Wednesday, March 24, 2010

The Readers Are Restless

Since I am getting more and more emails, I guess its time to post an update. I'm re-using the response I sent last night to an inquiry:

Hello, K*****

I went through Beike's program between March and April, 2009. I enjoyed my experience, and found them to be very involved in my care and well being. I even came to know many staff members on a personal level and was invited to a wedding! Nearly everyone spoke some kind of English.
You are assigned a team of doctors and staffers with a primary. The team includes physical therapy and occupational therapy, nurses, interns and assistants whose only job is to translate in perfect English for you to better understand what they are doing to you. You are first assessed for PT, then a specific plan that fits your abilities is developed and maintained 5 days a week.

Follow up is crucial for them, so if you go they will want to keep in touch. Just very polite, professional, pleasant, friendly people - once you get over the culture shock of seeing so many people!

Before China I could not exercise more than about 20 minutes before becoming totally exhausted. When I returned from China, I was able to exercise 1-2 hours, 5 days a week. I began seeing a PT locally who is helping me to workout safely. I'm doing stretching and arm exercises, stationary bike riding, situps and tons of glutes work to strengthen my "core" so I can stand better. I gained 3 inches of mass in my thighs, which my PT has documented.

Today, however, the results I've gained seem to have leveled off, and I have not gained - or lost - anything in the past three months. I continue to see my PT and exercise, but must admit it seems a little more difficult to maintain the 5 day weeks with it.

Please understand stem cell treatment is not a cure; only a treatment. I knew this going into it, and Beike was pretty clear in its literature about no guarantees. But I could not find another English speaking person with FSH muscular dystrophy who had done the treatment, so I decided to investigate the best I could and be the test-subject!

Was it worth it? Probably not completely, but I had the means so I went for it. Besides, I would never really know if it worked unless I tried it for myself. Its really harmless - no spinal injections, just a lot of site injections directly into the muscle groups. For me, there were 160 injections. I was asleep the entire time, and only slightly felt the injections when I awoke. I also received the stem cells through an IV in my hand.

Everybody will have a different result to the treatment, so please don't base your daughter's future on my results. The younger you are the better the results, I've read. It also depends on what type of MD she has, how early was the onset, the level of the severity, race, etc. These are questions for Beike. If she can walk at all and exercise, she might do okay. The issue might be keeping her exercising.

Anyway, I hope this helps.



  1. Hi Russ,
    Thanks for your update, I was willing to hear something from you and nearly everyday I was opening your blog.
    I am glad to know you are okay, even if your progress seemed to stop, you keep on exercising and you have not lost muscular mass. That's very good news.
    Very best regards

  2. hi russ sir you know how much i admire you and always admire you.
    your younger brother
    satvinder singh

  3. Hi Russ, I have Limb Girdle MD, am a 55 yr old female with no family history. My son has C.P. from brain injury at birth, so have been looking into stem cell treatments. Reading your blog was very helpful. I did a google search for MD and stem cells and found it. We are looking into Excell a German clinic that is less expensive. I had breast cancer last year, so they say they won't treat me for 5 yrs in case the stem cells stimulated cancer growth. Anyway, we are now focusing on my son and his seizure disorder.
    The most helpful things I have found for my muscle condition is using a whole body vibration machine and MME. WBV gives an hours exercise in 10 minutes w/o stress or strain. Check it out if your not familiar with a web search. The other more important one is Magnetic Molecular Energizer invented by Dr. Dean Bonlie in Calgary. It's based on the MRI and stimulates fast cell growth and increases stem cell production in the brain. You lay under a 5 ton magnet 15 hrs a day for 10-15 days at a time. I do this a couple of times a year. It could be a good follow up to stem cell therapy because it energizes the tissue. It is less expensive but more ongoing. About $5-7,000 a pop. I am the only M.D. patient that I know who has seriously used it over several years. I am also the only patient my neurologist has seen improve over the years. I was diagnosed 25 yrs ago and am still fully functional. If you want to check it out Let me know if you have any advice or want more input on what I've done. Dr. Bonlie can give you my contact info.
    Our prayers are with you!
    BTW... I was born in Portland and have many relatives there.

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