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.