bought. Well, I don’t feel that way anymore. Today, I was talking better and basically using my official Heidi walking stick as a safety measure only. Rising from a sitting or prone position was much easier, and I had a lot more energy. In fact, so much more that I kind of overdid it.
After lunch, (finally couldn’t look at another dumpling, switched to fried rice) I went into town to have my computer checked out and go grocery shopping. One of the interpreters, Wendy, took me. Her fiance, Brian, came too. Wendy is great, her job includes a lot more than interpreting, everything from the day trips with the inmates to taking care of the kids. When I asked how she and Brian met, I was stunned to hear that he was a former patient. He, too, had ataxia, a genetic form, SCA-1 I think he said. I couldn’t believe it! This man seemed completely normal, from speech to balance to walking. Now he did say that his case was milder than mine, and that he had had 2 sets of treatments, 6 and 4 injections (I think he came back the second time as much for Wendy as for the treatments), but the results were amazing.
Anyway, after an afternoon of computer doctoring and shopping, I was really wiped out, and sure enough, I noticed more of a problem walking, but not as much as before the stem cell infusion, 2 steps forward and 1 back. But after resting up a little bit (okay, I was dead to the world for 2 hours) I was right back at that higher level of function. I’ve known for a long time that rest has a lot to do with this condition, and that hasn’t changed, but I’ve only had one treatment, and an IV at that.
Got a different kind of pizza for dinner, and damned if it didn’t have corn on it! What is it with these guys?
October 21st, 2008
Well PT and Electro therapy were easy, as was acupuncture. I’ve been doing all 3 for a year and a half, I guess practice does make perfect. Martin, who runs PT and acupuncture, is excellent.
And then, there was the first stem cell treatment. Kind of anti-climactic, being just an IV, but I do feel better. The hardest part was the little girl who reminds me of one of my own daughters, who screamed the entire time. It breaks your heart to see all these poor kids. My friend Jim, who is on the same track, and I felt so helpless. You wish you could do something, anything. And yet, a few hours later, she was happy as a clam, and her Mom noticed a definite improvement.
For some reason, my computer refuses to recognize its own DVD player. Probably the jostling it got on the plane. I was supposed to take it for repair today. but by the time we were ready, I would’ve had to leave it overnight. Not!
On the food front, I got pizza again tonight for dinner. It had corn on it.
I’m looking forward to my first spinal infusion Friday, spring training is over, bring on the regular season.
October 20th, 2008
I think jetlag has hit. Yesterday, I ordered a pizza for dinner and lay down to read. The nurse woke me at 5, I thought it was morning,and why did I sleep with my clothes on? Last night, I stayed up ’til 2 talking on Skype, woke up late and had my kids vey peeved with me for not answering their calls. Maybe I’ll adjust by the time I leave…
After several days of doing nothing, finally get started tomorrow. Acupuncture at 8:30, electric wave therapy at 9, physical terrorist 9:30-10:15. And…1st stem cell injection in the afternoon! It’s only IV so it should be cake. 1st spinal is Friday.
I’m starting to notice more subtle differences between here and home (US). Went downstairs for X-ray and they had the lights out in the corridors. No hot water between 10 pm and 8am. And some not so subtle ones. Everyone is in a hurry, but they’re extremely polite. Even the taxi drivers are nice, they honk their horns, but it’s not in anger, like a NY cabby. All the people I’ve run across, from Drs. to cleaning ladies are nice. I must say, it takes getting used to.
Just had my temp taken for 4th time today. It lends a whole new meaning to “stick it in your ear”…
October 19th, 2008
Getting settled in. Flight was too long, but OK. United told me I had disabled seating. When I got on the plane, the flight attendant said there was no such thing! If your airline has it, get economy plus. For an extra $180 (I think) you get a bulkhead seat. The extra leg room is key for the getting vertical-challenged.
Chinese customs is very thorough. After the search, I felt like they shoud’ve at least bought me dinner first. They confiscated my shaving gel. I’m taking it as a sign from my father to grow a beard (as well as some cerebellar cells) while I’m here.
Didn’t sleep on the plane (watched Hancock 4 times, memorized the lines) so I slept like a stone last night…or this morning, still not sure. Today, I got an exam, a physical therapy evaluation, and went with Jack (one of the interpreters, nice kid) and a fellow ataxian named Jim and his wife to go shopping.
Qingdao is nice, if a bit on the industrial side. Traffic is nuts, I thought we bought the farm more than once, but apparently, it was S.O.P.
Another point: be careful with the outlets; I plugged in an adapter and blew out the power on half the floor, way to make a 1st impression, but no one was bugged, apparently it happens a lot. And the internet is a bit iffy.
Anyway, my first stem cell treatment is Monday, the 20th, until then, PT, OT and waiting.
October 17th, 2008
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