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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.
November 6th, 2008
For the second night in a row, I got very little sleep, about 5 1/2 hours, and this time it hit me right between the eyes. I was staggering around today as if I had had no improvement at all. It’s amazing how much sleep, or lack thereof, affects ataxia. Tonight, I will get my beauty rest. Jason took one look at me in PT and tried to send me “home”. No way. I sweated it out. I didn’t do whatI I usually can, but I still busted my butt. I’m convinced that the harder you work in therapy, the better it is for the stems.
Jason felt so sorry for me that he sent his associate to my room for acupuncture and electrowave. I don’t know if it was the od.of voltage yesterday, or my belief that the more I take, the better, but today I noticed the skin on my legs where the pads go is peeling, like a bad sunburn. Maybe I ought to take it easy on that.
Jack took me to the computer store after that, and sure enough, they couldn’t fix it. But a new keyboard bypassed the problem. He said I paid too much and tried to talk the salesguy down. No deal. But the price was 40 RMB, about $6. When I told him it would cost 5 times that in the States, he was stunned. He told me that they even bargain with cabbies. I can just see trying that in NYC. My new keyboard seems to be supplying different fonts, but I don’t care. I get to write on my computer when I want, and not wait for the kids to stop playing games on the ones in the common room..
Tomorrow, my Canadian friends, Rena, Richard, Dawn and little Jacob are leaving, and I’m happy for them, but I’ll miss them. And Clint and his son Luke leave Friday. But I’ve made new friends, Dani and her beautiful daughter, Jessica, from New Zealand by way of Australia; and Debbie, her mom, and her beauiful daughter, Kitty, from London by way of South Africa. And Jim and his wife are still here, as well as Cindy and her son, Xavier, who calls me Uncle Mike, from Florida and my pretty Sophia and her folks from Venezuela by way of Canada.
Yesterday, I found out from Jon Hakim that Beike’s Bone Marrow Transplant Dr. is coming here Monday, and he’s excellent at spinals. Today, I e-mailed him and asked if I could have my 3 remaining treatments next week, with that Doctor. I know that that would be a little close together, but I hope they can do it.
Election day “today” at home,and Obama won! Great news for the USA.
Only 10 days to go, boy do I miss my wife and kids.
November 5th, 2008
Didn’t sleep very well last night. Made for a very long day. That and a few things going kablooey. I am writing tonight on one of the hospital computers, because I spilled diet coke on my keyboard. It didn’t seem to do too much damage, but writing this without using “b” or “n” would be somewhat of a challenge. Since I don’t know where to get it fixed (the place I went to to fix the DVD didn’t) I’ll have to buy a keyboard. Hopefully I can find one in English, since writing this in Chinese would also be somewhat of a challenge.
Then my Palm Pilot (yeah, I know they don’t call them that anymore) froze. I was able to do a restart, but now I have a blank Palm Pilot, which I can’t synch, since that’s the other thing wrong with my computer. It’s not like I have that much of a schedule here, but now I can’t play any of the games.
Then I had a meeting with the doctors, who told me that I must have misunderstood about the short needle, and that they would try to do a spinal, but there were no guarantees.
Finally, one thing did go right, I think. I met Jonathan Hakim, COO of Beike, who was very responsive to my misgivings, and said that they DID use short needles here. He also said that he would look in to the situation, and try to rectify it. I certainly hope he does.
Other then that, PT went poorly due to my lack of sleep, and I almost got electrocuted when they set the electrowave machine on well done.
I think all of these things bothered me more than they should have because I really have had enough, and I’m ready to go home. But I still should have stayed in bed. It’s 1:30, thats where I’m heading now.
November 5th, 2008
I ran today.
Not far, not a sprint but not a jog. And Jason was holding my hand. And I fell and bruised the hell out of my elbow.
But for the first time in over 2 years, I ran.
Such a milestone merits a tally of changes. My balance is improved, my ability to recover from a misstep exists again. I don’t have to look at my feet to walk. My voice is stronger, my speech improved. I can walk heel to toe in a straight line. And for the first time in two years, I don’t feel overwhelming fatigue and dizziness. Not too shabby for 3 treatments.
I found out why the doctors were reluctant to do more spinals. They’re worried about severely damaging a disc. Last time they got lucky(!). This time, if they don’t get it on the first few tries, they’re going to an IV. They did another set of X-Rays this morning, and a third set this afternoon. I’m a little worried about that. This morning, there was a fly buzzing around in the X-Ray room. After the third of four X-Rays, it dropped dead. Seriously, I’m kind of glad I’ve already had my kids. When they do an X-Ray in the states, they go into the next room, and it lasts about a second. Here, they go in the next room, close a bank vault door, and it lasts a minute. And the lights dim like Louie is getting the chair in the big house. Guess I won’t need a night light when I go home.
Just got back from injection. I’m ticked off. They did double my valium. so I slept through what was an aborted attempt at a spinal. They opted for an IV, instead. They used the “back is too muscular” line again. Said they’d try with a longer needle next time. Well why didn’t they try this time? Don’t they have it? Do they have to order in?
Apparently, I haven’t made myself clear. I will, in no uncertain terms. I want what I paid for. I see the doctors tomorrow morning, and there’s going to be a rude awakening. I have 3 treatments left, and I want them ALL to be spinals.
November 3rd, 2008
Sunday, day off. I decided to sleep in. About 8:15, there’s a knock on the door. I responded with something intelligent, like, “Mngl?”. The door opened and the cleaning lady walked in. I tried to indicate “could you please come back later?”, and she proceeded to spend the next 15 minutes cleaning the room! Smiled at me, talking in Chinese, and I was lying there in my skivvies under the covers. Exactly what is the proper etiquette in that situation? Strange country. Then again. this is a hospital.
Later, Dr. Bing came by, I think he’s the senior Dr., a really nice guy who speaks more English than the rest. I keep thinking of him as Der. Bingle. He asked me to be ready early the next morning for an X-Ray of my spine. In light of my previous experience, I was all for anything that would help with the next spinal, so I told him I’d be ready. Then I mentioned my ambivalence about having only one more spinal. He readily agreed that an additional spinal would be better. I don’t know why he had the sudden change of heart, but I’m glad we got that settled. I may ask for another.
2 weeks to go, and I’m getting very antsy to leave. I know it’ll go fast, but not fast enough. I’m ready now, thank you. I guess a little improvement has gone to my head.
Aside from the important stuff, like my wife and kids, it’s the little things, like TV, driving, American food. I could go on and on. I don’t know how the expatriates do it.
Went out to dinner with my friends from Canada next door (literally and figuratively) Rena, her son Richard, his wife, and their son, Jake, Clint and his 15 month old son from Missouri, and Debbie, her mother and daughter from Capetown, South Africa. We went to a “hot pot” restaurant. You get a pot of hot broth, and you cook your meat and vegetables in it. It was fantastic, and only $15 per person. How to live in China for just $25 a day.
I haven’t talked much about the weather here. I was told it was like Chicago. Only if Chicago was moved to Georgia. It’s in the 50′s at night, 70′s during the day, basically perfect. Too bad I don’t get out more.
November 2nd, 2008
Very strange day. At physical therapy, I’m doing bridges with Jason sitting on me, when he rolls off and wants to arm wrestle me, two hands to one. Like I said, he only weighs one-fifty, so it wasn’t hard. Later at acupuncture, he has Frank, another therapist, ready to go at it.
I’m starting to feel like I’m back in college, only then, I won drinking money doing it. Oh well, at least the kids were amused.
I pushed myself in that therapy session about as hard as I can. Rising from a sitting position holding a rod with 20 pounds on it, with my feet together (not as easy as it sounds). Holding a squat with that 20 pounds for almost a minute. Of course, remembering that I used to squat 30 times that kind of puts it in perspective. I know I shouldn’t compare what I could do with what I can do, but sometimes it isn’t easy. I used to walk 4-5 miles a day in the course of my work. Fast. That used to be my way of relaxing, of thinking things through. Now, the idea of walking across a mall is daunting. I miss that. But this way lies madness. What I can do is take care of my kids, hopefully earn a living, and enjoy life.
Anyway, back to therapy. The harder I push in there, the more bang for my buck I’ll get from those stem cells. So I push. When I think of some of those other programs I could have gone to, with no therapy, five days and your done, and only as far away as Mexico, well, I’m glad I’m doing it this way. I’m just worried that I’m not getting enough spinals; the doctors say it’s enough, but cells introduced into the body through IV don’t pass the blood-brain barrier, and my problem is in the cerebellum, in the brain. I think I’m going to request two more spinals instead of one, even though one was a real pain in the…back.
November 2nd, 2008
Woke up to the patient relations staff parading through the hall, in full costume. And they’re taking pictures of me, laughing hysterically.
Change in plans. Thought I had a spinal today, apparently I misunderstood. Therapies were already postponed, so with the day off, I went into town for lunch, gifts, and groceries. Got 2 cards with the names and addresses (in Chinese) of the mall and the hospital. Had lunch at KFC (first ice in a drink since I’ve been here).
China does NOT have a disabilities act, what they do have is a people with patience and kindness, in a matter of fact sort of way, for their fellow man. Before I could ascend the three steps to the KFC, a man took my elbow and helped me up, and walked away with a smile. I’ve only learned three words in Chinese, hello, thank you, and you’re welcome. I use the second one a lot.
After lunch, I looked at gifts for my family and the hospital staff. One of the moms, Joanne (here for the THIRD time from Singapore with her family for her son with undiagnosed developmental delays) helped me get something for the nurses (I won’t say what, they might be reading!) but I’ve still got a long list. Then I went to the RT Mart for groceries. Got my diet coke and other assorted sundries, loaded them in my backpack, and caught a cab “home”. All in all, I was rather pleased with my little adventure.
After a quick rest and some housekeeping, I went with Cindy, her son Xavier, Diane, Kris and her daughter Brooke, for a farewell dinner with them at the Holiday Inn (a four star hotel here). The three Michigan ladies are heading home tomorrow, after 40 days at Camp Stemcell. They’ve been good friends, and I’ll miss them.
We met a charming maitre d’, a Geman fellow named Michael, who came to this country, got a job, and married a local girl (we also met her, she works at the hotel).
Came back, exhausted, and talked to my wife, my mother and sister. Think I’ll call it a night.
November 1st, 2008
To my wonderful wife; happy birthday and I’m sorry I’m missing it for the first time in the best 17 years of my life. I’m the luckiest man alive. I love you, and I miss you and the kids more than I can begin to express. All I can say is only 17 days until I see you. After all, this is a family blog.
Another day of physical therapy, needles in my body, and voltage in my legs (this wasn’t in the spa brochure). But there was a variation to the theme. Amanda, one of our terrific interpreters, was kind enough to set up a day for us with a reflexologist. Now I’ve gotten a lot of massages in my time, I used to go once a week in my Broadway days, and I’ve always said, the harder the better. Until now. I feel like a beached jellyfish. Total invertebrate. The spinal tomorrow should be a cinch, as there’ll be no resistance whatsoever. For someone so slender, this guy was incredibly strong.
PT was more of the same, with new twists every day. Today, I was on my back with my legs crossed, arching my back, playing catch with Jason (hurry, hurry, come see the dancing bear!). Did Godzilla through Tokyo with ankle weights. I’ve been on my back, lifting my butt, and balancing on my shoulders and feet. I started this with 20 lbs. on my stomach, then with Jason (all 150 lbs. of him) trying to push me down. Now he’s sitting on me, and I’m still pushing him up. I may be uncoordinated, but I’m still strong.
After PT, I hit the steps with the ankle weights. I slipped and hit the big step, cutting my shin. In acupuncture later, Jason notices this, and without warning, puts a swab soaked in alchohol on it. I let out a yell that scared everybody in the room.
Called my mother-in-law today, my father-in-law passed away just before I left (Great week for my wife, fly to Florida for 4 days for her dad’s funeral, then hurry back to pack up your husband for China) she was tickled pink to hear from me half way around the world. Skype is great.
October 30th, 2008
Another exciting day in Qingdao. Had PT this morning, topped it off with some extra stair work. Then my second IV in the afternoon, almost fell asleep in the chair. When we got to the IV room it was chained from the outside, and there were nurses inside trying to get out! I kept looking for Moe and Curly, but they didn’t show.
IV was interesting, one of the moms was there with her boy, and she is in health care. She pointed out to me that there was a large bubble in my line, headed for my vein. As this is not good, she tapped it out for me.
My sister and her family, my family and my mother often get together on Friday nights. We usually order pizza or Chinese. Well, someone’s going to have to start cooking. Had dumplings for lunch AGAIN and I’ll probably have pizza for dinner AGAIN, only this time no corn, thank you LA Pizza. Will I be getting paid for product placements? Guess not. Screen Actor’s Guild doesn’t have jurisdiction in China. In my previous life I was a classical singer and commercial voiceover actor, you know, one of those guys who tells you to buy stuff you don’t need. Even if (when!) this works, don’t think I’ll be going back to that. It’s all about talking fast, and I was good at that, but it’s not currently one of my strong suits. The irony of this is not lost on me. But one never knows, do one?
Getting that seventh IV treatment is not going to force me to change my escape plans, um… flights. Now I just have to find out what it’ll cost. Wonder how much they’re going to stick me for?
October 29th, 2008
Pretty much the same as yesterday. Therapy and more therapy. Found out I will be getting that seventh injection and only one more spinal! I told the doctors I would do whatever was necessary, but this is the way they want to go. The doctors examined me again today and said I’m making excellent progress. IV tomorrow, spinal Friday, and 3 more IVs after that. I’ve been doing PT once a week for a year and a half (all that insurance allows) but when I get back, I’m going to step it up to three times a week for the next three months. It’s very important to give the stems their marching orders early on.
We’re losing another couple and a mom and grandson from Nebraska tomorrow, drinks and appetizers tonight. A mom and her daughter(early 20′s) from New Zealand arrived yesterday. This girl was 21 years old when she died of a heart attack. They brought her back and she died three more times in the ambulance. Oxygen deprivation.
So people come and go, and one problem is more horrifying than the last. Makes you realize that your problems aren’t so bad. A lot of people are telling me how brave I am for coming here alone. I’m not brave. I’m just doing what I have to do. The brave ones are the 5 year olds with Cerebral Palsy and Optic Nerve Hypoplasia and autism and oxygen deprivation from drowning that are here, smiling despite their challenges. And their parents. That’s bravery. I’m not religious, but I thank God that my problem is not genetic. I don’t know if I could face that.
October 28th, 2008
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