To answer some questions from my last post, yes, I would return to China for more treatment if I could afford it. However, I spent about $50,000 - when all was said and done - for my treatment, and will not be in a position to do that again for a number of years unless I try fundraising.
For more information about the stem cell treatment I had through Bieke Biotech, check out their site at: http://www.beikebiotech.com/
Wednesday, January 13, 2010
Tuesday, January 12, 2010
12 January, 2010
It has been just over 8 months since I returned from Hangzhou, China. I have been exercising 1-2 hours per day, five days/week since then. While my initial results were great, it seems they have leveled off and I am now losing ground. I am falling more frequently, and getting out of a chair, which was always difficult, seems to have become even more difficult. It appears my treatment only went so far for so long.
I will continue to exercise because it helps me to feel like I am doing something to deal with my muscular dystrophy. And I will continue to post here for the next 3-6 months, just in case there are changes to report.
Meanwhile, I remain supportive of stem cell treatment generally, and Beike Biotech, the company I went through for the treatment, specifically. Perhaps some day new techniques will be found to make this treatment work better for MD patients.
Thank you all for your support and kind words.
I will continue to exercise because it helps me to feel like I am doing something to deal with my muscular dystrophy. And I will continue to post here for the next 3-6 months, just in case there are changes to report.
Meanwhile, I remain supportive of stem cell treatment generally, and Beike Biotech, the company I went through for the treatment, specifically. Perhaps some day new techniques will be found to make this treatment work better for MD patients.
Thank you all for your support and kind words.
Tuesday, December 1, 2009
Good Days and Bad Days
1, December 2009 - For a bit over seven months the exercise has continued. Most days my strength seems improved and walking easier, but then there are the days I am reminded that muscular dystrophy still controls my every movement by sending me on a trip to the floor.
November was full of these little reminders; more than I have seen since returning from China. Except a few aches and pains and a couple of dents in the 'ol ego, I landed in one piece. 'I'm getting too old for this sh**' I cuss to the empty room, wondering at the same time if all my work is for naught while I'm sliding across the floor on my butt towards my lifting machine.
'Does stem cell treatment work'? I am asked this almost daily and still cannot definitively answer the question. "For me, it does," is my usual response. The combined treatment and expense provide me with the motivational fuel needed to exercise often so I can get the most out of the experience, but when falls happen I find myself questioning things.
However, as I think through it all I try to remember that stem cell treatment was never meant to be a cure. I've got decades of damaged muscles to repair - which ain't gonna happen in a mere handful of months! As long as I'm walking, falls are going to happen - stem cells or not -that's just a part of MD that I expect will never completely go away. So I'll keep up the work, keep reporting the good and the bad and, most of all, keep the faith.
November was full of these little reminders; more than I have seen since returning from China. Except a few aches and pains and a couple of dents in the 'ol ego, I landed in one piece. 'I'm getting too old for this sh**' I cuss to the empty room, wondering at the same time if all my work is for naught while I'm sliding across the floor on my butt towards my lifting machine.
'Does stem cell treatment work'? I am asked this almost daily and still cannot definitively answer the question. "For me, it does," is my usual response. The combined treatment and expense provide me with the motivational fuel needed to exercise often so I can get the most out of the experience, but when falls happen I find myself questioning things.
However, as I think through it all I try to remember that stem cell treatment was never meant to be a cure. I've got decades of damaged muscles to repair - which ain't gonna happen in a mere handful of months! As long as I'm walking, falls are going to happen - stem cells or not -that's just a part of MD that I expect will never completely go away. So I'll keep up the work, keep reporting the good and the bad and, most of all, keep the faith.
Thursday, November 5, 2009
New CPK Results
A new blood test last week shows my CPK level has dropped from 316 in August to 137! This time I did not exercise at all three days prior to testing. I wanted a "resting" cpk number, and think my higher level in August was due to having exercised less than 48 hours before testing.
My routine remains mostly the same. I exercise 5-6 times a week for 1-2 hours each time. Exercises include stretching, glute exercises, sit ups, arm work and "clam shells" leg exercises. I then ride my exercycle 30-40 minutes at level 5, warming up first at level 4 for about five minutes. I still see my physical therapist once a week, usually to work on upper body strength at this point.
Standing remains a problem, and I recently pulled something in my side near a kidney, making standing a bit painful. My PT thinks we can work on something that will help, so I am looking forward to that later this week.
Overall, I still believe I am seeing improvements. Maybe nothing "earth-shattering" to many, but from where I've been sitting (or falling!) for many years the improvements are significant. My energy is way up; I'm exercising without pain or discomfort for an extended period of time without becoming exhausted; I fall far less often than I did before s/c treatment and I've seen an increase in the mass of my legs.
My routine remains mostly the same. I exercise 5-6 times a week for 1-2 hours each time. Exercises include stretching, glute exercises, sit ups, arm work and "clam shells" leg exercises. I then ride my exercycle 30-40 minutes at level 5, warming up first at level 4 for about five minutes. I still see my physical therapist once a week, usually to work on upper body strength at this point.
Standing remains a problem, and I recently pulled something in my side near a kidney, making standing a bit painful. My PT thinks we can work on something that will help, so I am looking forward to that later this week.
Overall, I still believe I am seeing improvements. Maybe nothing "earth-shattering" to many, but from where I've been sitting (or falling!) for many years the improvements are significant. My energy is way up; I'm exercising without pain or discomfort for an extended period of time without becoming exhausted; I fall far less often than I did before s/c treatment and I've seen an increase in the mass of my legs.
Saturday, October 24, 2009
25 October, 2009
Three days ago marked my 6 month return from China so I thought I put up some before-and-after walking videos. The first video was taken March 9, 2009 (about two weeks before I left for s/c treatment); the lower video was shot October 24, 2009. The terrain is a bit steeper in the newer video.
I feel good. I'm working out 5-6 days a week for 1 1/2 to 2 hours. Lots of stretching, situps, glute work and bicycling. I'm at level 5 (of 8) on the stationary bike for 30-40 minutes, and make sure to make a point of riding the bike every time I exercise. I continue to see my physical therapist once a week. Standing remains a difficulty.
Some people have asked about my upper body strength. That has improved about 10% according to my PT. I really haven't noticed it that much because I have not been concentrating my efforts there. The main focus of my exercise has been lower body - - just trying to keep myself upright and walking. My PT works my arms and shoulders each week, but I do little of that at home. I'll try to start doing a better job of that in the future.
Monday, October 5, 2009
New Baseline
It has been brought to my attention that if I’m going to post "results" concerning my treatment in any way, shape or form, they must be done so under strict and consistent guidelines in order to maintain the integrity of the measurements and any change that may or may not occur.
These same critics also seem to think that people could make their decision to spend thousands of dollars on stem cell treatment based solely on what I have to say on this blog.
First off, this is my blog - albeit open to the public - it is still a personal forum and I will post whatever I wish until some authority pulls it.
Secondly, I state on the front of my blog under my photo that these are MY results, and may not be yours. See Disclaimer....
Thirdly, anyone relying solely on my results who spends their life savings on stem cell treatment has not read this blog very well at all, nor have they done their research or completed their due diligence.
That being said, I do agree that there is a need for accuracy and consistency in my measurements so I have enlisted the help of my physical therapist. He will measure 4 inches up from the top of my knees, make a mark, then measure the circumference of each leg at that mark. For my arms, he will measure a certain distance up from each elbow, make a mark and measure the circumference.
Here are the photographs from his measurements on October 2, 2009. I will consider this my new "official baseline."
4" up from knee
Right Leg - 14.5"
Left Leg 14.0"
So get over yourself people. I have never held myself out to be any sort of doctor or scientific researcher. I’m just trying to give others the benefit of my personal experience - this ain’t no scientific theists!
These same critics also seem to think that people could make their decision to spend thousands of dollars on stem cell treatment based solely on what I have to say on this blog.
First off, this is my blog - albeit open to the public - it is still a personal forum and I will post whatever I wish until some authority pulls it.
Secondly, I state on the front of my blog under my photo that these are MY results, and may not be yours. See Disclaimer....
Thirdly, anyone relying solely on my results who spends their life savings on stem cell treatment has not read this blog very well at all, nor have they done their research or completed their due diligence.
That being said, I do agree that there is a need for accuracy and consistency in my measurements so I have enlisted the help of my physical therapist. He will measure 4 inches up from the top of my knees, make a mark, then measure the circumference of each leg at that mark. For my arms, he will measure a certain distance up from each elbow, make a mark and measure the circumference.
Here are the photographs from his measurements on October 2, 2009. I will consider this my new "official baseline."
4" up from knee
Right Leg - 14.5"
Left Leg 14.0"
So get over yourself people. I have never held myself out to be any sort of doctor or scientific researcher. I’m just trying to give others the benefit of my personal experience - this ain’t no scientific theists!
Tuesday, September 22, 2009
5 Month Post-Treatment Update (Sept. 22, 2009)
BIG CHANGES!
Four days after I arrived in China (19 April, '09) I had Jason snap some photos of the quadricep area of my legs (we took other photos as well, but this post is about my legs). Last night I took new photos, just curious whether exercising my brains out for the past five months has done anything. Man, was I surprised! As (hopefully) can be seen by the photos below, I have gained back 3.25" of muscle mass in each leg!
RIGHT LEG - 19 April, 2009
RIGHT LEG - 21, September, 2009
LEFT LEG - 19 April, 2009
LEFT LEG - 21 September, 2009
I believe a lot of this growth is due to my stem cell treatment. The treatment has given me the strength to exercise often and more vigorously, making it possible to use my exercycle nearly everyday for 30-45 minutes at a time.
Overall, I feel I am walking a bit stronger, but still struggle with standing up.
I am really working on strengthening my "core," and have added 80-100 sit ups to my workout routine. I use my large workout table with a long utility strap wrapped around it with a tightening device. Sitting upright on the table, I put the strap over my legs, just behind my knees, and tighten it so my legs don't bend. Then I use a sturdy, foam pillow propped at a 45 degree angle and bend forward and back. Of course, the "glute" work is a big part of the core, so I do those exercises 4-5 times a week. Still see my PT once a week. I'll keep you posted.
Four days after I arrived in China (19 April, '09) I had Jason snap some photos of the quadricep area of my legs (we took other photos as well, but this post is about my legs). Last night I took new photos, just curious whether exercising my brains out for the past five months has done anything. Man, was I surprised! As (hopefully) can be seen by the photos below, I have gained back 3.25" of muscle mass in each leg!
RIGHT LEG - 19 April, 2009
RIGHT LEG - 21, September, 2009
LEFT LEG - 19 April, 2009
LEFT LEG - 21 September, 2009
I believe a lot of this growth is due to my stem cell treatment. The treatment has given me the strength to exercise often and more vigorously, making it possible to use my exercycle nearly everyday for 30-45 minutes at a time.
Overall, I feel I am walking a bit stronger, but still struggle with standing up.
I am really working on strengthening my "core," and have added 80-100 sit ups to my workout routine. I use my large workout table with a long utility strap wrapped around it with a tightening device. Sitting upright on the table, I put the strap over my legs, just behind my knees, and tighten it so my legs don't bend. Then I use a sturdy, foam pillow propped at a 45 degree angle and bend forward and back. Of course, the "glute" work is a big part of the core, so I do those exercises 4-5 times a week. Still see my PT once a week. I'll keep you posted.
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