Viva Las Vegas

Merry Christmas everyone! We were in Las Vegas last week shopping for holiday gifts, taking in a show and doing some ground work for the Annual Membership Meeting of the National Ataxia Foundation. The event will be held at the Flamingo Hotel in Las Vegas from March 28th to March 30th, 2008. We wanted to see how accessible Las Vegas is, and in particular, we were interested in the facilities and configuration of the ADA hotel rooms.

In general, Las Vegas is probably one of the most accessible cities that we've ever visited. We've never seen more folks on wheelchairs and scooters, and they all seem to be having a great time. At the airport and cab stands, it seemed like every 4th or 5th taxi has the handicap accessible sign on the side of the cab. All big hotels have a fleet of scooters by the bell desk ready. Renting the scooter merely requires signing it out with the bellman. All of the public restrooms that we've used are handicap accessible as were the bathrooms and showers in most hotel spas. The elevated walkways at major intersections on the strip have elevators large enough for both wheelchairs and scooters. The monorail and trams are also accessible with space to accommodate even scooters. We were very impressed.

OK, enough PR for Vegas. Here's what we don't like about Vegas:

1. Can the casinos switch to a low pile carpet in the public areas? It was very tiring to get around the carpeted areas in a manual wheelchair. We (Andrea and I) pushed Richard around, and it tires us out after a while. Can you imagine Richard pushing himself around? Even though we don't gamble, in order to get to the room elevators, you have to snake your way around the entire casino floor. The layout of the casino can be very unfriendly for folks in wheelchairs because the hotel deliberately put slot machines in odd angles so that you have to squeeze around chairs to get from point A to point B.

2. Cigarette (second hand) smoke and an apparent dearth of ashtrays. Need I say more?

3. Why do hotels place their handicap accessible rooms in the most undesirable areas of the building? OK, I understand that the room must be close to the elevator, but does it have to face the freeway, the noisy delivery dock or the electric transformer that emits a bone-vibrating hum 24/7? I dare you to find a handicap hotel room in Vegas that has a view of the Strip! I was told that the only rooms of this kind exist at the Wynn Hotel. If only it didn't cost an arm and a leg ......

For those who are interested in attending the NAF Annual Meeting, you'll be please to know that the Flamingo has ADA rooms available at the rate of $124 per room per night. These go quickly, so be sure to make your reservation soon.

Role Model

Stem cells, experimental drugs and other curative treatments aside, here's the inspirational story of Charlie Wedemeyer and his fight against ALS.

Life isn't measured by the number of breaths you take

One of the biggest obstacles in raising funds and awareness for Ataxia is the fact that the number of people afflicted with the disease is minuscule compared with say, cancer or diabetes. Similarly, drug makers would rather direct their attention to researching cures for cardiovascular diseases than orphan ailments like SCA3. I recently came across an article in the Wall Street Journal that talked about one man's attempt in turning the tide on funding and finding the cure for ALS.

Speaking about spreading awareness of rare diseases, on an episode of House on TV a few weeks ago, a doctor confessed that she might have inherited Huntington's Disease from her mother. She refused to be genetically tested because "not knowing her fate encourages her to live life fuller." Although I do not agree with this character's reasoning, I do applaud her for wanting to live her life to the fullest despite her potential handicap.

On the home front, Richard is keeping up with exercising, eating right and taking various medicines and nutritional supplements prescribed and recommended to him. Lately, he has found a local physical therapist who has experience working with patients who has neurological ailments. In fact, the PT's father has MS so he is intimately familiar with this class of disease. Richard described his weekly 40-minute PT sessions as "brutally intense". Perhaps PT in this case means "physical terrorist"!

Through the MJD discussion group came news of a new nutritional supplement regime that has shown promise in improving ataxia symptoms. A few members on the MJD discussion group, including Richard, have volunteered to be the guinea pigs who will then keep tabs of their experiences and results of the supplement and report back to the group. Richard's initial efforts were hampered by the fact that we ordered the wrong type of Vitamin B. This has been corrected and he will start taking the correct Vitamin B and PhosChol starting next week. Also, we learned that in order to get the optimal results, the supplements cannot be taken in conjunction with any anti-depressants or any drug that affects the CNS (Central Nervous System). Wish us luck!

The Accidental Blogger

We are honored to be asked recently by Prof. Christopher Scott of Stanford University to write a guest post on his blog, The Stem Cell. We had a difficult time writing the post because we've always felt rather uncomfortable when asked to give our advice on whether or not to go to China for stem cell treatment. On one hand, we don't want to appear standoffish by refusing to take a position but on the other hand, it is rather presumptuous of us to think that we're even qualified to lend our opinion on such sensitive and personal issues as someone's health and well-being.

News from Down Under

We were alerted to an article in 6minutes.com titled "Hard sell on Chinese stem cell cures" that commented on my post about ethics.

Visit to Southland

We've just returned from visiting Los Angeles and Irvine this past week. Coincidentally, it is USC's Trojan Parents' Weekend so we got to spend some time with Andrea.

It has been six months since we've returned from China and time to see Dr. Perlman at UCLA for another evaluation. We have been told by Beike that we should be seeing some improvement (if any) by six months, if not before. On this visit, Richard lost a few points on his SARA score compared to his May 2007 exam. His speech, hand-eye coordination and foot-shin test were a little worse. However, Dr. Perlman remarked that Richard looked very alert and healthy. His energy level and stamina remain good. Furthermore, Dr. Perlman shared with us news that there are at least two exciting medical trials for Ataxians that will be upcoming in 2008. It is therefore important for SCA-ers to get registered with the Cooperative Ataxia Registry in order to become part of the database of patients. We are eagerly waiting for further news in the coming year.

While at Dr. Perlman's waiting room, we saw Mike and Jody from the Northern California Ataxia Support Group. Like us, they were taking advantage of the fact that ACARM is in Irvine this year to piggyback their medical visit with the conference. Speaking of ACARM (All California Ataxia Research Meeting ) 2007, the topics were germane and informative and the speakers lucid and knowledgeable. The audience was smaller than expected but those who came were very dedicated. There were quite a few who had traveled far. One person came all the way from the UK. Two of the non-Californian attendees were Kim and Sally Poor from Arizona. We have never met the Poors although we were familiar with Kim's blog and his experience in China which helped convince us to give stem cell therapy a try. It was good to finally meet them in person.

Of Mice and Men

Since this is Sunday, I'll take a break from speechifying and let this YouTube video do the talking. I bet the audience would not be laughing if they were watching three people on the spinning rod instead of three mice. Here's another one about this type of experiment.

On another note, I found out as I was looking for additional YouTube videos about SCA that there is an experimental rock group called Ataxia. If a punk rock group can call themselves the Dead Kennedys, I guess anything is up of grabs.

International Ataxia Awareness Day

Next Tuesday, September 25, 2007, is International Ataxia Awareness Day. The purpose is to create awareness of this relatively rare disease. I am getting a head start in doing my part by posting to this blog in the hopes that you will click here to learn more about Ataxia and how you can help in this effort.

Please consider making a donation to the National Ataxia Foundation by clicking here. Your gift will help Richard and others suffering from this terrible disease through funding the research needed to find the cure. Thank you for your support.

In terms of Richard's progress, there's not much change. He has recently started to work at home with a personal trainer once a week on additional exercises to strengthen his muscles. Despite Richard's diligence in working out at home, at the Y and at his weekly Pilates sessions, he has found that his muscles are getting weaker. Moreover, his sleep has been poor lately due to night terrors. He'll probably ask Dr. Perlman if there's medication for the night disturbances.

An evening with Dr. Andrew Fire

We're back from Vancouver. It is good to be home. Having traveled quite a bit in the last three weeks, we've become more aware of how airports and airlines differ in accommodating people with special needs. Hong Kong, Burbank and San Jose airports are amongst those that are the friendliest with the best wheelchair attendants. Southwest Airlines deserve special mention for going the extra mile for disabled passengers. We've flown with Southwest more times than we can count and each time, they have been unfailingly helpful, courteous and unobtrusive, on top of that they also offer $49 fares to LA.

In contrast, at both JFK and Vancouver, our wheelchair attendants were no-shows while at SFO, we had to push Richard up a very steep ramp and then waited from another 20 minutes for the wheelchair attendant to appear. While generally it is possible to push Richard around most airports through security checks, departure gates and baggage claim, there are airports, JFK being the most notorious, where in order to get to the elevators to go down to baggage claim and transportation, one needs to go behind and into restricted areas. This is where the wheelchair attendant becomes vital since he/she has the proper i.d. or key to operate the elevator. Enough of my ranting ....

Richard and I recently heard Dr. Andrew Fire speak on his research on RNAi. Dr. Fire, together with Dr. Craig Mello, received the 2006 Nobel Prize for Physiology or Medicine for the discovery of RNA interference (RNAi). RNAi is a means to "silence" the messenger RNA (mRNA) from giving instructions to make a certain protein. In the case of Polyglutamine Diseases, (including Huntington's, SCAs 1, 2, 3, 6, 7 & 16) RNAi therapy can potentially be used to stop the mutant gene from being expressed. As promising as this breakthrough discovery is, Dr. Fire cautioned that it would take many years before RNAi therapy can become a practical reality. He said that the human physiology is much more complex than that of the C. elegens, a nematode worm, which was his research subject in the RNAi experiment.

You can find the link to his Nobel lecture of RNAi here. Although we probably understood less than half of the highly technical material that Dr. Fire presented, his passion and enthusiasm for the subject matter is easy to see.

Persona non grata

It's official --- the pointer to our blog has been removed from the stemcellschina.com website. Thanks to our friend Nick who brought this to our attention.

An apology

I want to apologize to the ex-Nanshan patients to whom I've e-mailed requesting their opinion on the last post concerning ethics. In hindsight, I was most insensitive and inconsiderate in putting them in an awkward and no-win situation by asking them to either support my view or Mr. Hakim's. Mea maxima culpa.

A question of ethics

I had an interesting discussion with Jon Hakim, director of the foreign patient services department at Beike Biotech today about ethics. On several occasions, Jon e-mailed us with requests that we did not comply with because we deemed them unethical and improper. Jon, on the other hand, thinks that these requests were reasonable. So to settle this debate, we agree to poll this audience or, more specifically, the folks who have received treatment in Nanshan. I will forward the contents of this post via e-mail to the Nanshan patients whose email addresses I have. I welcome the opinions of the readers of this post as well.

Point 1: Is it ethical for Jon to ask Richard to post the actual medical report of his visit with Dr. Perlman this past May when Richard was given the SARA (Scale for the Assessment and Rating of Ataxia) which quantified his progress after the stem cell treatment? Jon made this request after he read our May 9 post about the results of the test. We had never given Jon any indication that we would be open to sharing Richard's medical records and reports publicly nor did we ask for his input on our visit with Dr. Perlman. We received his e-mail on May 16, which reads:

I was wondering if you could post the medical reports that you have gotten from Dr. Perlman on your web site? It would add some credibility to it, I believe. Thank you.

We responded by saying that we would not because the information is private. We have already stated in our blog that there was measurable improvement. Why do we, the patients, need to lend "credibility" to the clinical assessment? Who is going to challenge our word? The purpose of our blog is to keep our friends and relatives abreast of Richard's progress. We are not in the business of proving or disproving that the treatment works nor are we hawking Beike's stem cell treatment.

Jon countered that various patients, including Kim Poor, have expressed their desire to post their medical records publicly to substantiate the effectiveness of the treatment. Since we have posted Richard's numerical SARA score in our post, Jon assumed that it was OK for him to ask us to post the actual medical report.

My problem with Jon's request not only stems from his casual treatment of such personal information but that the request came from Beike and not the Nanshan doctors. Isn't there a conflict of interest here? What would possibly justify the need for the representative of the company that sells the treatment to ask for medical data directly from the patient? Isn't this the domain of the doctors at Nanshan? In the US, medical institutions must follow specific guidelines to ensure the confidentiality of patients' medical records (HIPAA). Not only that, but there is strict protocol about who should and should not contact the patient in clinical trials so as to safeguard the impartiality of the data and experiment.

Point 2: When we returned from China, we were scheduled to see Dr. Perlman for a post-treatment consultation on May 7. As we mentioned in our May 1 post, Richard had sprained his foot in late April. We received an e-mail from Jon on May 4, asking us to consider postponing our visit with Dr. Perlman for another week because, in Jon's exact words, he wanted the doctor to see Richard on "an up day instead of a down day."

Since we live in the San Francisco Bay Area, and Dr. Perlman is at UCLA in Southern California, a last minute change in plans (2 days notice and on a weekend) translates into time and money lost in rescheduling flights and lodging. Moreover, the lead time to get an appointment to see the doctor is easily 2 to 3 months. Those who have traveled with a disabled companion understand the complicated logistics involved in not only packing for special needs but also arranging for other specific accommodations and reservations necessary to make such travel happen. A request that would disrupt such carefully laid plans should not come lightly and without good cause.

Would delaying Richard's visit a week have a significant effect on the accuracy of the SARA score? I don't know. I do know that Dr. Perlman emphasized before our China trip that it was very important for her to examine Richard as soon as we returned in order to measure his progress. Our May 7th visit was almost a month after we had left Nanshan. Kim Poor wrote in his blog that he saw Dr. Perlman as soon as he deplaned in Los Angeles from China.

Would Jon have cause to ask Kim to postpone his visit if he had known that Kim was going to see Dr. Perlman after a long and tiring plane ride? How would jet lag impact Kim's performance during Dr. Perlman's examination? If Jon had made this request to him, would Kim have complied? Are these questions even relevant since a physician is trained to take into consideration how factors like travel, a sustained ankle sprain or fatigue might affect the performance of the patient?

One thing on which Jon and I agreed is that his e-mail telling us that he would rather us not mention about the recent Wall Street Journal article here on our blog is ethically questionable. His e-mail further said that "the WSJ is evil, especially that reporter." In another e-mail, Mr. Hakim commented that "this journalist in general is well known to spin his stories anti China as much as possible and I had firsthand experience." Not only did I mention the article in the blog but I also wrote this. I believe in presenting both sides of the story and letting the reader decide.

I cannot shake the feeling that Big Brother is watching. Is Jon using our blog to monitor us? I'd like to believe that he is interested in Richard's health as a friend and not as a salesperson of stem cell treatment. However, some of his requests can be construed as too self-serving.

Simply put, we believe that our medical records are private and should only be shared on a "need to know" basis with people who are empowered and qualified to tend to our welfare. Beike should not make unsolicited suggestions and requests to the patients in matters pertaining to the patient's medical decision-making process such as the disclosure of medical reports and physician visits.

What do you think? We'd like to hear your perspective.

Everything you've always wanted to know about stem cells

Richard and I spoke to our stem cell class at Stanford this past Monday. Each week, Professor Scott asks for student volunteers to make short (10 minute) presentations on any topic pertaining to the subject of stem cells. We spoke about our experience in China, and the response from the class was tremendous - our 20 minute presentation ran over an hour. Afterwards, Professor Scott wrote about it in his blog here.

For those who want to learn more about stem cells and the latest technological advances in this area, there are free podcasts of each week's class on iTunes. Go to iTunes, click on iTunesU, then choose Stanford University, click on "Straight Talk About Stem Cells." If you have trouble accessing iTunes, Professor Scott's book, Stem Cell Now, is a great source in understanding the basics of stem cells. We read this book in the class.

Afterward our representation, many people thanked us, but we really should be thanking them for letting us share our experience and for their insightful, perceptive questions. Some of our classmates work in the medical field while others are teachers, engineers and researchers. Most have a good understanding of stem cells. Here is a sample of some of the Q&As:

Q. Did the Chinese doctors follow up with Richard after he was released from Nanshan Hospital?

A. No. We were given a discharge report with no specific instructions on how or when to follow up. We were, however, told that we could contact the hospital staff should we have any questions or concerns.

It is standard medical protocol in the U.S. for doctors to follow-up on the patient's progress after the patient is discharged from the hospital. This typically involves medical prescriptions, instructions on follow-up care and a check-up appointment with the doctor. So far we have not been contacted by the Nanshan doctors, but we have received a group email from a U.S.-based Beike representative asking Richard about his progress.

Q. How did we hear about stem cell therapy at Nanshan? What studies or reports did we read that convinced us in going to China?

A. We heard about Nanshan from fellow MJDers' experiences. There were no formal medical studies or reports published or provided by Beike about the Nanshan stem cell patients that we were aware of. We researched Beike's website, sent an inquiry to Beike and corresponded with their staff. We accept the fact that we had no guarantee that the treatment was going to work.

I distinctively remember cringing as I listened to my answer to this question. Did we sound desperate and naïve? There is so little that is published about Chinese clinical results that prospective patients mostly rely on anecdotal evidence from stem cell blogs like this one and others at stemcellschina.com. In the package of materials provided by Beike to prospective patients, there was a list of publications by Dr. Yang Bo of Nanshan Hospital, but none of these papers are easily accessible (outside of China). My suspicion is that even if they were available, the text would be in Chinese.

Q. (Directed to Prof. Scott) Were there any representatives from China at the Annual Meeting of the International Society of Stem Cell Research in Cairns, Australia last month?

A. No. The organizers have hoped that by holding the meeting in Australia that it would encourage more participants from Asian countries. Japan was well-represented.

There was some speculation from the class as to why China did not participate. One classmate who is ethnic Chinese suggested the language barrier might be a factor. Perhaps Chinese researchers and doctors are not fluent in English and thus not confident in presenting their work in English. Perhaps, she also hypothesized, their non-attendance can be attributed to the traditional Chinese belief that one should not toot one's horn for fear of being called immodest. I subscribe to the former argument.

I can understand why there is so much skepticism about stem therapy in China. The burden of proof as to whether or not the treatment works has shifted to the patients and not the Chinese doctors or researchers. Patients write about their experience and progress through blogs that are used as anecdotal testimonials. The patients then cite reports of medical visits with doctors in their home countries to further support that there is measurable improvement. In contrast, Chinese doctors seem disinterested in documenting and following up on their patients. This curious lack of interest and initiative on China's part may lead the West to believe that China has something to hide. If the treatment works, then why not show the world solid empirical data instead of relying on soft anecdotal support? Patients can talk themselves blue in the face about how they think the treatment worked for them; unless the Chinese are willing to subject the trials to peer review, however, the treatment will never gain any legitimacy in the West.

Someone in class asked us if we had any regrets about going to China. We told her that we had no regrets whatsoever because we entered into this venture without any expectations of a miracle cure. I still believe that stem cells are the future of medicine. There has been much finger-pointing about how the West is determined to short-change China's efforts. As an ethnic Chinese, I want China to succeed in becoming a premier provider of stem cell therapy. But it is not going to get there without self-advocacy and opening itself to Western scrutiny. There needs to be more effort in the documentation, disclosure and discussion of its clinical experiments. If China wants its accomplishments to be recognized in the West, she must abide by the same protocol and regulations of the Western scientific community, particularly peer review. I can only hope that discussion on blogs like these and in other forums will help facilitate greater cross-cultural understanding and dialogue on stem cell treatments.

Conspiracy Theory

According to an email we received today from a Beike administrator, the WSJ piece on Chinese Stem Cells published yesterday both misquoted and mis-represented the comments made by Ms. Bogert and Ms. Nguyen, the mothers of the boys treated at the Shenzhen Nanshan Hospital.

There is already enough controversy over the ethics of stem cell therapy before calling into question the legitimacy and effectiveness of the institutions offering such treatments. Most people acknowledge that such treatments exist in bona fide hospitals administered by credentialed physicians. However, the jury is still out on the effectiveness of stem cell-based therapies and the possible complications. Patients, their family members, doctors and other experts are interviewed for their perspective and knowledge of the issue. This is where the trouble begins.

Ms. Nguyen and Ms. Bogert are not the first people who complained about their words being taken out of context to apparently support a reporter's biased conclusion. Dr. Susan Perlman of UCLA faced a similar situation when she was interviewed and quoted in a Business Week article in February 2007. I do not know Ms. Nguyen and Ms. Bogert personally, but I have no doubt that they are honest people and loving parents. Dr. Perlman is Richard's doctor, I trust her implicitly. As far as I am concerned, none of these three women would lie about their views being misrepresented.

I don't know why journalists would deliberately violate their integrity in order to conform to a popular or more socially acceptable point of view. Just look at the majority of articles we've linked on our blog - the consensus is by far more pessimistic than not. Is it a case of schadenfreude in suggesting that the Chinese are failing, thus justifying the collective foot-dragging of the Western world in developing stem cell treatments or even researching the therapeutic possibilities? In the meantime, this type of negative press further polarizes the proponents and opponents of stem cell treatment. Current press coverage leads the proponents to believe that any progress will always be sabotaged by the opponents.

I am not one to subscribe to conspiracy theories nor am I willing to be mired in the emotional Strum und Draug that clouds this issue. We went to Shenzhen with the understanding that there was no promise or guarantee that the treatment would be effective. We went anyway because if we didn't try, we'll never find out. Has the treatment worked? Only time will tell. Even if it wasn't effective for Richard does not mean that it wouldn't help others. In the end it is up to each of us to decide what is right regardless of what others tell you or what you've read.

Article in today's Wall Street Journal

Just a quick post --- there's an interesting article in today's Wall Street Journal about Chinese Stem Cell Therapy. More specifically, it features the Shenzhen Nanshan Hospital, Beike and ex-Nanshan patients.

Unfortunately, the WSJ is one of those publications that requires a paid subscription in order to peruse its content. I cannot therefore post a direct link to the article. Nevertheless, for those who subscribe to the Journal either electronically and/or in paper format, the title to the article is "Seeking Hope in Chinese Stem Cells" and it is written by Nicholas Zamiska. It appears in Section B page 1.

What makes the story even more poignant is the fact the patients featured are children from California. Richard worked for 20 years in Cupertino where the Nguyen family hails from.

Second Month Progress Report

Haven't posted for a while. We've been back for over two months now. There's not much change, for better or worse. Aside for the sprained ankle, we've noticed that Richard has a few minor setbacks in choking, manual dexterity and energy level. Perhaps Richard will ask his doctor to increase the dosage of Prozac to control the choking. The power web OT finger exerciser is on order and will be arriving soon. In terms of energy, Richard is resuming his Creatine powder drinks that he had let lapsed after we came back from China.

On a positive note, Richard is doing better at our weekly Pilates class. He's not huffing and puffing. Also his walks on the treadmill are steadier, faster and longer. He continues to go to the Y and uses his recumbent bike to maintain strength in his limbs. Lately, he's taken to wearing an eye patch over one eye while riding in the car to lessen his double vision. I can't help but laugh every time I glance at my rear view mirror and see this pirate in my car.

It is hard to keep up with the daily exercise regimen at home. I think that's why staying at Nanshan produced better results. At the hospital, Richard is removed from the conveniences and luxuries of home so that his main focus is his daily PT and OT. Once back home, there are the cable TV, the internet, books, magazines and newspapers, not to mention a soft, comfortable easy chair to tempt him into taking it easy.

Our friend and fellow Nanshan Ataxian, Nick, recently sent us an interesting link about a man who gave a presentation at this year's NAF (National Ataxia Foundation) conference about his unique system of training someone with Ataxia to walk unassisted:

http://www.walkingwithataxia.com/

Richard is in the process of checking it out. It would be great if it works. Thanks, Nick!

There are two annual events that we plan on attending. They are:

ACARM (All California Ataxia Research Meeting) held at Irvine, CA on October 14, 2007

http://home.comcast.net/~fernandesml/ACARM6.pdf

and the NAF Annual Membership Meeting held at Las Vegas, NV on March 28 - 30, 2008

http://www.ataxia.org/pdf/2008AMMDestinationInformation.pdf

Our stem cell class at Stanford starts next Monday. I have yet to do the first assignment which is to read the first chapter of the lecturer's, Christopher Thomas Scott, book. Richard and I are looking forward to learning more about the subject. It is a good thing that there's so much progress made and yet for the afflicted, it doesn't seem to happen fast enough.

Exercise Redux and other ramblings

Here is a quick update as to the goings on ....

the ankle has been steadily improving. I'd say that it is about 95% of where it was.

we now have a treadmill at home so that instead of pacing up and down the hall, I can exercise while being in one place.

after a recent physical examination, my GP also added his support for future prospects for stem cell treatment.


I realize how much bio-technology has advanced over the years.. I am reminded of an incident several years ago where I had to attend a remedial traffic school session. It was held at a local middle school's science classroom on the weekend (~ 8th grade). During one class break, I pondered at some of the posters on the bulletin board. The subject of the poster: DNA.

I attended college in the late '70s (not majoring in any biotechnology related discipline) and had attended the 8th grade in the early '70s. Suffice it to say that DNA was never even mentioned in the textbooks and was the subject of cutting edge research. I only have to imagine where topics such as RNAi, stem cells, nuclear transfer, blastocyst, etc. were mentioned in closed laboratory offices and technical conferences.

Potpourri

Richard's ankle is finally healing and he's easing himself back into his exercise routine. His Pilates session last Thursday produced profuse sweating and an alarmingly pale face that I have not seen since his first stem cell injection more than two months ago. It is sobering to realize how quickly the body atrophies. On a more positive note, Richard has found that he no longer has to use to the bathroom at night since returning from China.

One of the many symptoms of MJD is frequent nocturnal urination. A few days before we were scheduled to leave Nanshan, Richard woke up in the morning and realized that he slept through the night without having to use the bathroom. He was cautiously optimistic at first, fearing that it was a fluke. For the past month, unless he drinks copious amounts of coffee after dinner, he seldom finds himself waking in the middle of the night to visit the bathroom.

We finally bought a treadmill which will be delivered and installed tomorrow. Together with the recumbent bicycle and hand weights, Richard will have a fairly complete set up for his PT. I've located an online vendor that sells parallel bars and OT supplies. Those will be next. Richard's manual dexterity has started to worsen a bit so I need to get him to do the OT exercises.

We will be attending a seminar given by the Stanford Institute for Stem Cell Biology and Regenerative Medicine on "Harnessing the Power of Stem Cells" tomorrow evening. The keynote speaker is Dr. Irving L. Weissman, the director of the Institute and co-founder of biotech company, StemCells, Inc. There will be two other lectures that evening on "Embryonic Stem Cells" and "The role of stem cell treatment in the repair of the brain and its functions".

Furthermore, thanks to our friend, Cathy, who pointed out the course to us, we've enrolled in the course "Straight Talk about Stems Cells" at the Stanford Continuing Studies Program. Here's a link to the course description:

https://continuingstudies.stanford.edu/course/BIO53.asp

Our objective is to keep abreast of the latest development in stem cell treatment in the United States in the hopes that it will be available in the U.S. in the very near future.

Speaking of stem cell treatments, our friend Fabio emailed us two interesting links recently. Fabio's mother, Nadja, has ALS and was treated at Nanshan the same time we were there. The following links are of facilities offering stem cell treatments in Cologne, Germany and the Ukraine respectively:

http://xcell-center.propreventa.net/index.php?id=|&L=1

http://www.emcell.com/

Breakpoint

I was first introduced to the book "Breakpoint" by Richard A. Clarke while resting in my Nanshan Hospital room after a lumbar punch. It was an audio book that I downloaded from Apple's iTunes. It touches on so many of the issues pertaining to my recent trip to China and my own experiences at home:

• stem cell therapy
• China's emergence as a world power
• the World Wide Web
  
• Cambridge, Massachusetts
  
• two of its major universities,
  
• the Charles Hotel in Cambridge

• the Googleplex in Mountain View, CA
  
• bionic parents and techno-children (see link below)
  

http://www.salon.com/mwt/feature/2007/05/09/everything_conceivable/?source=newsletter

Now for my 2 cents.... what are the ethics concerning stem cell therapy? Should it be restricted to correcting nature's defects and/or injury or could it be used to enhance our lives? How will stem cell therapy affect the natural evolution process? Is there a gray area?

Is stem cell therapy just for the wealthy? How else does the cost and knowledge come?
Here is my opinion regarding the first question.

• What are the ethics for stem cell therapy?
  

• To the extent that we understand what is "wrong", correcting the disease or injury is reasonable. For example, restoring a person's health after paralysis due to spinal cord injury seems reasonable. I would include correcting for a known defect. This doesn't deal with the matter of testing for potential "defects" which is a volatile question in and by itself.
  
• Enhancing the genetic makeup without a known "deficiency" seems wrong. As depicted in the book, designer babies where one buys features like shopping for a car caters to the wealthy.
• Is there a gray area? Taking advantage of an opportunity to apply the latest and greatest technology falls in this category. To imagine what I'm referring to, think of The Six Million Dollar Man . Also, NBC's Fall 2007 TV lineup includes the Bionic Woman.
  

Take a look at the book or listen to the audio version. I highly recommend it.

• Is stem cell therapy just for the wealthy?
  
• How else does the cost come down and the experience come about? There seem to be very few organizations willing to foot the bill. Even the "wealthy", as individuals, cannot sustain such an effort on a broad front. The primary thrust needs to come from the support of governments which are among the few institutions large enough to support such an effort.
  

A note on my progress. After returning from LA, I re-sprained my left ankle, The good news is that it isn't broken or fractured. The bad news is that I restarted the healing time after two and a half weeks and the ankle is still a little swollen.

Signs and Wonders

We just got back from Los Angeles and our visit with Dr. Perlman at UCLA. After a thorough examination, Dr. Perlman determined that Richard has a 3 point improvement in his SARA (Scale for the Assessment & Rating of Ataxia) score which demonstrated a measurable difference in his condition post-stem cell treatment.

As we understand it, the SARA scale ranges from 0 to 40 with 40 being the worst possible ataxia score. Just prior to our China trip in early March 2007, Richard's score was around 16 or 17. His score this past Monday was about 14. Of the eight areas (gait, stance, sitting, speech, finger chase, finger-nose test, fast alternating hand movements, and heel-shin slide) that SARA measure, Richard showed improvements in gait, stance, alternating hand movements and heel-shin slide. Richard demonstrated that he can now stand upright without support for an extended period of time. His gait while ambulating on his walker was much steadier. When asked to walk while holding unto my arms, he surprised me by only placing his hands lightly on my arms. In previous times, his grip was vice-like. His alternating hand movements appeared to be smoother as was his heel-shin slide.

We are very encouraged by these quantifiable improvements and believe that Richard will continue to do better as his ankle is almost all healed and he can resume his exercises at home and at the gym. Our daughter, Andrea, has just finished her year at college and flew back home with us today. We hope that with Andrea's, my and Jovie's (Richard's new CNA) assistance, Richard will be able to get enough PT and OT workouts most days of the week. Jovie is a great asset since he is quite familiar with PT exercises and is able to make suggestions to Richard while accompanying Richard to the gym at the Y.

Top Ten Reasons Why I'm Glad To Be Home From Nanshan Hospital

• Food is available in a wider choice than Chinese food, KFC, McDonald's, or pizza
• Folks address you in a language you understand
• You can sleep in without worrying about the hospital staff awakening you
  
• You can cross the street without getting run over
• People will hold open the elevator for you
• I can see the sun a lot more
  
• You can use your credit card to buy something without worrying, "Am I carrying enough cash?"
• Web sites are all accessible
• You don't have to decide which side of your body to insert the needle

And finally ...

• Nothing else compares with the comfort of your own bed, pillow, and blanket
  

I made my second trip to the YMCA the other day. Unlike the prior week, my muscles weren't quivering. As Lily had mentioned, I just wish I hadn't sprained my ankle and that this insomnia would go away.

May Day

We've been back for two weeks now. There's not much progress to report. Jet lag is the most formidable obstacle in our "recovery" process while our friends and family are the best facilitators. Unfortunately, Richard sprained his ankle a few days ago. Despite ice packs and elevating the foot, it is still visibly swollen and bruised. I suspect that it'll take some time to heal.

In terms of PT and OT, Richard has gone back to the local Y for his regular weight training on the different machines. As he has written in his previous post, it has been tough going. His energy level and stamina is good but not as good as when he was in Shenzhen. We attribute this to jet lag and the lack of the rigorous Nanshan PT regime. There is no OT at the moment because we're still looking for the tools needed to replicate Dr. Ye's exercises.

Jet lag has hit Richard much harder than it has hit me. He has been sleeping very badly at night and often does not drift off until dawn. He then sleeps until late morning. In a last ditch effort, he decided to take Ambien at bedtime in an attempt to reset his body clock. It has worked well the last two nights. However, on the first night, he had night terrors that woke me up. As usual with his night terrors, he did not recall the details of his dreams. However he said that it is proof enough that he is getting to the REM stage of sleep that is restorative. I will keep a close eye on his Ambien intake to make sure that it does not become a regular habit.

Today is May Day which marks the start of the Golden Week, the annual seven day national holiday in China. My thoughts wander to Nanshan and the patients on the Stem Cell Ward. It will be trying for them this coming week since the hospital will be operating with a skeleton crew. Restaurants, shops and tourist attractions will be similarly affected, but I'm sure that the Beike staff will make sure that everything is taken care of.

We head to LA this Saturday for Richard's check up with Dr. Perlman at UCLA on the following Monday. It will be interesting to see what the check up reveals.

Exercise is the yuppie version of bulimia

The title is from a book titled Food Worship. Being born in the late '50s, I would call myself a late Baby Boomer. Growing up in New York and attending college in the east, I've seen my share of Yuppies.

I physically don't enjoy the act of exercising. I don't mind what I do to pass the time but that is not the motive itself. I do it both out of necessity as well as liking the results.

Before Shenzhen, I would visit the YMCA once or twice a week, do Pilates with Lily once a week, and go on an exercise bike at home on the other days of the week. The emphasis would be "balance neutral" activities.

Since our trip to Asia, the emphasis shifted to sustaining and enhancing the skills taught by the various therapists to put the stem cells to use. Exercises taught and practiced in China would be duplicated if possible. Easiest among these was adding some weights for arm exercises. Not losing the strength I had before is another story.

Yesterday was my first visit to the local YMCA since returning. I wasn't so much panting as certain muscles were quivering near the end of the repetitions. Muscles that were used to 70 pounds two months ago were trembling at the same settings.

It has become apparent that after just a month of disuse, muscles can very easily atrophy. Avoiding injury has a renewed importance. I can't wait to see how Pilates goes at the end of the week.

I wish I had an answer to that, because I'm tired of answering that question

The title is another Yogi Berra-ism. The question I am referring to of course is, 'Have I noticed any improvement?" I did not mean to be cynical in my response to this question. Everyone asking has been sincerely wishing me good luck. I just thought it was an amusing quote.

For those who don't know who Yogi Berra is, he is a former NY Yankee baseball catcher in the late '40s and '50s and manager in the '60s. See http://www.yogiberra.com/yogi-isms.html for his web site and some of his other quotes.

The answer is yes, I have noticed change, mostly improvement. I attribute this to both the intensive therapy and the stem cells. The way I think of it, most tasks require a combination of strength and control. Muscles can easily atrophy from disuse thus losing their strength. Therapy and acupuncture help restore this. Control is via the brain. The fresh stem cells are intended to rejuvenate this. Without both, neither effort alone isn't brought to its maximum benefit.

Some of the specifics in my case are as follows. I've updated this web site with a final handwriting sample (see below). While folks' comments have ranged from the samples look "comparable" to "some improvement" to "noticeable improvement", I can say that my writing is tighter and more controlled, and my hand cramps less. The former would be due to stem cells while the latter I would attribute to therapy (i.e. hand strengthening exercises and hand massage).

Another example is upright walking. I still use a walker. However, I have a narrower gait and I look straight ahead more so (rather than down at my feet). I always had the strength to do the walking. I think the stem cells helped improved the control. However, many of the physical therapy exercises were geared to reteaching the brain what had been forgotten after years of disuse.

I plan to revisit both my local neurologist and Dr. Perlman @UCLA within the next two weeks for an "after" picture. Hopefully, I can present a less subjective view after these appointments.

On a separate note, many friends have wanted to welcome us back home, often by offering to eat out together. With doctor's appointments and jet lag, our availability has been somewhat limited in the past week. We wanted to thank everyone for their well wishes and kind gestures and look forward to getting together and thanking you personally soon.

Life in the slow lane

Home at last! Our stay in Hong Kong was restorative in every sense --- family, food and rest. Delectable food, feather-soft beds, showers so bracing that the water literally excoriates dirt off the skin and coddling from Mom made up for a month's worth of boot camp. Oh, did I mention shopping? However, there's no place like home. We missed the clear blue skies, the mild dry weather and the refreshing clean air. Our lungs thank us!

Today is devoted to sorting through a month's worth of mail and recent emails, shopping for groceries, unpacking, doing laundry and battling jet lag. This left no time for Richard to resume his rehab. He has used the exercise center at the hotel in Hong Kong once or twice but it paled in comparison to the twice daily PT & OT regime at Nanshan. Our goal is to have him ramp back up to an hour of exercise per day. Aside from the recumbent bicycle, workouts at the Y and weekly Pilates, we plan on purchasing a treadmill and using it as per the recommendations of Big Dr. Lee. Also, I'll be looking for pegboards and the nut and screw board that Dr. Ye used on Richard during OT. These are possibly available at teaching supplies store. Acupuncture and throat collar will be impossible to replicate here. Although our friends Jeanne and Cathy have recommended a good local acupuncturist that we may try out in the future.

We will try to post updates on this blog to avoid the dreaded silence that so often occurs when the patient returns home after the stem cell treatment. Richard is slated for a visit with Dr. Perlman at UCLA at the beginning of May. We will be certain to post her comments and any findings of the visit.

*Speaking of posts, the photos of the "So long and thanks for all the fish" post are up again and this time they are captioned.

Bon Voyage - The Return Home

It's Monday morning here in Hong Kong. It's our last full day here in Asia. I'm in the hotel lobby banging away at the keyboard, checking e-mail, etc. I've cleared out of the room so that it can be cleaned up.

I just went on the exercise bike in the "fitness area" for about 20 minutes. I could/should put in more exercise time but it's easy to succumb to visiting family, eating out, etc.

We've already started to hear from recent patients from the stem cell ward. The cheering on continues. Some folks have had more adventurous returns. We depart for home Tuesday evening. Fortunately, it's a non-stop flight for us and we don't have excessive luggage.

Also, a quick update. The renewed choking while eating went away when I brought the food to my mouth and stopped craning my neck. Problem understood.

So Long, and Thanks for All The Fish

This entry is dedicated to our daughter, Andrea, who is a great fan of the Hitchhiker's series by Douglas Adams where the title of this entry originated.

As we wrap things up here at Nanshan, we thought that it's time for a bit of show and tell. This post will be light on text and heavy on pictures.


Nurses and Camillia (in pink). Camillia is the member of the Beike staff who exchanges your dollars for RMB/yuan.

Dr. Yang (the younger). The other Dr. Yang (the elder) is the chief neurologist.

The cleaning ladies. They have an extra set of the room keys and can help you get back into your room if you accidentally lock yourself out.

Dr. Kitty Guo (far left in stripe skirt), nurses, and Dr. Yang posing with a banner that we've presented to all the doctors, nurses and staff of the Stem Cell Ward to thank them for the excellent care that Richard has received. The woman directly behind Richard in the dark top is Lily, the head nurse. Dr. Guo is the Beike staff member who is in charge of scheduling the stem cell injections.

Big Dr. Lee, Little Dr. Lee, Dr. Wang, Dr. Shu and Dr. Ye with the banner that we've presented to Big Dr. Lee and Dr. Ye thanking them for the care they've provided to Richard.

Big Dr. Lee (PT & acupuncture) & Dr. Ye (OT) with banner.

With Dr. Ye and the collar that sends out electrical pulses to the throat.

Dr. Ye & Big Grace, the Beike program manager.

Little Grace and Cherry, the Beike staff member in charge of the PT & OT (4th) Floor.

Dora, Beike program patient manager and Jillian.

Nadia, Helen, Paola and Ylenia. Nadia & Ylenia are from Brembate, Italy. Paola is from Sardinia, Italy and Helen is from Florida.

John and Will from Thomasville, Georgia.

Ylenia and Fabio (Nadia's son) from Brembate, Italy.

Enid and her husband, Benny from Johannesberg, South Africa.

With Frank, the Ataxia patient from Hong Kong. All stem cell patients from Hong Kong and China are put on the 4th Floor of Nanshan.

The home stretch

These last two days have been a whirlwind of activity. We didn't think that anyone would notice that we did not post yesterday but Ernesto did! Yesterday marked the 20th anniversary of my father's passing. My mother held a Buddhist memorial service in Hong Kong which lasted from 9am to 4pm. I went to Hong Kong in order to participate in part of the activities but hurried back just in time for Richard's 4pm LP. The procedure lasted a little longer than usual because Richard misunderstood the doctor's instructions and straightened out his back too soon during the injection. Luckily there were no complications and he had a restful night's sleep, waking up headache free.

Before going to bed last night, Richard was treated to Paola's homemade pizza. Paola is from Sardinia, Italy. She is accompanying her brother, Antonio, who has ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig's Disease) to Nanshan for treatment. I got her some Italian pasta, spaghetti sauce, tomato sauce and olive bread while I was shopping for groceries at Portofino. She was overjoyed because she couldn't find any of these ingredients locally at Nanshan. Thus, she returned the favor by making Richard the delicious pizza.

Today I went with my sister and brother-in-law to visit my father and grandmother's grave sites. They were both buried in Shenzhen. Richard, on the other hand, was invited to tour a new hospital facility in Shenzhen that Beike is considering as a potential candidate. The Beike staff wanted Richard to provide them with feedback from the patient's point of view in terms of accessibility and desirability of the facilities inside this hospital. As a result, he missed the afternoon sessions of both PT and OT.

We find that time seems to zip by as we head towards the home stretch of our stay in Nanshan. We've decided to check out of the hospital early to spend time in Hong Kong for some R&R and to visit my mother. If all goes as planned, we'll be leaving Shenzhen late Saturday morning for Hong Kong. Tomorrow will be our next to last day at the hospital. We plan to put it to good use as we bid our fond farewells to the doctors, nurses, staff and patients who we've grown very close to and fond of during our time here.

P.S. We've posted a sample of Richard's handwriting after 3 weeks of treatment at Nanshan in the right hand column under "Before and After". Is there improvement? You'll be the judge.

The bells of Portofino

Not too long ago, Shenzhen was a small, backwater fishing village with a relatively sparse population. When Hong Kong was still a British Crown Colony, people in China use to come to Shenzhen for a chance to enter Hong Kong illegally by swimming across the narrow body of water that separated the two cities. Many were bitten and killed by sharks that infested this area or drowned by the rip tides.

Nowadays, this ex-Tijuana of the East has become one of the major centers of China's high tech industries, attracting overseas Chinese from America and Canada and expats of all nationalities who make their homes here. Most of these foreign newcomers live in Shekou (Snake's mouth) which is just 15 minutes from Nanshan. For the prodigal sons and daughters of China returning from America, Canada and Taiwan, there is the Disneysque OCT (Overseas Chinese Town) in Shekou. Inside OCT is a small oasis called Portofino. It is a prestigious, gated community of homes, shops, cafes and restaurants built to resemble Portofino, Italy. There is even a miniature lake in the middle of the complex. By the lake is the town square complete with its own bell tower whose ear-splitting bell strikes every hour on the hour. Quasimodo would feel quite at home here.

Last Sunday evening, Richard and I decided to "go on a date" at the Portofino. We arrived in the late afternoon and strolled around. We bought freshly baked croissants and French jam for breakfast and foccacia bread, Barilla pasta and tomato sauce for dinner the next day. The entire complex was fully handicap-accessible with ramps everywhere. This is the first time that we've seen ADA facilities in Shenzhen. However, some shops and restaurants still have steps and thresholds that are challenging for the mobility-impaired. We spent the rest of the evening dining al fresco at an excellent restaurant with a view of the lake. It is amazing what a nice evening out can do for the soul.

My sister, brother-in-law, Aunt Lucy, Uncle Robert and cousin Mei Ling all came to visit us today. We're very lucky to have relatives locally. My sister and brother-in-law are visiting from Toronto, Canada and we were overjoyed to see them since it has been some time that we've seen them last. We are eagerly waiting for Richard's last stem cell injection by LP tomorrow. Wish him luck!

Top Ten Reasons You Know It Is Time to Go Home

When You Look Like Your Passport Photo, It's Time To Go Home - Erma Bombeck

You consider discharging goods you bought a few weeks back because of concerns of excess luggage

The delivery boy from Papa John's Pizza is on a first name basis with you

You are bored of KFC and McDonald's

You act out all your PT and OT exercises in your dreams

The person on the restaurant takeout phone says, "Oh, it's you again."

The following quote makes sense: "Healing is 90% attitude, 90% medication"
[ I had to insert this bit of Yogi Berra-ism ]

You know your way around Lo Wu City shopping center

The street vendors recognize you and refuse to bargain with you

You are greeted in every language except English

It was extra busy at PT and OT today because the interns have just finished their training and the doctors are left to tend to all the patients by themselves. Godzilla (the construction machinery) is again screeching for her young.

We had an interesting encounter in OT. We met a Chinese ataxia patient who is being treated with stem cells on a different floor. He is from Hong Kong and has SCA6. He says that there are about 100 known ataxia patients in Hong Kong. As we find out more information, we'll post it.

We're on the home stretch now. I'm feeling energetic enough to use my walker within the hospital building. In the evening, as I walked on the floor I heard one of the Italian patients called, "Bravo Ricardo!!" Subtle signs of improvement have been noticed.

The Caregiver

Usually a family member or close relative or friend, the caregiver will assist you with the basic needs that might arise. This is especially true for companionship. Depending upon who this person is, he or she may also act as the patient's advocate. She has the additional objective of looking out for the patient's interests during and after the treatment.

A true luxury is when the same person remains for the entire stay, normally a month. Very often, the patient will be escorted to/from Shenzhen but will have to hire a local caregiver. The disruption in work and vacation time for the caregiver may be excessive.

There also is the act of being away from friends and other familiar surroundings for an extended period. Living out of a suitcase, determining where your next meal will come from are all hardships. The disruption of "living conditions" is traumatic; after all, since when is a hospital setting the first choice for lodging? Also, Shenzhen is a very dense urban environment. There is only a fraction of the population that is comfortable in those surroundings.

Now add the ever present "foreign tongue". There are only several Asian countries that would be considered fluent in the Mandarin dialect.

I have been very, very fortunate. My wife, Lily, has performed so many of the above tasks flawlessly and I've benefited from a top notch advocate. We visited with local relatives and expect to see more in the coming days. However, dislocation from friends and familiar surroundings have taken its toll. We are anxiously awaiting our return home.

Friday was my fourth of five stem cell injections. No headaches and all is progressing without any complications from this latest lumbar puncture. The rash mentioned in an earlier posting has subsided. The last stem cell injection is due Wednesday.

We've noticed a little bit more choking/gagging during meal times. I think we correlated this with eating in the hospital room. Since unlike home, I cannot wheel up to the table in my wheelchair, I either have to crane my neck (and risk a gag reflex) or risk some spillage by bringing my food over my lap to my mouth (without craning my neck). In restaurants, I don't seem to choke because I can wheel up to the table. I'll mention my findings in one of my next posts.

Days of our lives

Our friend and neighbor, Jane Ellen, once jokingly referred to this blog as her daily dose of "Reality Show". Little did she know how right she was. The comings and goings of the residents of 14th Floor Taoyuan Road rival those of the denizens at Melrose Place. There is courtship between the young nurse and her patient's son that eventually fizzled out. Then there is Lady Machiavelli who so skillfully manipulated me that I fell into her trap willingly. But in general, the folks here are kind, decent people caught in the same predicament of watching their loved ones suffer from some incurable disease and are doing the best they can to get along with each other.

There is much camaraderie amongst us. We check-in with each other on a daily basis. If we find someone missing at the PT sessions, we make it a point to verify that he/she is well. We also cheer each other on and celebrate even the smallest moments of triumph when someone is able to gain feeling in her finger for the first time in ten years. We share the highest of highs and the lowest of lows. With so many nationalities and close living quarters it is a small miracle that we all get along so well. United Nations can certainly learn something from us.

However, not all patients and their caregivers participate in this commune. Some are more reserved in nature and prefer to keep to themselves. We find that the language barrier can be daunting to many, this is especially true for the Italian and Eastern European patients. Then of course, there is the occasional oddity in the form of Mr. Body Beautiful who I've described in my post "The naked man on the floor". He almost never left his room at all during his entire stay here.

Because our weekdays are full with rehab and injections, the only chance that we get to go out either by ourselves or in a group is on the weekend. We've ventured out with a group to Sea World and had a nice, leisurely dinner at a fantastic Italian restaurant one evening. Then there were short shopping trips locally for groceries and to Lowu Commercial City for souvenirs. Most weekday evenings we while away our time surfing the net, posting to the blog or catching one of the movies that we've brought with us.

Some evenings we have impromptu going-away pizza parties in the common room. We make a toast (with Coke) to the ones who are leaving and exchange addresses and phone numbers with promises to stay in touch. We've missed Debbie and Sue from Canada who are the most fun and down-to-earth people we know, David and Karen from Scotland, and Nick and Maria from Buffalo, NY. It is generally a good idea to try to get to know the people on the floor. Aside from providing moral support, the ones who have been there for a while are invaluable resources as you try to figure out the protocol of the program.

Richard continues to do well. The bruise on his hand and the rash on his body have resolved themselves. He has started to ambulate around the floor with his walker. The most noticeable improvement so far is his stamina and energy level. He is now able to shorten his naps and stay up a lot longer. The evening that we went for dinner at the Italian restaurant, we did not get back to the hospital until past 11:30pm. At home, he is usually in bed by 10pm. His gait and upper body stability are also good. We continue to be hopeful for further improvements.

The Impeach Box

By the bank of elevators on the Stem Cell floor is an inconspicuous metal box affixed to the wall. The English words “Impeach Box” appear in bright orange letters on it. Below these letters are the Chinese characters for “Complaints Box”. “Chinglish” signs can be found everywhere both inside and outside the hospital. Some are side-splittingly funny while others are just plain mystifying. My favorite so far is the phrase “tenderly reminding” which prefaces every bulletin and warning posted in the corridors and elevators. We are hereby lovingly and gently reminded that there is no smoking in the waiting areas and that certain exits will be inaccessible after certain hours.

Speaking about the Impeach Box, I would like to submit the following item for consideration:

Yesterday afternoon while Richard and I were at PT, I received a sharp rap on the top of my head by Dr. X (to protect his privacy, he will be unnamed), a PT doctor/therapist, who then upbraided me for sitting on the a piece of rehab equipment. I was in a state of shock because in the entire three weeks that we’ve been in PT, Dr. X has never spoken to me, save once. A week or two ago he told me that I could not park Richard’s wheelchair in the PT room. My cousin from Shanghai was visiting us at the hospital then. My cousin was the one who put the wheelchair there because she was not aware of the rules. Nevertheless, I apologized to Dr. X and brought the chair out.

Going back to the rap on my head, I reacted by jumping off the rehab equipment that I was sitting on (it was a padded bed with a U-shaped indentation at the head of the bed). Apparently, I was being reprimanded for sitting on the head of the bed. Richard has never used this piece of apparatus before for his PT. There were no signs or warnings posted in either Chinese or English on the equipment. It was not intuitively obviously, at least to me, that the head of the bed was fragile. The knock on my head was not painful but it had enough impact to be jarring both mentally and physically. I was embarrassed to be treated like a naughty child in front of all the patients, their caregivers and other therapists.

As the day progressed, I could sense a feeling of unease welling up inside of me. But I couldn't put my finger on why I was feeling that way. Later that night, I lay in bed running the day’s events through my mind. Was Dr. X’s rap on the head a Draconian punishment? More fundamental that that, what excuse does he have to meter out punishment to me, a stranger? Does he even have the right to even touch my head without asking? Could a similar incident happen in the United States or any other parts of the world? Yes, no, no and probably no in other parts of the world.

Because I could not think of a single occasion that I have offended Dr. X, it is baffling to me that this person should resort to physical force to get my attention. The only explanation that I could come up with is that I was the chosen victim or some scapegoat for their discontent. I did not come 7,000 miles to be someone’s punching bag. This thought so disturbed me that I had a sleepless night.

This morning, I spoke to Grace and Dora, the Beike program and patient managers at Nanshan. They were sympathetic and promised me that they’ll investigate the matter. I had two objectives in reporting this incident. First, I want to bring to their attention that such behavior is totally inappropriate and unacceptable. Even if it is condoned in China, which I doubt, I will not tolerate it. Secondly, I told them that if Dr. X were ever to behave inappropriately towards me again, I will take my compliant to a higher level.

A short while after, Dora came to my room and told me that she and Grace have had a chat with Dr. X. He was surprised that I had taken such offense to his “playful trick”. Furthermore, Dr. X had misinterpreted my rueful smile after receiving the rap on the head to be a smile of pleasure. Dora explained that Dr. X was totally caught off-guard by my complaint. Dr. X thought that I understood that he was just being “playful”.

I can see how I might have blown the whole incident off as high jinx had it been big Dr. Lee or the other doctors/therapists who had administered the blow. Over the last three weeks, I have chatted up all the doctors/therapists in both the PT and OT areas but Dr. X. Beyond the quick nod or “good morning” now and then, I have never elicited any conversation from Dr. X before. It therefore makes no sense that he would consider himself acquainted enough to “play a trick” on me.

For now, I will give him the benefit of the doubt. In the meantime, this unfortunate incident was the straw that broke the camel’s back. More than ever, I yearn for my family and friends, for their soothing words and touch, for their skill in coaxing me out of my melancholy. I am exhausted and demoralized. I remind myself that there is only another week left and it can’t come too soon.

Beginning yesterday, Richard has developed a mysterious rash on his upper torso and buttocks. Although the rash is somewhat noticeable, it is neither itchy nor painful nor does he have a fever. The two Dr. Yangs wanted Richard to be seen by a dermatologist at the outpatient clinic. This poor dermatologist was dispatched three times yesterday afternoon to come up to our room for a consult and all three times we were out at PT or OT or on our way up to the room.

We finally saw the dermatologist today and she confirmed that it was nothing more alarming than some sort of contact dermatitis resulting from either the recent changes in weather or the new detergent that the laundry company was using. (We have been sending our laundry out to be washed since the humid weather makes it impossible to air-dry clothing) She prescribed some skin ointment and oral medication. Richard is now resting comfortably on his bed waiting for the stem cells to arrive for his third lumbar puncture at 4pm.

Food glorious food - but beware

China is very much a developed country, with some caveats. Specifically, one should be cautious with foods. The following advice comes from my own experiences in China and Hong Kong:

One should expect packaged and bottled goods to be fine. I would avoid street vendors, but most established sit-down restaurants are fine. Also, delivered cooked foods are fine, but raw fruits and vegetables must be washed thoroughly. I would avoid the skins of most fruits. Salads are not widely served, perhaps for a reason.

Tap water is fine for gargling such as when you brush your teeth. However, I would only drink boiled water or bottled beverages. Beware of iced drinks since the ice cubes may be made from tap water.

There are some special rules for seafood. I would avoid uncooked shellfish and probably uncooked fish in general (i.e. sushi). Cooked seafood I would consume but in limited quantities.

End of my sermonizing.

Godzilla hasn't called the last two mornings so we've been able to sleep in a little more. Godzilla is our nickname for the construction machinery. We met son of Godzilla in the freight elevator the other day in the form of a rusted trolley. The screeching sound was spine tingling.

Today was a little different in the hospital. The morning routine includes Acupuncture and Physical Therapy. Dr. Lee suggested that instead of using a wheelchair within the hospital, I need to get up and use my walker. Morning PT was also delayed as I've developed a non-itchy rash. I hope I didn't upset the dermatologist when I failed to be in my room when she came by. I'll trek over there tomorrow (Friday) morning probably.

Lunch was interesting as Lily and I went to dim sum with several key Beike staff members, Dr. Hu, Jon, and Grace. We were originally to go with two other patients and their caregivers but due to a mix up, they had to cancel last minute.

The conversation over lunch focused on how to "get out the message" that stem cells are real and are available. I now have a sense why Beike has been successful in Canada, Italy, Romania and Hungary but not as widely represented (though by no means zero) in the rest of the world.

Hope

I was intrigued by the comments made by a patient in this ward. There are so many differences in the patients here: language, culture, nationality, injury/disease type, etc. The common thread though is hope. Everyone has refused to accept the response, "There is nothing more that can be done." It is one thing to be trapped in a dark room and another to look for the light that will guide you to the exit.

Today is a typical weekday in the hospital. The morning routine includes Acupuncture and Physical Therapy with PT and OT in the afternoon. The hospital staff is hoping for some visible progress as proof of the effectiveness of my treatment (like unassisted upright walking). The intangibles resulting from the stem cell therapy and rehab are better energy level and more control of my upper body.

Over the Hump Day

We're roughly at the half way point of our stay and no longer seem to be the strangers among the patients. Moreover, we are envious of those who are leaving before us. We're longing for a meal at our favorite restaurant, the sight of friends and family ... in short, we're missing home!

Health wise, I'm feeling fine. I'm very glad that Monday's stem cells for me was via IV. Gone were the restrictions of bed rest and no food for six hours after the lumbar punch. This was especially crucial given that stem cells didn't arrive until 8 PM that night.

My next stem cells (fourth of five) are scheduled for Friday via lumbar puncture. So far, I would guess that my energy level is better and my upper body seems steadier. During PT, I need to retrain my brain on how to walk with a regular gait.

I think it is wise to always check with the medical staff often to ensure that one's stem cell injections happen when promised and are of the desired type (IV, lumbar puncture, etc). Give about a week before the last injections in case any changes are required; you never know if there might be unannounced changes.

I also added a link to the Google Earth community on the post "You Can Run But You Can't Hide". To use the facility, you do not have to register with Google (thanks to the suggestionof an anonymous comment). Zooming around the earth on a flying tour is pretty cool.

Have you eaten yet?

With a population of over 1.3 billion people, it is little wonder that there's such significance placed on food in China. One of the most common greetings among the Cantonese is "Have you eaten yet?" In fact, the Cantonese are known to be the most finicky of gourmets whose insatiable quest for the freshest and most exotic of dishes earned them the reputation of "eating everything that has four legs except a table and everything that flies except an airplane."

It is therefore the ultimate irony that I cannot find a decent Cantonese restaurant around Nanshan Hospital. Not only are restaurants specializing in the local cuisine far and in between but the variety of the dishes on the menu dismal and inadequate. By contrast, there are Szechuan restaurants, Mongolian restaurants, Shanghainese restaurants, Peking restaurants, Shandong restaurants galore. I was told that it is because Nanshan has a large migrant labor population so the restaurants tend to cater to non-Cantonese palates.

Since arriving at the hospital, we've been ordering out our meals. There is a communal kitchen but the logistics of shopping daily for food and preparing it in an unfamiliar kitchen proved too daunting. We've found that by sticking with Chinese food, our per diem (lunch and dinner for two) amounted to no more than 70 to 80 Yuan (US$10) which is unbelievably inexpensive. Lunch is usually a plate lunch of rice or noodles, meat, and vegetables. This usually costs around 10 to 12 Yuan (US$1.50). Another of our lunch favorites is jook (Chinese porridge or congee) favored with chicken or fish. This is augmented by Deep Fried Devils (Chinese crullers) and a plate of fresh greens seasoned with oyster sauce. Dinner is a bit more elaborate. I usually order the soup of the day, a meat and vegetable dish, a tofu dish, and white rice. Sometimes, we order from the beef noodle place. The meals there come with small side dishes like tea marinated eggs, and preserved bean curd.

For a change of pace, we ordered a pizza from Papa John's last Friday. We usually see 3 to 4 empty Papa John's pizza boxes in the kitchen trash here everyday. So Papa John's is very popular at the Stem Cell Ward. Imagine our surprise when we found that a 14 inch pizza ran 100 Yuan! (US$13) By U.S. standards, the price is not outrageous, but for the locals, the same amount of money will buy a nice dinner for 8 people.

For non-Chinese speaking and reading patients, there are three alternatives in feeding themselves :

1. Shop for food at the local supermarkets and prepare the meals in the communal kitchen.

2. Go out to local restaurants (including the restaurant on the first floor of the hospital) and order from the menu which may or may not be in English. Western fast food outlets like McDonald's and KFC also have a big local presence.

3. Order from Papa John's or the restaurant on the first floor of the hospital and have the food delivered to your room.

I have a bone to pick with regards to the restaurant on the first floor. The first time we tried eating at the place, we had a fairly good experience. The food and service were OK if not memorable. The second time we went there, we sat at the table for half an hour. The staff ignored us, never bringing us even a glass of water or the menu. Needless to say, we left without eating.

Today, the heavens opened up just as we returned from Richard's morning acupuncture and PT session. I decided to give the first floor restaurant another try and ordered some food (a noodle dish for Richard and a club sandwich for me) to be delivered to our room. After an hour and a half, the food failed to appear. Every time I called the restaurant, the line was busy or the call went answered. At this point, I decided to hedge my bet and called my usual Chinese takeout place across the street. This order arrived at our room in under 25 minutes even though it was pouring rain outside.

As we were hungrily shoving down our food, there was a timid knock on the door. It was the delivery from the restaurant on the first floor. The elapsed time was slightly over 2 hours. It was almost 2pm. Our nurse happened to walk by at that moment. She told me to send the food back and not pay for it. Although I felt sorry for the delivery person I complied. Richard is having his stem cells injection by IV this afternoon. Had it been through lumbar puncture, the situation would have been serious as he would not be allowed to eat or drink after 12 noon. It would mean that he has missed his time window for lunch and would not be able to eat again until after 10pm.

The poor weather also caused the plane carrying the stem cells to be diverted from the Shenzhen airport to the nearby Guangzhou airport. Consequently, we were told by Dr. Guo moments ago that the stem cell treatment will not commence until after 8pm. We had planned on going out with another group of patients for dinner at a nice Italian restaurant but it looks like we will have to reschedule for tomorrow night.

Since I'm bilingual, (and love food) I've started to collect takeout menus from local restaurants to translate them into English so that future patients will have a choice of foods during their stay at Nanshan. I'm planning to represent this book of menus to the Beike staff before we leave.

You can run but you can't hide

Thanks to our friend Peter, this weekend edition of the blog is coming to you from 22° 32' 2.26" N (latitude) and 113° 55' 8.67"E (longitude). Check out the Google Earth website if you'd like to see the actual image of the Nanshan Hospital.
http://bbs.keyhole.com/ubb/download.php?Number=628175

Today marks the occasion of Richard's first "field trip" since arriving at Shenzhen. He has been hospital-bound because of his headaches and the rather exhausting daily rehab sessions. We went out with a few other patients to Sea World this afternoon and sat outside Starbucks with our drinks, whiling away the afternoon talking and people watching. Afterwards, we went to a Tex-Mex restaurant to have an early dinner. It was a morale booster for Richard to feel like he's a part of the world again.

As usual, our presence at Sea World attracted a lot of gawking. There were three of us in wheelchairs (Richard, Debbie and Marija), Nick who walked unassisted, his wife Maria, Debbie's friend Sue, and myself. We had a heck of a time getting Richard and Marija to the bathrooms since there were numerous steps even to get into the main area of the restaurant and the facilities were not handicap accessible. But we got plenty of assistance from the restaurant staff and passersby.

When I was growing up in Hong Kong, I did not recall seeing any people in wheelchairs on the streets, shops or restaurants. I just surmised that there weren't any handicapped people living there. The only people who were visibly mobility-challenged were beggars sitting silently on the street corners. People generally ignored them or cast furtive glances their way. The infirm and handicapped were hidden away by their families to lead life as hermits. It was also the same way in China. This practice probably discouraged anyone from advocating for the rights of these individuals. Hong Kong has made great leaps and bounds in the recent years in remedying this situation while China remained the same.

In terms of the attitude towards the handicapped, I'm seeing more understanding and compassion in the majority of the people that we've come across here. When we visited Shanghai and Hangzhou about five years ago, Richard was still mobile but had to use a cane to walk. While visiting Zhou Zhuang, a tourist attraction, we had to cross numerous narrow arched stone bridges. People around us grew impatient because Richard had to walk very slowly on these bridges. They clucked their tongues, cursed, shoved and cut right in front of him making every crossing an ordeal. I cannot see the same thing happening today in Shenzhen although I have a sneaky suspicion that this courtesy is granted more frequently to foreign guests than to Richard who looked like a local.

Now and then, we still catch glimpses of the mistreatment. Yesterday, I went with Kim Poor's friend and fellow Arizonian, Marija, and her family to Lowu Commercial City to do some shopping. The place was even more of a madhouse than usual because it was the weekend. It was wall to wall people. After just a few hours, we beat a hasty retreat. As we reached the head of the taxi queue, I walked ahead to ask the taxi driver to open up the trunk so that I can put Marija's wheelchair in. The driver responded by stepping on the gas and speeding ahead to pick up another passenger at the adjacent queue. This repeated itself four different times.

Meanwhile, I'm standing amidst the gas fumes with Marija sitting flabbergasted in her wheelchair. She was trying to comfort her 4 year old daughter, Sienna, who was on her lap because the youngster was both tired and hungry. Marija's mother, Sonia, was equally exasperated . She had purchased so much stuff that she was lugging a huge suitcase filled with her purchases. When the sixth taxi finally arrived, a man and a woman jumped the queue, cut in front of us and started to open the door of our cab. This prompted spectators to cry "Yu mo gow chor!" ("You've got to be kidding!" in Cantonese) The interlopers quickly withdrew and scurried away from the angry mob. In the mean time, someone got the attention of a policeman who was standing a few yards away. It was his job to see to the orderly loading and unloading of the cabs in this area. He had observed the fiasco with great detachment so far. People started to motion impatiently for the policeman to come over to intercede.

As we hurried over to the cab, several men in our queue volunteered to assist Marija into the cab. One man spoke soothingly to Sienna in broken English to ask her to wait while I helped the cab driver load the wheelchair and suitcase into the trunk. All these good samaritans spoke Cantonese and from their accents, I'm sure they were from Hong Kong. I've never been more proud of my heritage. Richard and I have experienced similiar discrimination and mistreatment by taxi drivers in the U.S. Therefore, I'm not condemning Chinese cab drivers but all cab drivers who are too apathetic and lazy to do their jobs. I hope that there's a special place for them in hell.

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Dear Diary

No headaches but a little tired. It's the upper body sort of tired when you exercise more than usual. I am now awaiting stem cells via IV next Monday afternoon.

The construction noise wasn't too loud this morning. It is mostly traffic sounds. At its peak, the construction noise sounds like an angry Godzilla seeking its missing child. Godzilla came back Saturday afternoon and is now calling.

PT was very quiet today. Big Dr. Lee took advantage that most patients chose to pass on PT today (Saturday). Instead I only went for acupuncture.

I had an interesting encounter at OT Friday afternoon. I was wearing a T-shirt that had the Maxwell's Equations and the phrase "and there was light" on it. For the unfamiliar, Maxwell's Equations describe electricity and magnetism in four very concise but mathematically sophisticated equations.

[ I promptly forgot these equations after finishing the final exam for the classes! ]

Back to OT ... I was sitting across from an elderly gentleman in his 70's (?) receiving some treatment. He noticed the writing on my T-shirt and asked Lily, "Is your husband a mathematician? I used to be a chemistry professor and recognized many of the same symbols." It is odd how certain concepts transcend languages.

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