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.

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.

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.

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.

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.

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.

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!

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.

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.