May 26, 2009 Update

Here is the latest update since returning from China a little over a month ago:

Changes: None that are all that noticeable. Although I have not fallen as often as I did before I left for treatment. This could be due to my exercising.

CK Level: I received my new blood test results today and learned that my CK level, which was at 74 when I left China, is now at 192. I had not exercised for 48 hours before taking the test, so I am a bit disconcerted with this news, but not defeated and will continue with my physical therapy program.




Walking: Here is a walking video I took around May 17. No real changes that I can feel or see.

Standing: It feels like I am able to stand up slightly faster than pre-treatment.

Muscle Mass Measurements: No changes.

Energy: Seems slightly improved.



Equipment: Here are photos of my workout table and Standing Frame, which I built with the help of friends. I have been using the table for about a week now for stretching and physical therapy techniques taught to me in China. I have not used the standing frame because I am still working out how to make a strap that can be easily attached.

Daily Program: Each day I stretch and do a few PT exercises for about 20 minutes, then ride my exercise bike for 30-45 minutes. I started on my bike at Level 2; now I am up to Level 4. Once I get the standing frame worked out, I'll add 30 minutes/day with that as well.

Physical Therapy: I will be starting PT with a professional later this week. It's been difficult to find one that feels they are "MD qualified" and that my insurance will cover.

Overall, I feel good, but know I still have a very long way to go before any determination whether stem cell treatment works for me can be made. If this is working, it's simply going to take time to rebuild muscle, and I need to be patient and diligent in order to get to that point.

I'll keep posting updates when I have them or at least every 3-4 weeks.

Dos and Don'ts of Stem Cell Treatment

I thought I'd jot down a few things that might be helpful in preparing for and returning from, stem cell treatment that I learned before, during and after my treatment.

Before, During and After Treatment:
Do not - Smoke (anything)
Do not - Consume alcohol
Do - Get a check up and blood test from your doctor so you have a "base" starting point prior to treatment - especially ask for a CK blood test (for muscular dystrophy patients, mainly)
Do - Drink lots and lots of water. Baby stem cells prefer a well-hydrated body.
Do - Be prepared to exercise daily after treatment

30 Days Before Treatment:
Do not - Make a change in your prescriptions (if you can help it) or supplements.

I was told I should get a "heavy metals" blood test before I went. I did so (results were normal), but my insurance did not pay for the test and it was very expensive. Unless you really think it necessary or your insurance covers it, I suggest passing on this sort of test.

After Treatment:
Be prepared for physical and occupational therapy when you return. Let your doctor know (if you have insurance to cover this) that you will need a "doctor's order" for PT and OT.
Be prepared to purchase exercise equipment when you return. I needed a stationary exercise bike, a muscle stimulator machine, a standing frame and an over-sized work out bench (5 ft. wide by 6 ft. long).
The exercise bike can be easily found and fairly inexpensive. The standing frame is expensive to purchase so I am building one using items I can find at my local home improvement store. The work out bench is hard to find due to its size, so I am building that too. Most of the materials can be found at a hardware store, but I had to order the vinyl covering from an upholstery speciality store. The muscle stimulator machine will obviously need to be purchased, but I want to talk with my PT first.

I'll add more thoughts as they come to me.