Kim's stems

2007-05-10T11:34:00.001+08:00

EPILOGUE 6

Here is the before and after video I've been working on. Before leaving for China last year, I took a bunch of video of me getting out of bed, trying to play guitar, writing, walking, etc.

Of the improvements to date, walking is the most profound. One thing I should mention: although the before and after shots were done in a single "take" both were on "good" days. I wouldn't have even attempted walking outside "before" on a bad day, which was most of the time. Although I look pretty solid, a strong wind gust would have sent me sprawling, ifn fact I broke my ankle in a fall a few days after the "after" video was shot.

Other improvements include me getting a little hairier. I'm not a hairy guy, and am balding, but my barber and my wife, Sally have both noted dark hair growing on my head and beard.
It's not my red-brown former color (I'm completely gray now), but Chinese black. Another patient at Nanshan developed a black streak in her gray hair after 8 injections.

2007-04-10T03:34:00.000+08:00

EPILOGUE 5

April now, six months since last stem cells. I continue to see stem cells at work. The cells that formed new neurons have done all the dividing and good they will do months ago, since neurons can only divide a few times. The systemic stem cells injections may still be dividing.

My numb hands keep coming and going. Feet,-nothing still. In fact, I tripped and broke my ankle last week. I've got a cast on up to my knee, and frankly, it's driving me nuts.

Up until then, I was walking pretty well, but my balance, although real good standing still, was worse when moving. It didn't take much to disrupt my walking one night and down I went. BUT---I took some video a week prior, and I also took a bunch of "before" videos in August 2006, just before my China trip. My gait became much faster, more relaxed, and straighter. It's obvious. I'll edit the video and send it to Jon at www.stemcellschina.com, so he can post it. Watch for it.

I was going to go to LA for a six-month checkup with Dr. Perlman, but that's put off now because of the ankle, Instead, I'm scheduled for a colonoscopy. Joy.

New MJD recruits in China: Nick and Maria: http://www.stemcellschina.com/blogs/Nick/
and Richard & Lily: http://richardsventure.blogspot.com/
Richard's blog is especially good, as he and his wife, although Americans, are Chinese. Lily is from Hong Kong, and speaks the language. This is a real boon, because she can be a fly on the wall, and also order out. I highly recommend it. Classic reading.

So, Nanshan has had a number of ataxians, specifically many with varying stages of MJD.

MJD, like many neurological maladies, is progressive, so any improvements with the stem cells, will eventually be masked . This is especially true with Type 1 MJD, which usually shows up in teenage years, and progresses rapidly. I, thankfully, have Type 3, which begins at about age 40, and progresses more slowly.

The new stem cells are immune to the suicidal MJD cells' tendencies, but unless you get follow-up treatments, the stem cells you get in one treatment aren't enough to "stem" the tide. That's why I intend to go back as long as I can afford to. As I see it, it's the only game in town.

2007-01-13T10:05:00.000+08:00

EPILOGUE 4

Well. three months now since the last stem cells. Balance is a little better. Hands slowly improving. Feet seem static, but better than they were. My gait is better -a narrower much more normal, longer stride, as I can balance a little longer on one foot. Might try to get out and walk around the neighborhood. It's been three years since I did that.

Shoulder is pretty well healed, after three months! Fell and wrenched a knee on Christmas Day, and that took about two weeks before I could walk or put weight on it.

Still terribly skinny, but putting on a pound a week. It'll add up.

The big news is George, (georgearruda.blogpot.com) a person on our MJD Yahoo group who's in China now with his wife Melissa. He's having six injections, and is getting out a lot more than I did. I'm jealous. As I've said, I want to try again in a year. Sally got me a Chinese language CD course for Xmas. Also Rachel from Australia with some sort of ataxia-her blog is www.stemcellschina.com/blogs/Rachel

I've got another recxruit from right here in Tucson, going over soon, she has MS.

All for now. I'll check in next month.

2006-12-13T04:06:00.000+08:00

EPILOGUE 3

Sorry for the delay. It turns out EVERYONE reads this blog. I've created a monster.

Today seems like a fairly good day. It's been two months since my last injection. I see some improvements, but they come and go. I'm seeing the return of "good days" which disappeared some years ago.

Last Tuesday, a week ago, I had a REAL good day, the first with my balance, which has been pretty bad lately. It was glorious, a real joy to get up out of my desk chair, (which I normally dread) and walk around. Unfortunately, it was gone the next day. My hands and feet come and go to various degrees throughout the day. They are victims of the MJD neuropathy (numbness.) The icy feeling in my shins and feet which was driving me crazy upon my return from China is pretty much gone, except for some nights in the toes. Both feet are much better.

My left hand feels pretty good today, and often does. Handwriting and general dexterity still sucks, but I can make some chords on my guitar now. Right hand is also better, but not as good as the left.

My bum shoulder from the China fall was determined to be a rotator cuff tear. I'm getting PT for that now.

I'm still skin and bones, but am trying very hard to put on a solid pound every week. Hopefully the Holiday season will help.

One "side" effect is my lower back pain, which was real bad after laying on my right side, is gone.

I'm hoping improvements continue into the future, with more good days. Balance seems to be worst in the morning, best in the early evening.

I hope to return to China in about a year for more treatments.

2006-11-03T00:31:00.000+08:00

EPILOGUE TWO Nov. 2

Had a crew from the local news interview me yesterday, and appeared on the local news at 10PM. Didn't go half-bad, though I looked like as zombie, non-blinking (a symptom) and talking slowly. Talked about me, Michael J. Fox, Rush Limbaugh...

Forgot to mention that the price for the stem-cell treatment in China includes a caretaker (usually a spouse, parent, nurse, etc,) Only Hal came by himself, and was there for 8 injections (2 mo.) in a wheelchair, but he's fiercely independent.

Food is up to you, which is a break from the normally depressing hospital food. Some folks bring their own hot plate and cook meals in their rooms.

Not much in the way of changes, left hand seems to be getting incrementally better. Feet and shins still cold at night. Talking IS clearer, as confirmed by my barber, and the news interview.
Doing the exercise bike, and walking & turning down the hallway.

I go in for an MRI of my shoulder tomorrow. Dr. suspects a torn rotator cuff. It's been a month since the fall in China. Jet lag is gone, finally.

2006-10-26T06:59:00.000+08:00

FIRST EPILOGUE Oct. 25
This is a summary of some of our experiences in Shenzhen and my stem cell treatments. For a complete day-by-day experience see entire blog.

EXPECTATIONS
I have had Machado-Joseph diesase symptoms for about 16 years. My CAG repeat is 72, I have late-onset MJD. I was looking for a 5-10% improvement.

CARE, COST & CONVENIENCE
Even though conditions are spartan by American standards, risk of infection appears minimal, especially in comparison to Western hospitals, where risk of infection is high. Rooms are cleaned daily. Blood pressure taken twice daily, tempeature once. MRI, EKG, and two sonograms were also included in the price. The current cost is $17K for four injections and a month's care and rehab at the hospital, $20K for five injections. I recommend five injections.

TREATMENT METHOD
The treatment evolves over time, so my treatment may not be the same as yours. The most consistent features are the injections, which are normally four, 10,000,000 umbilical (cord blood) stem cells each. Sounds like a lot, but in volume is probably a cubic mm or so, suspended in a 1 cc nutrient solution. However, these grow and multiply once in place, especially neurons, which are large. This growth can take up to three months, according to doctors, both here and abroad.

The injections are administered in two ways: Intrevenously or lumbar punch. With the blood-brain barrier, few of the stem cells reach the brain or cerebellum with the IV method, but are more effective for joint and musscle problems, eyesight, etc.; wherever blood flows. Since 90% of cord blood stem cells are hematopoeitic (pre-disposed to become blood, muscle or immune cells,) what you essentially get is high-tech blood doping. In fact I and others receiving IV injections got a perceptible "rush" that lasts for hours, making sleep improbable. IVs are given in your room, with a small IV of Nerve Growth Factor, to help coax the stem cells into neurons. A yellow fluid, NGF takes about 1/2 hour, and then you're free to move about.

Lumbar punches are more elaborate, and more effective for ataxians and brain or spinal-cord damage. The stem cells are injected into the spinal fluid. Your bed is wheeled into a clean room, where a Doctor does the lumbar punch. You curl up into a tight fetal position on your left side,the Dr. probes your #1 lumbar under a local anesthetic, finds the proper position, removes a volume of spinal fluid, and then injects an equal amount of stem cell suspension. You are also given the IV bag of NGF. You are then instructed to lie on your back for six hours, moving as little as possible to minimize spinal fluid leakage.

Any thrashing about or gross movements may cause leakage of some fliud, resulting in the dreaded spinal headache. The hard bed bothers some, but the boredom bothers all. A iPod or audio book help-s.You are instructed to fast for three hours prior, but will need to pee sometime. You want to avoid #2 for awhile. At the three or four hour mark, you can pee, (and snack) but resume the position afterwards.The spinal fluid cleanses and rejuvenates anew in three or four days.

I got three spinal and two IV injections. I could have arranged for all five to be spinals. The extra injections cost extra, but I recommend five or six. Many patients stay for 8 or more. You can also arrange sedation before the punch, which is easier on you and the Doctor, and makes it easier to lie still.

THERAPY
There is some question whether any immprovements from the procedure are the result of the stem cells, or the intense physical therapy. My answer is: Probably both; and the PT isn't that intense. The therapy is to enhance and train the new cells.

The physical therapy, or SPOT (for something (unknown) physical and occupational therapy) is individualized, but for me, consisted of morning and afternon sessions. Morning was "voice" which consists of an electrical impulse collar worn for 1/2 hour to improve swallowing & speech by passive stimulation of throat muscles. followed by 1/2 hr of acupuncture,and the 1/2 hr. of leg and arm massage. It was easy to nap through most of that. Afternoon sessions had me on the exercise bike for 15 min, walking and turning, and the rocker board for 5-10 minutes each. Not much, but I walked better every time I did it. Spinal cord & paralysis patients get maximum attention.

The acupuncture and massage have been added to the regime in the past few months. Other components may be added/subtracted in the future based upon success or failure with various ailments.

RESULTS AS OF 10/24
Dr. Susan Perlman at UCLA, an acknowedged expert neurologist specializing in MJD, examined me using a standardized MJD exam just before leaving for China and just after return, a month later. I scored higher on the return, despite severe fatigue and jet lag. Progress continues, and Dr. Perlman wants a re-exam at six months.

Would I go back? Yes. Probably in 12-18 months. There are lot of unmeasurasble intangibles: better energy, people say I talk stronger and seem more alive. I certianly have a renewed outlook and hopefulness.Most patients see some sort of improvement somewhere in 10 days or so from the first injection. For me working on emails one night, I realized I had full feeling in my feet, which had gradually gone numb 12 years ago. Unfortunatelythis disappeared afterward for the duration of my China stay, but have since sputtered back to life off and on for the last few days, more so on the left than right. This is accompaniewd by a cold feeling that can't be warmed when they go numb, again followed by a period of warm, nearly full feeling and no cold. I am hopeful this resolves soon, as it is driving me nuts. What I would dearly love is some relief from the similar neuropathy in my hands. Occasonally I fancy an improvement in my left hand (I'm left-handed), but I think it's just wishful thinking.

Walking and Balance? Lousy, but I'm still jet lagged, and have drug hangover from sleeping pills. Ask again in a week or so.

2006-10-20T07:36:00.000+08:00

DAY 32 BACK HOME Oct 19
Flight back was OK. Got to the airport (Hong Kong) late, but fortunately the flight was delayed an hour. I got wonderful wheelchair assistance from Cathay Pacific. They wheeled me through passport control, and the long trip to the gate. First on the plane.

We did everything suggested to avoid jet lag-slept, hydrated, stretched, but still arrived in LA crushingly bushed. Sally was hauling two suitcases, laptop, purse, and holding me up steady with both arms. We had to rent a minivan to get to Dr. Perlman's at UCLA for the post-stem cell exam. She had cleared her schedule just for me! She shot more video and did the same exam as she did before. I was sure I'd do much worse with the jet lag, but somehow mustered 30 minutes of strength and cogent conversation to score some more points than before. She thought my walking and steadiness were improved, eyes were better, the "buzzing"
(High-frequency tremor) in my hands was gone. Measureable improvement!

My shoulder still hurts mucho from the fall, and I'm still mighty tired. Sally's still in bed. She certainly deserves the rest. Got up this morning, and took a long shower, got dressed with every intention of coming to work, but instead of waking up, I just kept getting more and more fatigued. Finally gave in, but tried anew about 2PM, and made it in.

Well, I've put in about six bours, mostly talking to the crew about the trip, and what needs to be done at work. Back home now. I can tell, after initial wobblyness, I'm walking better, feet closer together, turning more confidently, and the 'fog' is gone again. I can stand, feet together, rock solid, seemingly forever. My legs stll get cold at night, so it turns out that's neurological. We'll see if it evolves into anything.

I'm going to blog less often now, maybe once a week. Yes, I'll return to China. I'm happy with the results, and have turned the clock back a few years, which was the goal, but I keep having this craving for noodles!

2006-10-17T07:34:00.000+08:00

DAY 31 LAST DAY Oct 17

Didn't sleep much last night, as Jon predicted, with my stem cell IV. He also predicted my shoulder pain would diminish, which it has, but I'll still have it checked out by a doctor in Tucson.

Went to lunch at a swank dimsum restaurant with Grace. Filled us up with all manner of stuffed Catonese dumplings; $10. Talked with her at length, and found out much about her, Jon, Beike Labs, China...very informative.

We leave here at about 10AM tomorrow. Most stuff is packed & ready. Sad to miss the nurses, staff, other patients and China, but glad to be getting home after a month. I'll probably be back sometime, but further north, at a new hospital in Qingdao.

Gave out our card packs. One went to Dr. Leung who said the new stem cells will continue to reproduce and mature for 3 months or so, so keep working them, and don't just sit around.

2006-10-16T09:18:00.000+08:00

DAY THIRTY Oct. 16

Still mighty sore, But one more day... Went down to 1st rehab session-acupuncture and massage, and that's it until stem cells come, supposedly this afternoon.

We're trying to pass out gifts, in the form of card packs. Gifts are a very impotant gesture here, and we don't have enough. We have resorted the cards and needed some ribbon to tie them together. Ribbon seems very hard to come by. Deb finally found some for us in Hong Kong at a small Hallmark store. She also found me some ibruprofen, but that was also difficult to find. Guess the Chinese feel no pain. Confucius said Life is Suffering. If they have a problem, they treat it with acupuncture. They also seem to prefer these hard beds, and all have strong quads from these toilets. No satellite dishes, though. Must be prohibited. That means no Al Jazzera. Pity. I guess they have to, get anti-American propaganda from somewhere else.

After being here a month, we see lots of business opportunities. I'm sure they will be addressed, and with the speed of change here, in 3-5 years the present times will seem awfully primitive.

Stem cells are here. More later.

Well, threy're still giving spinals. I got my IV, but all the nurses are helping, so I'm still tethered. Deb had her sedation, and was hallucinating. Very funny, I'm told. Sally visited her room, Deb said "Wal-Mart?" Sally chuckled and said "Sure, Deb, we'll go to Wal-Mart."

Nightime now. Turns out the IV got clotted, so they had to poke me again. Couldn't find a suitable vein, so Sally pointed out one on my thumb, which they usually avoid, because it is PAINFUL.

Feeling emboldened, we took a cab to the famous Sea World, an area of many international restaurants and shops, catering to Westerners, although I didn't see any. Sea World is near the bay, in downtown Shenzhen, which looked like Manhattan to me, except more trees. Lots of animated, colorful signs; big buildings. A 15 minute cab ride to Sea World was $3.

Now, I would never even attempt to go anywhere at night before, but I have some newfound confidence (abiility?) and did OK. Sally's been wanting a steak, so we both had a filet. Napkins and everything!

It's too bad I can't try out my walking on some of the sights. We have to leave too soon. Maybe tomorrow. We'll give out our gifts tomorrow and have the last rehab. My body's covered with bruises..from the fall, from the acupuncture, from massages, from IVs....I guess I'm just a puss.

2006-10-15T10:10:00.000+08:00

DAY TWENTY NINE Oct. 15
Shoulder sore today. This is getting old. The trick with the long pants worked. Pretty steamy outside. Some rain.

Finally got up the gumption to go for a walk in the garden, just as it started to rain. Waited in the lobby, then went outside. It was cooler and pleasant. While we waited, we did some people watching. Staring is not consdered rude here, and I've been getting plenty of stares, so turnabout....

This is a nation built on conformity, but individuality is starting to emerge. An awful lot of the women are dressed to the nines, with a lot of high heels, and bright colors. It wasn't so long ago that everyone was in khaki. Sally said she's even seen some Goths. Well, they already have the black hair! Wait till the Olympics get here in two years. Of course, if you're one in a million
there are 150 just like you here.

Another ataxia patient and her father arrived today from Jersey. Her father, a doctor has it too. Unknown type. Deb arrived back today with her husband Peter, a pilot for Cathay Pacific.
Deb thought my speech was clearer. That's six ataxians on the floor now. Well, not "on the floor", yet...

Stem cells tomorrow afternoon...

2006-10-14T12:55:00.000+08:00

DAY TWENTY EIGHT Oct 14

Workmen came in and installed an elaborate grab bar system in the bathroom, obviously custom made for these rooms. With the mats, a whole lot less dangerous. They're doing it in all the rooms. See what I did?

Tomrrow's another rest day (Sunday), and Deb returns.

Been freezing my legs and feet at night, while my torso sweats. The AC in this room freezes or heats you depending on where you sit. I'm thinking of wearing long pants and no shirt to bed tonight. It's a few degrees cooler at the foot of the bed.

We've noticed most all the cars here are late-model, and make up about 75% of traffic. No pickups or SUVs. These are all first-cars, and cost probably 1/2 million RMB. There are a lot of cabs, buses, bikes and people walking, but there must be a couple hundred thousand millionaires here. They'll probably have a good used-car market in a few years, but also worse smog and parking. I'll bet the country goes to nuclear power soon. Works for N. Korea! I hear Beijing is really smoggy, and they'll need to address that.

We're planning on going out tomorrow as long as I can hold out.

2006-10-13T18:13:00.000+08:00

DAY TWENTY SEVEN Oct. 13

Hello Muddah, hello Faddah....shoulder improving a little. Had an iffy 1st session of rehab. Got a massage first, then acupuncture. The massage got one leg into a "restless leg" mode. Not too good with needles in ya.

Second session went well. Jon was there and we talked a while. did all the exercizes, including the mini-bike. Dr. Shu told Jon I was doing pretty well until the fall.

Did exceptionally well on the parallel bar walker. My "fog" is gone today. That's a kind of a dizzyness and unclarity I usually feel, absent on "good days." Hopefully, it's a "feature" and not a "bug" as Microsoft says.

Jon is concerned that we continue to communicate after returnng home. It's in our best interest, I think for future MJD patients.

Evidently, there is a history of jet lag and illness. Not surprising. I know from experience now that continuity is important for awhile. We're reading up on how to avoid it, especially once we get to LA.

2006-10-11T22:04:00.000+08:00

DAY TWENTY SIX Oct. 12

Woke up early, feel steadier today. Still shoulder pain. Rumor has that the MIA Jon may show up soon. He is the brains behind this venture, and the floor has been in need of a good translator for weeks. Grace, the #2, has been gone too. Sunny, Camillia, and the Drs and nurses all get by, but lots of things are lost in translation or are not even attempted.

This bad wing prevents meaningful therapy. My extra injection will be Monday, and I'll get it as an IV. We leave two days later. I'll get more improvement at home. In familiar surroundings. Dr. Perlman says it should take six months to a year, though it's hard not to be jealous of Maxie, with his immediate improvements.

Deb and mom Jean left today. Deb will be back in four days. Jean's going home to Vancouver, BC.

The doctor and a bevy of nurses came in and did a neurological exam. Dr. Yang brought a camera, but didn't take any pictures.

Went down to rehab at 3. Worked hard, but maybe set my shoulder back a day or so. Pretty painful, but gotta do it. It's unlikely to heal before I get home anyway.

The four Chinese dinners shown lasted two days--about $3,50

2006-10-11T11:46:00.000+08:00

DAY TWENTY FIVE Oct. 11
Still sore and unsteady today, but stumbled down to rehab 1st session. Dr Zhang checked my shoudler, said it's just muscle pain now. Might be 10 days or so. Two more patients from Ireland arrived today with Freidreich's Ataxia, like Deb.

VERY smoggy out today. Can't see much.

Went to Voice at 2, and made my first venture into the gym in a week. Even got on the rickety miniature bike. Getting some exercize makes me less wobbly. Sally has gone to McDonald's for some MEAT.

Although I'm not doing that well, we see success all around. One of the Austrian babies, a one year old named Max, could only lie flat on his back, making little eye contact. He's a sweetie pie though, smiling when tickled. Three weeks later, he can hold his head up, is trying to talk, looking more like a normal 1 year-old. He was actually a triplet, whose twin sister is fine at home with Dad, but whose other sibling died at birth. It's good to see Maxie doing well.

2006-10-09T23:15:00.001+08:00

DAY TWENTY FOUR Oct. 10

Stem cells yesterday. Schedule mixup had me downstairs, when they had me scheduled first up to get a spinal, so instead they took Deb first. After an hour with Dr. Zhang, she was wheeled out in tears. Gabi had no problems, but spinal cord patients usually don't.

I was next. After Dr. Zhang (who kindly asked if I wanted to roll on my uninjured right side) fiddled for about 20 minutes, she sent for some sleeping medicine, which was administered thru an IV. Next thing, I was snoring loudly in my room, (movie,) back a little sore. I definitely want that again! If I was Deb, I'd insist.

Woke up early - no headache, but have the usual uncontrollable stretching.

They had 9 patients for stem cells yesterday, probably more today. They have at least 15 patients on the floor now. Deb and Jean are leaving again Thursday, back again Sunday. We will leave a week from tomorrow.

My shoulder still keeps me out of rehab. Concerning. It's getting better, but it may take a few more days. I need to teach these new cells how to behave, physically. Sally's been washing me, drying me, dressing me, feeding me and holding me when I walk (like she could arrest a fall.) I don't know if that's too good, as doing all those things by myself helps calibrate me for the day. Still, I musn't fall this last week.

Sally's out shopping with Deb and Jean, her mom, for the second time today! The first trip was to Wal-Mart, now at Lo Wu mall. I feel real unsteady, so I don't dare leave the room. Hope she buys some movies. Meantime, I listen to my iPod, and blog wth one hand.

Everyone's telling me to keep my head up, but it's hard for an ex-artist to get out of a funk. I need a sign, or I'll cut my ear off LOL.

Already thinking about the workload when we get back. It will be Christmastime ordering, Jack Schmitt booksigning, cooler weather, understandable TV, movies, college basketball, jet lag...I'm proud of our crew for handling everything for this long. Good work gang!

2006-10-09T13:10:00.000+08:00

DAY TWENTY THREE Oct. 9

Nurse Irene came into take blood pressure this morning. I was shirtless, and she saw I now have a large bruise from my left collarbone to my xiphoid process (Nathan knows where that is) It looks pretty alarming. She sent Dr. Zhang, who administred my stem cells last week, in for a look. Now that someone knows and understands, I'll leave it in their hands. The bruise may be the result of my sleeping on my wounded side last night. For practice, and because I'm real tired of sleeping on my back. Makes me snore.

One thing we haven't seen are 'Nurse Rachets' at this hospital. My last visit to the Northwest Hospital and shop of horrors produced many characters: the night nurse, who took my polite refusal for a breathing treatment at 3am as a personal affront, refused me further treatments (I was a pneumonia patient.) Good for me they only work three days a week. I was on a 'spectrum' of antibiotics to try and knock out this stubborn pneumonia. One nurse saw to it I was administered the most caustic antibiotic through my hand IV at midnight, for a week, on a slow drip. Burned like Hell for two hours. Forget about sleep or sympathy but, something finally worked. After they cut my chest open to scrape my lungs, the intensive care nurse thought I was such a baby that she put the call button out of reach, drew the curtains and closed the door on my cries for help. Another nurse took out my pain control epidural, but didn't tell anyone. Two hours later....well I could go on and on. I'm sure many readers have had similar tales. American hospitals...you can keep them.

This is really a piece of cake by comparison. The nurses are all young, and pretty for the most part. They'll listen to you but don't usually understand; which is better than if they understand but don't care.

Well, stem cells in an hour or so. More tomorrow.

2006-10-08T14:37:00.000+08:00

DAY TWENTY TWO Oct. 8
Deb and her mom Jean are back. Good to see them. My iPod is back also. They did come in and installed a green rubber bath mat wall to wall, and grab bars are coming. Nurse Irene, who is the best English speaker, explained that Chinese wear flip-flops in the shower, which seems awfully smart, now that I think about it. The bathroom floor is some kind of lightly textured,
absorbent stone tiles, but the walls are slick marble. Not good for an ataxic.
Well, stem cells tomorrow. Shoulder still hurting about the same. Couldn't make anyone understand, so I just have to grin and bear the pain. I just hope I don't whimper like a baby.

Our mushroom pizza just arrived from Papa John's. mmmm.

2006-10-07T13:16:00.000+08:00

DAY TWENTY ONE Oct. 7
Tough night. Stomach, back, and neck muscles were all pulled in the fall, and spasming. Skipped morning rehab, but will try to make afternoon. I need some activity.

Got a nice note from niece Breanna, with pix. Glad to hear brother Mark is running. At our age, health is the most important thing, and if you're able to get into shape, go for it! And yes, Jim the DVDs have a 'live' laugh track.

Very hard to type or eat with the wrong hand. Forgive my brevity.

Well, skipped afternoon also. Just not up to it. Sally and I did go down to the garden, which we have been looking at from high above. It's very nice and there was a cool breeeze blowing. We'll post some pix.

I may go for the next stem cells (monday) as an IV unless this shouder radically improves tomorrow. Very few stem cells make it to the brain in that case, but it is more systemic, and I won't have to lie on my back for six hours. It should heal up in time for a final spinal, next Monday.

2006-10-06T13:38:00.000+08:00

DAY TWENTY Oct. 6

Sure enough, I felt like I was hit by a bus this morning. The xrays came back inconclusive. One Dr. saw a small fracture in my collarbone, the other didn't. Minor either way. I hope it heals enough by Monday, when I have to curl up into a tight ball for another injection.

Sally's making a trip to McDonald's for lunch. New patients include Katherine from SF, who brought son Lucas, a Hungarian woman making her third trip, and another Romanian family.

Deb and her Mom (and my iPod) will return Sunday.

I have to admit, these two days without rehab are completely boring, allowing some homesickness to creep in, along with some depression. I feel the pressure of a lot of people hoping I do well. I've got ten more days here to try. I guess having my feet back is pretty major, and I should be thankful. My thighs were cold this morning so maybe in a few days balance will improve.

Sally won't let me take a shower by myself anymore, after the fall, so she made me sit on the toilet, while she washed me down, like a pet. Pretty humiliating, but I musn't fall anymore. At least at home the bathroom is equipped with plenty of grab bars. And I use 'em. The Drs. prescribed some more myserious medicine in capsule form, and it appears to be helping. They also jabbered about the bathroom-shower, so I expect some grab bars will appear soon; hopefully before I leave. They constantly upgrade these rooms.

The DVD "movies" here are all pirated--badly. Some guy sits in the back of the theatre, with a camcorder. The result is a dark picture, lousy sound, skips and dropouts, and silhouettes moving across the screen. A lot of people walked out on Ultraviolet. I don't blame them. We'd buy first quality, if we knew where to look. The remotes are all in inscrutable Chinese. Nevertheless, it's all there is. so we keep watching them.

2006-10-05T13:14:00.000+08:00

DAY NINETEEN Oct. 5
Well, looks like today will be a lost day. Was ready to take a shower and head down to rehab, but they came in with the IV. An hour later, I was late again for rehab, so I took a quick shower but fell as I was drying off. Hit hard, could have been a disaster! Wrenched my shoulder so Sally is typing this. Dr Liang checked me out. But I'm pretty useless for rehab today. That's the third fall I've taken here. I'm trying to be careful. Was a lot more stable today. Still am, actually. Feeling more stable is a double-edged sword, though. You make moves (like turning too fast) that are reserved for non-ataxics, and you lose your balance. Your body remembers too easily how things used to be.

Signed up for a fifth injection, two days before we leave. Which is less than two weeks now. Booked the airline ticket to Tucson, and made an appointment with Dr. Perlman at UCLA, between arrival at LAX and departure for home.

LATER, It's about 8 PM and the children have gone to bed. The ward has quickly transformed today, with colored interlocking rubber mats on the floors and toy cars and scooters. Two children from E. Europe arrived today. Two more tomorrow.

My collarbone has swelled up, and bruises are starting to appear. I was sent to X-Ray for a picture of my shoulder. I don't need this. I dread trying to sleep tonight, and more dread waking up tomorrow. But I feel pretty good otherwise!

2006-10-04T07:59:00.000+08:00

DAY EIGHTEEN Oct. 4

Woke up a 6AM, due to too much rest yesterday. No headache, back a little sore. Feet are warm, nearly 100%. Calves and shins warm too. I could never tell if they were involved, due to the neuropathy in my hands, also. But I may feel Dr. Shu's needles today.

Back from rehab. Dr. Shu was ready and quickly adminstered painlessly. Feel somewhat woozy. Fell once in my room, injuring Sally more than I. Maybe I missed the four days of rehab. Maybe it's the start of another physical revelation. Maybe I just need a nap. Back to rehab again at 3PM.

Jon, if you're reading this, how come you don't see any eggrolls here? I also signed on for a fifth injection.

Medical differences here, alcohol isn't used, instead large swabs with an iodine solution are used for all disinfecting needs. The only trouble is it stains clothing. My underwear had what appeared to be a giant skid mark, but it was an iodine stain from the spinal. I hope it doesn't alarm the laundry man. Also with daily IVs, you'd think they'd leave a shunt in, but they poke me fresh daily. Nurses are so skilled they use the same hand painlessly, though. Acupuncture needles are inserted by hand, instead of tapped in through a tube. They are becoming morel conscious of the need for absolute sterility, hence my trip to a 'clean room' for the lumbar punch yesterday.

Two Austrian ladies are here together with their small children. I asked if they have to be sedated before the spinal. One said yes, but 2 year old son Benjamin is hard to keep still afterwards for six hours. I can imagine. 7 year old Mattia from Italy has a hard time in acupucture, looking like a pin cushion. It's these kids who are the brave ones.

Kathy wrote and said there was blue skies in Hong Kong which is only 45 minutes away. Hard to believe. She's back at home in St. Louis, nursing a sick husband and father-in-law, getting over her major jet lag.

I wondered how the stem cell procedures move forward before I came, but reading the blogs from earlier, it is apparent. They used to make you lie for only four hours, now six. There used to be two IV injections. Now only one, and the rest are spinal. Chinese herbs used to be served as a disgusting tea, now mixed in a daily IV. That is only what's apparent. There are probably other unseen procedures. 5000 year-old societies must do something right, except the pig's knuckles.

However, the stem cell treatment seems to be basically the same for all patients here. They differ in different techiques (someties surgical) at different hospitals in China, affiliated with various biotech companies, using different sorts of stem cells, derived from various sources (mine are cord blood - legal in the USA, but regulatory hurdles preclude human trials) They've been doing them here since 2001. Hal told me they're working on using placental stem cells, which are even more potent. I intend to return, if the money holds out. I expect progress on both our parts, even if it's meager. I'll be going to Qingdao up north, as Nanshan will become a children's ward by then.

Battery's running low. Till tomorrow.

2006-10-03T12:14:00.000+08:00

DAY SEVENTEEN Oct. 3

Stem cell day. Around 2 PM. With any luck I'll finish the blog entry later tonight.

Feet seem to come and go. They are better during the day. They are very ticklish at night, like a buzzing. The texture of my socks bother me, but I'm bothered more when they are off. Still have about 75% improvement.

Can't eat or drink anything for 3 hours before spinal. Then will have to wait for at least 4 to 6 hours after to get up. It makes it simpler deciding where to eat!

Emails are OK now. Our Novaspace server was down for awhile. Sally's Hotmail account isn't affected. The official Holiday is the anniversary of the union, but locally, it's just the annual mid-autumn festival. It lasts a week, but most get only three days off.

Starting to cool off a little. Rained briefly the other day.

The nurse came in about 3 and told me they're ready.

LATER... The did the first injection in my room, but this time took me to my bed in another room. Much smoother this time. Only took 15 minutes. the only pain was the anesthetic and some new nurses tring (in vein, LOL) to give me an IV. Then they wheeled my bed and me back to my room, for the six hours on my back. "Listened" to a few movies, and then ate. Dr Yang, head of Neurology and the Lady Dr. (who gave me the injection) came in and saw to it I was OK, after the first few minutes. He asked about my feet (said he had been reading my blog), which at that point felt like blocks of ice, but still warm to the touch. Dr. Yang said to find him if I had any more concerns, and told me to get some sleep. The icy feet fortunately quit after a couple hours, along with an attack of restless legs. Maybe it was the Mirapex I took, maybe the stem cells, maybe both. I was glad it was gone, whatever. Moved around more than last time, but no ill effects, after six hours.

I see Dr. Shu again tomorrow.

2006-10-02T13:16:00.000+08:00

DAY SIXTEEN Oct 2

It was too good to be true about my feet. They went dead again last night. Woke up some this morning. Maybe it was the pizza. They do feel better now, but it's hard to keep them feeling warm, even though they're warm to the touch.

Went down to voice today after my IV. At voice, Sunny came in and invited us to lunch at the Xin Tao hotel, where Kathy stayed. Very classy, but everything was Chinese. We took a long time orderimg, through Camillia, as Sally won't eat the meat or fish. Ordered, and then Camilia left. No Sunny either. The staff took pity on us trying to eat in vain with chopsticks, and brought out silverware.

Two things that have baffled us: No one uses napkins (which they never have anyway), and they don't add up the bill, which was in Chinese. The waitress got the manager who spoke English, and it still took awhile to get the total. We can't make anyone understand. Jon, you are missed here. Maybe you're supposed to carry your own napkins like you do your own toilet paper.

Stem cells tomorrow afternoon. Hope it goes easier than the last time. At least I know what to expect. Your body gets used to it, also, I hear. Thinking about getting a fifth injection. We'll be here long enough. It's an extra $2K.

The doctor came in and inquired about my feet. I wasn't sure what to say. She explained that the Chinese medicine IV was saline mixed with a nerve grower Which accounts for the yellowish color. Saline is clear. I get that IV every morning.

We're enjoying our vacation from work, too. They seem to be handling everything at Novaspace OK. We were worried.

The plan is to turn this into a children's ward, sand send the adults to Qingdao,, up north, where Jon lives. That's happening, as the common room is filled with toys, and children's laughter (and crying.)

Late at night now. Still can't get my email. I think our server is down again at home. My feet
are driving me bananas, and I can't breathe. I miss the light, dry air of home.

2006-10-01T11:58:00.000+08:00

DAY FIFTEEN Oct. I
Well, it's official. After a 12-year absence, my feet are back. At least 75%. More at night, it seems.

Finally got some sleep last night. Sally says I'm going out with her today, later. Hal left this morning, but shoved a picture of himself under our door. Hal is a photograper, and bought a nice Nikon and a photo printer here. He's coming back in January.

Went food shopping at Wal-Mart. Took a cab. Ridiculously busy, because of the Holiday. The shopping carts are tiny, and they steer on all four wheels, making it a good exercize to keep it under control. Never saw another caucasian. There is an escalator of sorts to the second floor (groceries.) Actually, it's an inclined moving walkway. The carts have this gravity stopper on all the wheels, so they can be taken on the escalator. Lots of strange foods. About $23 for a week's worth of groceries.

We saw a few old textile factories on the way, but mostly 30 and 40 story highrse apartments. There are literally thousands, with cranes atop new ones everywhere.

Woke up this morning to a big Red Chinese pimple on my nose. Very attractive. That's what I get for overeating at Papa John's and McDonald's...but I need protein! MEAT...animal flesh. Rice and noodles are OK once in a while.

Kathy just arrived home in St. Louis with some bad jet lag. 17 time zones away. Despite the fact that China takes up 6 time zones, they observe the same time everywhere here.

Went out again to the DVD' "store" which is actually some guy selling DVDs out of a cart for less than a buck each.

Sunny came in today and said I'd been missing the doctor's rounds because I'm downstairs at physio every day (as I am scheduled) The nurses want to give me the Chinese medicine I.V. at this time, also. Seems somebody needs to get scheduling straight. I'm just following what has been told me. They get kind of impatient with laggards downstairs. I don't want to anger Dr.Shu, with a handful of acupuncture needles. He could literally pin me to the table! Actually I prefer him to his assistants, as I rarely even feel his needles. Sunny told me to go down at 11 instead of 9AM. Hopefully they'll get the word downstairs.

Sally tried to wake up one of the nurses from a nap. Turns out she is two months pregnant, and not feeling so good.

Till tomorrow...

2006-09-30T14:04:00.000+08:00

DAY FOURTEEN Sept. 30

The hospital staff is on an abbreviated schedule this week, and the city is emptying out for the big holiday.

Had another lousy night last night. Freezing cold shins and feet that wouldn't warm up, while upper torso sweating profusely... bizzarre. I'm supposed to explain this to the Drs., but haven't seen them in over a week. I don't know what I'd say anyway.

Every day I get the mysterious "Chinese nerve medicine" in an IV for an hour or so (picture). It says it's just a saline drip on the package, but I'm hoping something else is mixed in.

Ate lunch at McDonald's. Jillian has invited us to an upper-crust Chinese restaurant for dinner, but my wardrobe is pretty sparse. I'm still not walking well, and chop sticks with my clumsiness are out of the question: I'd starve. Or poke my eye out.

Hal leaves tomorrow morning, and when David leaves Monday, that will leave us as the only English-speakers in the ward. It will be lonely in China for us. We've watched about every DVD available in here. Deb returns next Sunday, with my iPod, which Kathy inadvertantly took to HK with her.

No Physical Therapy/acupuncture for four days, because of the Holiday. I think I'll boycott the miniature bike anyway from now on. I might just make up my own routine. No one will notice.

Another stem cell injection is scheduled around Tuesday. It's says spinal on the schedule, but I guess I'll take it whatever. I'm clearly outnumbered here.

2006-09-29T14:12:00.000+08:00

DAY THIRTEEN Sept. 29

Had a fitful night last night. Hot/cold/sweaty/achy. Usually these hot/cold flashes are nerves regrowing. It seems to be common throughout the ward. My long-deadened toes are warming up, and had to take off my socks, because it was driving me nuts. I just hope I regain some dexterity and feeling in my fingers also. If I could play my guitar again, I'd say this was definitely worth it.

Got up and walked around the ward at 5AM, to work out some of my aches, but the night nurse chased me back to the room. Rooms are emptying out with a new crop of patients coming next week. They repaint and work on the rooms between patients.

Next week is the National Holiday, and they have strung lights across the streets like Christmas. Sally's out shopping again, this time with Norma, David's (spinal cord) nurse.

Well, Sally's back, with some goodies. Turns out Norma's quite the bargainer, which is handy here. Took a hellacious cab ride back. Seems cabbies in every large city like to show of their bravado to the tourists. They give you a nasty look if you try to use a seat belt.

Hal described the traffic here as a ballet. Streets are wide and impeccably groomed and maintained, but they're used for thousands of buses, cabs, private autos (always metallic colors or black, ) bicycles, or hand-pulled carts. Everyone seems to go the same speed, lots of honking. but no road rage or impatience - just to let you know you're seen. Lane changes aren't signalled, just done; frequenty. Pedestrians DON'T have the right of way, but will stop traffic if they have to. Haven't heard any accidents, or squeaking tires, although that does happen. 'Stale' green traffic lights blink a few times before turning red. What a great idea! The buses seem to be color-coded, and there are lots of ladies strolling with equally colorful parasols.

No rain here in the two weeks since we arrived. Very unusual, but just like home.

2006-09-28T13:05:00.000+08:00

DAY TWELVE Sept. 28
Not feeling so good today. Worked too hard yesterday and my bones ache. That exersize bike was made for much smaller people. Kathy will be leaving in a few hours. I'm glad she came along to give Sally some company.

A new Parknson's patient arrived today.

It is a national holiday next week, so some of the staff will be gone. I'm scheduled for more stem cells Wednesday, but they haven't been right yet. Our host Jon, who's an American, is nowhere to be seen. Says he's actually in the States, for another few weeks, so we'll miss him altogether. Communication is therefore spotty, and It took some talking to get out of part of Physical therapy. One person promised me a massage for my sore back, but managed to get some heat pads anyway. Dr. Zaid, who left today, suggested my blood pressure might be too low, causing fatigue and worse balance than normal. He said to tell the nurses to take a standing blood pressure, and then a prone one five minutes later. Impossible to get across. Zaid was walking much better, BTW. I guess I just go with the flow, just like an American hospital.

2006-09-27T13:01:00.000+08:00

DAY ELEVEN Sept 27

Woke up early today, with a very slight headache. Hurts when I cough. I keep stretching- I must be an inch taller by now. Deb and Zaid are supposed to get theirs today. Deb is pretty nervous after what I went through.

The internet here is seroiusly congested during the day. 30 Mil bloggers here. I can usually get my email, though, but sometimes can't read my own blog.

Things that are hard to get here- paper goods, like napkins and paper towels. Forks, any clothing not petite or small sizes, cereal, shower curtains.

Electricity is OK. 220V/50HZ like most of the world. The outlets are universal - combinations of a lot of plug patterns. Most modern electronics have no trouble with 220. Cell phones, computers.. but your hair dryer will fry and die.

1 1/2 billion people here, but 10% are Christian. Most are Bhuddist. This isn't your Father's Communism. Enrepreneurship is encouraged, religion isn't persecuted, people own property.
Civil servants are still surly. It's just a one-party system, like Republicans, only more benevolent and progressive. They provide and subsidize basic needs, but tend to stay in the background. (That'll put me under surveillance.) I think they'll be in for a major economic downturn and environmental problems, but it may be awhile.

Everything is smaller here, like Europe. Everyone seems to have a cell phone. Popular ringtones are traditional Christmas carols! KFC is a little spicier, like Cajun, but the pizza is like home. Portions of Western food are tiny, while rice or noodle dishes are huge. Plenty of fruits. Bananas are popular.

Still, there are disgusting habits, like spitting (which will get you a stiff fine in Hong Kong, but not Shenzhen.) Sally saw a mother expressing unused milk from her breast in plain sight; toddlers doing their business through slit pants on the sidewalk. No bad smells, though. They keep the streets and gardens spotless.

We haven't seen any cats, and only a few dogs. Maybe because they'll run out the windows of some high-rise. Maybe they're mystery meat. Not many wristwatches (but they'll try to sell you a knock-off Rolex) Maybe they get the time from their ubiquitous phones.

The girls are out shopping, due to their truncated trip becaue of my injection yesterday. Kathy, Jennifer and Deb are all leaving tomorrow, so Sally will have to go it alone for awhile. Deb's going to Vietnam for some orphanage, but will be back in a week or so.

Don't worry, Kerry, I'm OK. Drinking lots and peeing all the time. I'm improving, but I think so far it's the physical therapy.

While I was on the rocker board in physio today, Dr. Shu snuck up behind me and tried in vain to trip me up. Rocking from side to side is really easy for me for some reason. "Good" he said, and patted me on the back.

Deb and Zaid have had their injections with no problems. Both are leaving tomorrow afternoon with Kathy by ferry to Hong Kong.

2006-09-26T21:39:00.000+08:00

DAY TEN Sept.26
Guess where the girls are?
That's right. I do my thing, they do theirs... Really, I'm glad they're here. Kathy leaves Thursday, and so does Deb, who's going to Vietnam until Sunday, for some orphanage.

FLASH! stem cells today- a day early. It's 9PM now. What an ordeal. Evidently I'm some sort of alien, and they took a painful hour trying to locate my lumbar #1. I was within a minute of being hauled downstairs to surgery. I would've been the first. I'm still a little woozy, but the blog must go on.

I had to lie on my back, flat for six hours, to "marinate the meat." Evdiently the girls knew ahead of time, but chose not to tell me. I wish they had, as I wouldn't have drank so much water. Had to pee something awful right away, but had to hold it. That was miserable. Glad it's over though, and no trace of a headache, which I was convinced I would get.

Before all this, I was going to say I felt pretty good today. Fell asleep in acupuncture and woke up to a laughing Dr. Shu. I must've been snoring. The bike was easier and I went for an extra five minutes. Walking better, though I have to concentrate, and surprise stops and changing directions is still difficult. I believe I'm getting more feeling in my toes.

Gabi from Romania arrived for his second visit today. He was paralyzed from a fall from the neck down, was here in Feb. got good results; feeling from the neck down, trunk control, can stand with assistance. He's back for six more injections. He speaks English very well.

The Spanish Doctor (Zaid, who turns out to be Palestinian) and his family are leaving Thurs. also. He was practicing writing the other day (a Doctor practicing penmanship?). He has ataxia, like me, and is walking much more steadily, though he won't say so. He seemed to be satisfied with his writing, though.

2006-09-25T14:13:00.000+08:00

DAY NINE Sept 25
Some pix:
Xin Tao hotel buffet
Wal-Mart
Chinese crouch toilet (common)
Luohu shopping mall
Nanshan hospital
(click to enlarge)

In answer to some questions, yes, we're (tring) to learn some Chinese, with some help from interpreters. And yes, they stare (it is not considered rude). Yes I tower over most of them...actually ALL of them. The further you get from the hospital and hotel, where there aree westerners, the more foreign you become.
The hospital is not as high-tech as USA, but more hands on. They do check on you at night but don't wake you up to give you a sleeping pill. We found out all of the patients order out for food. Lots of eateries around here. On the first floor is a couple grocery stores, and a coffee shop that provides room service.

English is taught in all the schools. And the girls constantly hear "well, hello there" or "hey missy!", and most of thre nurses (at least on this floor) speak pretty good English, or can easily find someone who does. Even the Iranians (they prerfer Persians), Romanians and Hungarians speak English. Some of the details or nuances are hard to convey, though.

2006-09-24T16:22:00.001+08:00

DAY EIGHT Sept. 24
Sunday, here. Day of rest. I need it. Just been staring out the window, and laying down, reading emails, and now writing. Sally, Kathy, Deb and her mom have gone to some mall somewhere. I expect them all to be gone a few hours. Deb will wear out after awhile (I think).

I remember being in the hospital at Northwest with pneumonia and thoracic surgery a few years ago...I became very homesick, just wanted to get better and go home. Tubes, wires, and a catheter hanging out of me...mean nurses, awful food...very depressing. On the other hand, this is much more comfortable (so far). I am kind of dreading the first spinal which is rough for most. Supposed to be Wednesday, but can be late or early.

It's really clear smog-wise today. Cool and dry with a good breeze. We can see the bay in the distance. China's government subsidizes coal for power production, so a lot of the smog is coal. Not enough cars to make a difference, though it may be a problem soon. It rains frequently, being tropical here, so when it does, it washes out the brown air onto the buildings. The older ther building, the browner. They're probably impeccable inside, but the older 7 & 8 story apartments look pretty run-down. A newer apartment on a 30-story highrise might cost $400 US a month. These look similar to buildings in NYC, with th's httom floors rented out as retail spaces. Speaking of rain, we have had none so far which is unusual.

For dinner, the three of us ate at Kathy's hotel, across from the hospital. It's my first time outside, and a difficult trek for me. Both girls were holding my arms, and I'm hobbling down the promenade like a stroke victim. I think I've had another "episode." I wake up one day and I'm much worse in some area than the day before. A bunch of brain cells commit pre-programmed suicide all at once. I don't remember having such a hard time at LAX last week, and covered a lot more ground. Anyway, it's got me feeling kind of down. I'm supposed to be getting better. A lot of people are pulling for me.

The hotel is pretty fancy. We ate the buffet, which is pretty extensive. I had something that could have been yak testicles, but was presented nicely and was delicious. I'm still burping the smell.

Sally needs to get on and tell you some of her adventures the past few days

Well, it's back to the grind for week two tomorrow.
Sally here. Kathy and I have ventured out every day. We are picking up a few words, are learning how to count. We went for massages last night with Deb and her mom, Jean. That was a hoot. These young men gave us back and foot massages. Deb knows just enough Chinese to get in trouble. With the help of her phrase book, she kept the dialog going. We laughed so hard, so did the boys (men? they looked very young). Everyone loved their massage, but I'm a tenderfoot, and today I have bruises! It only cost about $3.00 US for an hour and half. I don't know if I would go back soon. My feet need to recover.

Kathy and I always have an adventure when out shopping. We have managed to get our point across, but it takes time. Today we went to Lu Wo (spelling?). It's a huge 6 story shopping mall. The stores are just small stalls, and you have to bargain for everything. We weren't sure how much money to bring, but quickly ran out. So, we will be going back before Thursday, when Kathy has to leave.

2006-09-23T13:31:00.000+08:00

DAY SEVEN Sept 23

Sunny and drier today. The girls are out exploring again. They're finding a lot of intereting places. Hopefully, I'll get improvement enough to go outside the hospital in a few weeks. There are only about three rooms on this floor that are empty, so word is getting out around the world.

Finally took a half of a vicodin last night. I was all over the place like a tasmanian devil. The vicodin stops my twitchy shoulders, so I can sleep. Tomorrow's a day off, which I need. Sally says I've been more wobbly than usual this week. I re-took the chunk out of my knee today on the exersize bike. My legs are too long, and I hit the adjustment knob if I'm not watching.

My therapy guru is Dr. Shu, a very charismatic man about 30. He does my acupuncture, and instructs me on physio. He speaks no English, but is extremely cool. Today after he pulled out the needles and handed me my shoes, I said 'ni hao.' He looked at me and said 'ni hao?' which means hello. He then proceeded to laugh, and said something in Chinese to the effect I was being ridiculous. I said ' I meant shay-shay' (thank you.) I found out he is a favorite of other patients, also.

The girls and Deb went out for massage this evening. It sounded like quite an adventure. I'll let Sally say more in a future blog. Cousin Kathy leaves in a week. Deb will be a worthy replacement.

It seems the view from the 14th floor doesn't show all the nitty-gritty of thre actual surrondings. All the trees on the wide-tile sidewalks hide the beggars, homeless and vendors. Getting across the street is an exersize in bravado. I'll let Sally say more.

2006-09-22T12:18:00.000+08:00

DAY SIX Sept.22
Sunnier today, though still hazy. Shenzhen's population has been revised upward to 12 million, and has been named one of the top three places to live in China. Criteria included traffic, leisure time, employment, an housijg. It seems to be a young people's town.

They hustled me downstairs this morning for a thourough cardiac sonogram. I guess they don't want the old man collapsing in physical therapy. I was about ready to yesterday. I had a bad day; was pretty tired, back hurt, and couldn't sleep.

The girls are out shopping again. I'm sure glad Kathy came along, so Sally could do something besides watching me mope around. They know their way around the area pretty good. But haven't gone in for the famous pedicure or massage yet.

My next stem cells are scheduled for Monday, but that can change. This on'e's spinal; a lot more effective, but a little scarier. Hal says they numb you first, then withdraw some spinal fluid, and then inject the cells with nerve growth factor. They have to inject an equal volume or you get an imbalance which causes bad headaches. I'm prone to headaches, anyway.

I met Deborah, the lady with Frederich's ataxia. Very attractive, lives in Hong Kong, married to an airline pilot. She is very inspiring, because she doesn't seem to let her condition slow her down, which I've certainly done. She's supposed to get an injection today.

The nurses came in in their little cadre, spotted my bag of prescription drugs and started chattering. "What for?" they asked. I explained; embarassed. I really hope to get off some of this stuff before I leave, especially the Vicodin, which helps me sleep, but also exacerbates the ataxia. I've been taking two to three of them daily for about three years; not like some people who take twenty, but I'm sure by now I've got a withdrawal problem, as evidenced by the sleep problems I've had here. I'm down to half a day, or none at all, but it's tough to lay still in acupuncture, for example.

On another subject, we haven't seen any fat Chinese people here. This is a huge country without a weight problem, despite eating a lot of carbs (rice.) The women and men are downright trim.
I'm hoping my stem cell donors have the famous Asian acrobatic balance. I sure need it.

2006-09-21T14:28:00.000+08:00

DAY FIVE Sept. 21

Sunny came by yesterday, and insisted on adding an air mattress to my bed to make it softer. I couldn't make her understand not to bother. I sleep on the floor at home. The hard bed is fine with me. The air mattress was also roly-poly and hard to get on, and alarmed the nurses, who thought I might fall off at night. We took it off.

Finally got a visit from Dr. Yang, the head neuologist this morning. He gave me a pretty thourogh exam, but I'm so worn out from over-doing it in physical therapy, I can hardly stand today. I looked pathetic. Had my throat, acupuncture, and massage therapy, but have to go back to physio in a half hour. Yuck.

Brought my iPod to acupuncture, and got many admiring looks. It's nice to hear familiar tunes.

I chopped a chuink out of my knee yesterday on the stationary bike. It was no big thing, but everyone insisted on taking care of it to avoid infection. It seem so nice that all the staff takes such good care of you and looks out for you. I get blood pressure and temp checked 3x a day. Only temp is taken in the armpit, with a thermometer.

A nice lady from Canada came in today , with her thirty something daughter with Frederich's ataxia, SCA 1. We showed her around. A couple of families from Iran are here. Shahab, from Pakistan, left with his two kids yesterday. Mauricio and his wife are here from Italy with their son. This whole ward is a lot international families, desparately seeking hope for their loved ones.

Pretty hot and humid today, also, but each room has individual A/C contols, so we keep it pretty nice in there. Watched movies last night, but these pirated DVDs are low quality, and the remote is in Chinese. All of the English subtitles make no sense at all.

Many people are wearing dust masks today, the air outside smells of chemicals. Shen Zhen is an industrial city, so maybe there was some sort of spill.

At night, couldn't relax, so I went out on the smoking balcony and admired the scenery. Cool breeze. This city goes on forever, with these high-rises. Lots of activity, traffic, nightlifr.

2006-09-20T08:24:00.000+08:00

DAY FOUR Sept. 20
Hot and humid today, but Camillia has taken the girls shopping anyway. I had kind of a rough night, arms and legs twitching akimbo; heart racing. Didn't sleep too well. Feel better today, though I had a hard workout in the gym. There's a couple of folks here from Nat'l Geo, doing a story. They interviewed Hal, now they're checking out David. David's massive power wheelchair broke down in front of my next machine, so they sent me home.

The Nar'l Geo people visited Beike (pronounced ba-KAA) the biotech company producing these stem cells, and were blown away by high-tech methods and know-how on their part. This is just a floor in a hospital; they are the brains. This program is bringing some major bucks to this hospital, though.

The girls returned from shopping with 3 pairs of shoes and a shirt, $10. That's about the same as a couple double cheeseburgers, fries and a small coke at Mc Donald's here.

2006-09-19T11:49:00.000+08:00

DAY THREE Sept 19
Busy day. Went down to throat (speech and swallowing) therapy at 9. It is a TENS unit with a elastic collar, essentially. 30 mins of that. Then 30 mins of acupuncture, which was more tolerable today, then massage for 1/2 hr. Then into the physical therapy gym for a workout on balance machines.

Then had some Chinese pizza for lunch, like sweet and sour calzone. Had a Coke to drink. Tastes exactly like it should, in the familiar can colors, in Chinese, and with the old style removable tab-top that I haven't seen in years.

Dr.Liang says stem cells at 4 or 5 PM today. Hal the paraplegic weeled into my room excitedly and said he had a breakthrough, grabbed my cane (or baston as he called it, ) got out of his wheelchair and hobbled across the room. He said he had been shopping when he got a hot flash, and his legs started buzzing. Something had reconnected.

Fast foward....It's now 6PM. I got stem cells, but It was through IV, and not spinal. I guess there was a miscommunication. We heard a lot of kids crying on the floor, when they usually sedate them to administer spinally, so I guess the whole floor was IV this week. Hal says you want as many spinals as possible-he bought a couple extra. The spinals have much better neural effectiveness, on account of the blood-brain barrier which only allows a small percentage of IV stem cells enter the neural system. On the other hand, the ones that DO get through can go deeper, and a blood IV can fix other things that ail you, like bad eyesight (see DAVID'S blog: http://www.stemcellschina.com/blogs/David. He was in Physical Therapy with me today, complete with a cheering section. He's quite a guy.

Camillia (her English moniker) who schedules us, is quite a talker. She's only 23, Kelsey's age, and speaks pretty good English. Says she wants to go shopping with Sally and Kathy. She'll make sure they get a good deal. She said Shen Zhen is essentially 20 years old. 10 million people have settled here since then. Yow.

There's a phyisician from Spain here, being treated for ataxia. we had a long talk last night. It's funny to see him, because he's almost exactly as far along with the disease as me. He's skeptical, but his wife, who's also a Dr., sees changes. He said he had to give up his practice because he could no longer write! Been there. He had been to a big hospital in Miami that didn't know what ataxia was, but it would cost $30,000 for a five day "treatment." His wife said screw that, and here they are.

2006-09-18T08:07:00.000+08:00

DAY TWO - Sept. 18
Woke up about 6 AM. Nurses came in shortly thereafter and took blood and my temperature. Supposed to get an MRI today, a sonogram, and start physical therapy. First stem cells may come Wed.
Forgot to mention that I saw Dr. Perlman, the MJD spaecialist, at UCLA while in LA before we left. She spent two hours with me, and was enormously optimistic and helpful. She follows all the China blogs. She thinks that the intense physical therapy here could account for some of the improvements, and that the stem cells should benefit in the longer run. She gave me a thorough exam, and videotaped me. She wants to see me again when I return and again at 6 mos. and a then year. We should get some hard quantitative data.
I fell for the first time in months this morning, trying to get out of a rolling chair on this hard floor. Broke the chair, but I'm fine. I tried very hard to remain uninjured before this visit, as I didn't want to miss it.
Sure enough, I had my MRI and sonogram today. The hospital is a zoo, with lots of folks waiting for tests. This place is huge, and the comparitively quiet stem cell floor is an anomaly. I think I'm the only one with a moustache in the whole city.
I also started a regimen of acupuncture, throat therapy and massage. Of course I liked massage, but I have problems with acupuncture. I can't sit still for an hour with needles stuck in me.
Stem cells start tomorrow afternoon! The first one will be spinal. Not too excited. They delivered my MRI, and my cerebellum has certainly shrunk since the last MRI in 1996. Not unexpected...
I am not supposed to eat or drink anything after Noon tomorrow, and the stem cells should arrive after 3. I've got to lie flat for six hours after injection. Fun. Depending on how I feel, I may skip tomorrow's blog, or have Sally do it.

2006-09-18T07:41:00.000+08:00

DAY ONE
Got into Hong Kong at 5 AM. Our plane was a half hour early and we couldn't find the person that was supposed to be waiting for us. So, we just sat down and waited. We finally found him, and were on our way to the hospital. He didn't speak any English, but was very efficient and got us out of Hong Kong with no trouble.
We got to the hospital just after 7AM and had to wait a half hour or so to check in. Sunny checked us in, while Jillian explained to us what would happen that day. My cousin Kathy is with us, so Jillian took Sally and Kathy across the street to get Kathy checked in to a hotel. The hotel is very nice. She then took them to the bank to convert money. We kind of hung around in the common room for a while, met a few of the other patients, then went down to the restaurant in the hospital lobby for lunch. The music was playing American pop sung by others, for instance, there was a lot of Eagles tune, but not sung by the Eagles. The menu had items listed in Chinese and English, so it was pretty easy to order. We did not order the Roasted German Pig Knuckles! We had club sandwiches, and Kathy had fried rice (huge portion), but couldn't get any sweet and sour sauce.
We ate and then came back to the commmon room. It is a room with computers, microwave, fridge, tv, with lost of books, magazine, and DVD's to watch. There are several Americans here, and families from Pakistan Germany and Italy. We met Hal first, he is from the south. He's been here almost 2 months and has had great improvement. He has a spinal cord injury. He keeps telling us we are in for a great surprise. He is very optimistic. He looks much younger than his 47 years.
We were pretty tired and smelly, but managed to stay up till about 10PM. Slept pretty good, but the beds are very hard. Sleep number 100. That's fine for me, but Sally likes a much softer mattress. She may be spending some nights in Kathy's room.

2006-09-14T04:23:00.000+08:00

Thanks to hundreds of emails of good wishes. I'm choked up! Two days until we leave now, and I'm starting to get a little nervous; not about Chna yet, although I'm sure that will come, but the 14-hour plane ride. I can't sit still for too long, and I choke on water at least once a day, (it sounds and looks worse than it is), and I need to pee a couple times a hour. I'll bet the other passengers will wish to sit next to a crying baby rather than have me on their flight!

2006-09-08T04:12:00.000+08:00

One week to go until we leave for China. I've been busy videotping examples of my problems, for a before and after video. I expect only a 10-15% improvement, although some folks with similar diseasess have reported a 10-year regression in symptoms.

Some background: I am a male, 54 years old, from Tucson, AZ USA. I was diagnosed in 1998, although I have had real problems with balance and equallibrium since about 1990. I was uncoordinated so much as a child, my Mom made me take ballet lessons at age 7! I am a former artist and musician, but had to give up painting in 1995, and the guitar, bass, banjo & mandolin about a year ago. I really don't miss the art, which still is my profession (See: Novaspace)
But I really do miss the music, which I did profesionally many years ago.

I have SCA-3 (spino-cerebellar ataxia type 3) also known as Machado-Joseph Disease, or MJD.
It affects balance, as mentioned, and motor functions, along with a host of other neurological symptoms, like swallowing problems, cramps, numbness in extremities, tremors, slurred speech, etc. It is eventually fatal.

They have located the offending gene (SCA3 is hereditary), and are close to a cure, but even a cure wouldn't regress damage done. With the stem cells, I hope to buy some time and some relief from the symptoms.

Specifically, I hope to regain enough balance to function, and regain some feeling in my hands and feet. Swallowing and speech improvements would be nice also.

I'll have four injections in four weeks. Two through spinal fluid, two through IV. I am guaranteed 10 million stem cells per injection. The stem cells are umbilical, from donated cord blood, (which is actually legal in the USA, under the present Presidential morality.)

The treatment cost only $13K , since I made the reservation in April. Prices increased in May, but are still far less than the procedure would cost here, if they were even close to clinical therapy. They have been doing stem cell treatments in China for five years, mostly on Chinese citizens, but in recent years, people of many nationalities have come for help.