Thursday, April 30, 2009

May 1: Post-Treatment - Message #1

I returned from Beike Bio-tech's stem cell treatment in Hangzhou, China 10 days ago (April 21). I took three days off from exercising to get over my jet lag, meet with friends and family, deal with some business matters surrounding my brother's death on March 15, and to assemble my new stationary exercise bike. On Saturday, April 25, I got starting on my bike riding, and have done so daily for 30 minutes.

I also began using my power recliner to do abdominal work. I lower the back of the chair and keep the foot rest nearly all the way down with a large rubber band wrapped around it and my legs to keep them from lifting up. Then I bend way forward then way back. I keep lowering the back of the chair until I can just barely do the sit-up and continue that for about 15 minutes. Then I stretch my legs and arms for 15minutes.

I am building a standing frame this weekend to stretch the back of my legs and work on posture (photos/video later). I will do this 30 minutes a day. I’m also building a good-sized work-out table. I will also start physical and occupational therapy in the next 7-10 days, but don’t know yet what all that will entail.

As of this post, I have not noticed any significant changes in either strength or endurance, but I know it will take time to rebuild muscle.

I returned to work on April 27, so my schedule is: up at 6:00 AM; return home at 6:00 PM; change, stretch for a few minutes, ride the bike for 30 minutes, sit-ups for 15 minutes then stretch for 15 minutes. I will be adding a TENS machine routine to this mix soon which will include 20 minutes of tricepts and foreamrs work, then 20 minutes of thigh work.

I will be doing a new walking and standing video in the next few days and post them here for your ongoing reference as to my progress - if any. After that, I will likely do them every 2 or 3 weeks.

Diet: I try to stick to a low-carb diet because I have Type II Diabetes. Mostly, meat and veggies with a little bit of diary and fresh fruit, but a few chips and a burger now and again seem to keep me going!

I’ve been told by my local MD expert, as well as the doctors at Beike, to begin Creatine powder supplement (5 g/day). I have not yet, but will be soon.

As always, please feel free to email me with your questions or post them here, as I check the blog often.

Thursday, April 23, 2009

April 23: Back Home

After a 25 hour trip, Jason and I returned to Oregon from our five week trip to Hangzhou, China on April 21. While we were having our first real US meal on a layover in San Francisco, we saw Dustin Hoffmann walk by in front of us!

Anyway, it's nice to be home. Thank you Beike Bio-tech for all your wonderful care and treatment!

Now it's time to get to work and continue my physical therapy. I'll keep you all updated with my work, as well as my doctor visits.

Thank you everyone for your support. Please feel free to email me if you have any questions at

Sunday, April 19, 2009

April 19: CK Level Drops to 74!!!

Excellent News! This morning the nurses took a few vials of my blood to check my levels. I learned this afternoon that everything was "normal." I then asked specifically about my CK level. CK is short of Creatine Kinase which is a type of protein called an enzyme. It catalyzes or "encourages" a biochemical reaction to occur. The normal function of CK in our cells is to add a phosphate group to creatine, turning it into the high-energy molecule phosphocreatine which is burned as a quick source of energy by our cells.

During the process of muscle degeneration, as in FSH muscular dystrophy patients, muscle cells break open and find their way into the blood stream. Because most of the CK in the body normally exists in muscle, a rise in the amount of CK in the blood indicates that muscle damage has occurred or is occurring. In healthy adults, the CK levels can vary depending on gender, race and activity, but normal range is 22 to 198.

Arguably, CK is not a definitive measure of the progression of any muscular disorder, but in my case I have monitored it for the past 10+ years based on my doctor's tests. Below is a chart of those numbers. When I arrived in China in mid-March for my treatment, my CK was 188, a drop from 209 in November of '08. Now it's at 74 which may indicate the progression of my disease has slowed down or stopped altogether!

Friday, April 17, 2009

April 17: Final Intramuscular Injections

This afternoon was my final round of intramuscular injections using two bags of umbilical cord stem cells. I received 40 injections into the front and back of my legs; 24 in my thighs and 16 in my calves. Altogether, eight bags of stem cells have now been used, along with one bone marrow treatment using my own stem cells, cultivated with a specialized growth factor. Now the real work begins with daily exercise and physical threapy in order to build new muscle over the next several months. So bring it on!

Monday, April 13, 2009

April 13: Two for the Road, Please

Today was my 6th IV injection of stem cells. All went smooth as usual, and I now feel like an old hand (no IV pun intended!) at this.

Since I'm now done with my original treatment and we still have eight days before we leave China, I have decided to go through another round of intramuscular site injections using two additional bags of stem cells. I feel there was a near immediate benefit from this treatment - I was able to crank the exercise bike up from zero resistance to #3 within three days after the first set of injections, so I feel confident something is working.

The main side effect I've noticed is "twitchy" legs, especially my left side, but recently my right side (weaker side) has begun vibrating too. It's like a dam has been opened and water is beginning to pour through the right side of my body. It keeps me up late at night, but it's actually a good thing - like muscles are wakening up.

Maybe I'm just masochistic! I have now calculated I have been poked 400 times since I've been here just in acupuncture (16 needles/day x four days/week); another 8 times for all IVs and initial blood tests; 1 for the bone marrow; and 60 for the first intramuscular injections (=469 times). Only another 125 pokes to go to complete this treatment!

Wednesday, April 8, 2009

Poll: See Anything Different?

So here's a poll for everyone. Please review these two 30 second (approx.) videos, and let me know if anything looks different to you in my walking. The first one was taken March 10 before I left for China; the second was taken today, April 9. From my perspective, I can't really tell that much, so let me know your honest opinion. Thanks.

Human Pincushion Returns!

My 60 site injections took place at 3:30 this afternoon, and I was back in my room by 4:30. I was rolled down to the operating room, turned on my right side then stripped of my operating gown. They shaved my thighs, back and upper arms yesterday so I was prepared for today. After they ensured I was comfortable, anesthesia was injected into my IV and I quickly fell asleep. Next thing I recall was waking up back in my room, saying "tong" the Chinese word for pain.

My arms were fine, but it felt like a thousand bees had stung me across my shoulder blades and both thighs, and the fire of those stings could not be subdued. They nurse immediately injected Valium into my IV, and I quickly drifted off to sleep for three hours. When I awoke, the pain was completely gone! So although it sounded painful, in the end all is well. In fact, I'd do it again!

No immediate "Incredible Hulk" muscle reactions or side affects seemed to have occurred from this procedure. Physical therapy and acupuncture are cancelled for tomorrow, but I'm back to No Mercy James on Friday, along with beginning occupational therapy for my upper arms and shoulders. I continue to bicycle 20 minutes a day whenever possible, although it is not a required part of my therapy.

I cannot emphasize enough how caring and professional the Beike staff is here. They are extremely punctual for everything, and constantly concerned for your comfort and ensuring your questions are answered. Most everyone speaks some amount of English, so communication is never a problem. I am definitley in good hands!

Monday, April 6, 2009

April 8 Site Injections

Here is a diagram of the sites where stem cells will be injected into my different muscle groups on Wednesday of this week. There are 60 in all, and two bags of of stem cells will be used. Fortunately, I'll be under anesthesia for this procedure so it should not be at all painful. I am told the following morning I will be able to participate in my normal physical therapy. Although I've seen some slight increase in strength, I understand in muscular dystrophy patients, the stem cells need time to replicate themselves, as well as continued therapy in order to see real results. So I don't expect to see any "incredible" changes by the time I leave here - but I will know that new building blocks have been put in place and it's up to me to develop them.

He Fang Market Place

Last Sunday Jason and I venturedto He Fang ("Hey-Fong") market place, an area near West Lake, on the west side of Hangzhou, about a 30 minute drive from our hospital. He Fang is a combination of open-air kiosks and strip mall-style shops, about four blocks in length. We happened to hit it during Qingming ("Ching-ming") holiday (aka tomb sweeping days), a three day Memorial day around here.

Jason and I had been planning this trip since we first got here and read about it. Mainly becasue Jason learned they sold swords here and has been drooling about it ever since. So in the interest of a dry floor, we grabbed our favorite driver and negoiator, Jack, and took off. The side shops were way off the ground and not accessible much to me, but wow, were we impressed! Lots of nick-nacks, trinkets and seriously authentic Chinese goods everywhere. It took us two and a half hours to take it all in, with a good deal of that time spent in the sword shop, which Jason learned had been there since 1830, and I swear the proprietor was just as old! I'll not go into what all we purchased because so much of it is a surprise, but we really loaded up thanks to "Cutthroat Jack." The man has amazing negoiator skills, and got everything we wanted for at least half off.

We then returned to Silk Street and cleaned it up good with Jack's help.

Wednesday, April 1, 2009

Who Ordered the Massage?

So I'm minding my own business yesterday about 5:00 pm, just hanging out in my room listening to the pod and reading. The day before I had taken a fall in the hallway after physical therapy when Jason and I were on the way to do some bicycling. I was not wearing my braces and my left foot turned inward and down I went smacking my right shoulder and elbow on the heard floor. Since I've taken more falls than Evil Knievel I know how to fall without kissing the floor in the process, so all was well with the 'ol brain bucket. I did, however, have a smarting shoulder.
Anyway, in walks our translator with some woman I'd never seen and says "the massage you ordered is here." "I didn't order a massage," I said. I then asked Jason, who said it wasn't him. We now believe it was someone from the hospital who ordered for me - likely Luca, a patient rep from Italy we met the other day - real nice guy. So I received a full body massage - No Laurie, my clothes stayed on the entire time! It took about an hour and I don't believe she knew more than the word"OK?" in English, but let me tell ya, I felt soooo much better afterwards! I understand this type of massage costs about $300 RMB ($45 US). So thanks, Luca. I owe ya one!