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.
Tuesday, December 1, 2009
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.
Sunday, August 30, 2009
August 31 - CK Level On The Rise
Over this past week I had two separate CK tests from two separate labs taken. On August 20 my CK level was 260; On August 27 it was 316. Both of these numbers are a significant rise from the 74 I saw just before leaving China just over four months ago. The Aug. 27 number may be a bit off due to having exercised the day before the test. Still, the numbers are higher than I would like. What's odd, is I have slightly increased my exercycle from level 4 to level 5 (out of 8 levels). For now, I only do about 10 minutes at that level, but the increase is there.
Otherwise, I have noticed no significant changes and have maintained the exercise endurance and walking stability I seemed to have acquired from the China treatment.
Otherwise, I have noticed no significant changes and have maintained the exercise endurance and walking stability I seemed to have acquired from the China treatment.
Monday, August 17, 2009
August 17, 2009 - Nearly 4 Months Post-Treatment
Later this week will mark four months since my return from China, so here's an update:
No major changes. I still have not fallen while walking normally since returning from China. I have had a some falls but all of them are related to having tripped or stepped on something unexpectedly. My last fall was in my home about 10 days ago. I tried like hell to get up on my own for over an hour, but eventually had to ask my girlfriend Laurie, for assistance. However, Laurie recently had to move to a city about 3 hours away to take care of her grandmother. Since I had such a hard time getting up on my own the other day I bought an electric Hoyer lift for those times I expect I will fall and nobody will be around. So standing obviously remains a problem.
I still exercise daily for about an hour and a half. I am unable to strap myself into the Standing Frame, so I am no longer spending a half-hour doing that exercise.
Physical Therapy continues once a week. Last week I learned how to get up from a fall in my home using my coffee table. I had been doing it all wrong and this is why I was unable to get off the floor the other day.
Overall, I'm still not sure whether stem cell treatment has helped. With the exception of not falling while walking, I have not seen any "spectacular" results. I'll need another two months work and test or two before I can say one way or the other.
I'll keep you all posted.
No major changes. I still have not fallen while walking normally since returning from China. I have had a some falls but all of them are related to having tripped or stepped on something unexpectedly. My last fall was in my home about 10 days ago. I tried like hell to get up on my own for over an hour, but eventually had to ask my girlfriend Laurie, for assistance. However, Laurie recently had to move to a city about 3 hours away to take care of her grandmother. Since I had such a hard time getting up on my own the other day I bought an electric Hoyer lift for those times I expect I will fall and nobody will be around. So standing obviously remains a problem.
I still exercise daily for about an hour and a half. I am unable to strap myself into the Standing Frame, so I am no longer spending a half-hour doing that exercise.
Physical Therapy continues once a week. Last week I learned how to get up from a fall in my home using my coffee table. I had been doing it all wrong and this is why I was unable to get off the floor the other day.
Overall, I'm still not sure whether stem cell treatment has helped. With the exception of not falling while walking, I have not seen any "spectacular" results. I'll need another two months work and test or two before I can say one way or the other.
I'll keep you all posted.
Tuesday, July 14, 2009
July 14, 2009 - The Vimeo Video
The day before I left Hangzhou, China, the Beike Biotech staff took a patient-experience video of me. I learned just today it was posted on their Stem Cells China News site (http://www.stemcellschina.com/) some two weeks ago.
I recall it was an emotional day when the video was shot. I had just learned the good news that my CK level had dropped from 188 to 74 and, although it was a pleasant experience, I was looking forward to returning home after five weeks in a foreign country. I look terrible in the video, but I really felt great! Thank you all for your continued support.
Here is the link: http://vimeo.com/5369780
I recall it was an emotional day when the video was shot. I had just learned the good news that my CK level had dropped from 188 to 74 and, although it was a pleasant experience, I was looking forward to returning home after five weeks in a foreign country. I look terrible in the video, but I really felt great! Thank you all for your continued support.
Here is the link: http://vimeo.com/5369780
Monday, June 29, 2009
June 29, 2009
It's been a couple of weeks since my last post, and I know folks like updates so here's one for ya. My exercise routine can now easily cover 2 hours a day. I don't always do that much because frankly, after a day's work, I'm a bit spent. But a typical night will include:
Standing Frame: 30 minutes
Stretching and PT exercises: 30 minutes - 1 hour. The physical therapy work includes a lot of what is called "core" exercises, utilizing movements that work my glutes, hamstrings and abdominal muscles. I still see my PT once a week for about an hour
Exercycle: 30-45 minutes (currently on level 4 out of 8).
EMS: 30 minutes (Electrical Muscle Stimulator).
Results: Walking without falling has been my most impressive result so far. It was not uncommon for me to fall 1-2 times a week simply walking along - even while wearing my AFO's.
I suppose the ability to workout at all has also been a vast improvement. For 8 years prior to stem cell treatment, I never exercised, thinking 'why bother, the muscle is dead so what's the use'? Now I feel that my work is actually beginning to payoff. I am still careful not to over-work the muscles, however, and don't allow myself to reach exhaustion when exercising.
I'll keep you posted.
Russ
Standing Frame: 30 minutes
Stretching and PT exercises: 30 minutes - 1 hour. The physical therapy work includes a lot of what is called "core" exercises, utilizing movements that work my glutes, hamstrings and abdominal muscles. I still see my PT once a week for about an hour
Exercycle: 30-45 minutes (currently on level 4 out of 8).
EMS: 30 minutes (Electrical Muscle Stimulator).
Results: Walking without falling has been my most impressive result so far. It was not uncommon for me to fall 1-2 times a week simply walking along - even while wearing my AFO's.
I suppose the ability to workout at all has also been a vast improvement. For 8 years prior to stem cell treatment, I never exercised, thinking 'why bother, the muscle is dead so what's the use'? Now I feel that my work is actually beginning to payoff. I am still careful not to over-work the muscles, however, and don't allow myself to reach exhaustion when exercising.
I'll keep you posted.
Russ
Sunday, June 14, 2009
June 13, 2009
Here's a new video of me walking earlier today (on top), and one from May (below). I'm not seeing much difference, but you tell me.
Otherwise, I still feel good and have the energy, most days, to get an hour or more exercise in. Standing is still difficult - not much change there so no videos just yet. I'll keep posting good or bad.
Russ
Wednesday, June 10, 2009
June 10, 2009
Just wanted to post a couple of new photos of my standing frame today.
Otherwise, the most recent update is that I have had a handful of physical therapy treatments which are going very well. We are focusing on my hips, glutes and stretching.
I am also happy to report that I continue to fall less often and walking is becoming slightly easier. Standing is still an effort, however. I will do standing and walking videos later this week and get them on here by June 15 for your review.
Thanks for your continuing support and all your emails!
Tuesday, May 26, 2009
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.
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.
Tuesday, May 5, 2009
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.
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.
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. russkleve@verizon.net
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. russkleve@verizon.net
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 russkleve@verizon.net
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 russkleve@verizon.net
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!
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!
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.
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!
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!
Monday, March 30, 2009
Jason's Blog
Here is a link to Jason's blog while we are here in China. I think you'll enjoy his prospective and his writing abilities. "Thank you" is simply not enough appreciation for this young man's commitment and help while I've been here. Jason has also been helpful to the other patients and staff members who know him by name within a minute of meeting him. Thanks Dude! ajasoninchina.blogspot.com
March 30 - Treatment No. 3
I've been under the weather with a slight cold accompanied with a sore throat for the past four days now. This is not the best circumstances for baby stem cells to develop so they've had me on traditional Chinese medicines which includes a small vile of some pretty "vile" tasting liquid four times a day, as well as some sort of pills. I have no idea what's in either of these products, but they seem to be helping. Jason was able to round up some vitamin C so I've added that to the mix too.
Today I was given my third bag of stem cells via IV. On Friday they will return my cultivated bone marrow via IV. Then next Wednesday, I'll be put under general anesthesia and given two bags of stem cells via site injections into my thighs, calfs, forearms and biceps. This will complete all the transfusions I've signed up for. After that its workout, workout, workout. I expect to increase my physical therapy from two to three hours a day.
Results: So far not much at all, except maybe a slightly faster walking gait. But I've only just now had my third (of six) treatment, and it's way too soon to tell. One of the Americans who works here told me muscle damage takes longer than other types of treatment to see results because you have to work and develop the muscles. But the new building blocks will be in place by the time I leave here, so the rest will be up to me. Cool! Bring it on!!
Today I was given my third bag of stem cells via IV. On Friday they will return my cultivated bone marrow via IV. Then next Wednesday, I'll be put under general anesthesia and given two bags of stem cells via site injections into my thighs, calfs, forearms and biceps. This will complete all the transfusions I've signed up for. After that its workout, workout, workout. I expect to increase my physical therapy from two to three hours a day.
Results: So far not much at all, except maybe a slightly faster walking gait. But I've only just now had my third (of six) treatment, and it's way too soon to tell. One of the Americans who works here told me muscle damage takes longer than other types of treatment to see results because you have to work and develop the muscles. But the new building blocks will be in place by the time I leave here, so the rest will be up to me. Cool! Bring it on!!
Friday, March 27, 2009
March 28 Physical Therapy
Here are some shots of me doing physical therapy. I do this five days a week for about two hours. On my days off, or when my legs feel tight, I also use an stationary bike for about 20 minutes.
Arm and shoulder cuff stretches. This right side (weaker and more atrophied side) workout hurts like hell!
Boxing exercise.
Hip lifts. "No Mercy" James makes me do 20 of these things! I am exhausted by the time I'm through, but I'm doing more than I started with (10).
Leg stretches and leg push.
Walking straight. James is pushing down on my hips as I walk.
Standing apparatus - 30-40 minutes/day.
Arm and shoulder cuff stretches. This right side (weaker and more atrophied side) workout hurts like hell!
Boxing exercise.
Hip lifts. "No Mercy" James makes me do 20 of these things! I am exhausted by the time I'm through, but I'm doing more than I started with (10).
Leg stretches and leg push.
Tuesday, March 24, 2009
March 25, 2009
Bone marrow treatment went much better and easier than I expected. I was a bit "high" when I dictated the following notes to Jason right after I was returned to my room, so my apologoies if they don't quite connect.
For the bone marrow treatment I was shaved and prepped, then wheeled down to the third floor. I was then wheeled into an operating room and transferred from my hosptial bed to the surgical table. When I arrived in the surgery room there were at least five people already in there, all of them were chattering quickly at the same time in Chinese. Very noisy. They put me on my right side and made me very comfortable with blankets. Then I was hooked up to a heart monitor and an automatic blood pressure cuff. Next an IV was inserted into the back of my right hand, after removing yesterday's stem cell IV from my left hand. They put an oxygen mask over my face and asked me several times if I was comfortable. They then washed my bum and back with a very cold solution several times and kept pressing on the knob of my hip bone located just below on left kidney. Next, the anesthesia was injected via the IV, and I slowly drifted off to sleep. Next thing I knew I awoke to see my attending physican, Dr. Mary, who asked me if I was comfortable. I spent about 10 minutes in the recovery room then was wheeled back up to a my room, where I was monitored for approximately ten minutes. No pain whatsoever, and they were all so conscientious about my comfort, it was very important to them. Their anesthesia is so good! Makes you feel like “Oh yeah, nothing in the world will affect me.” I entered the operating room at 8:02 and left at 9:00 am, where I was told I could eat and drink something. I am now required to stay in bed for 24 hours, and cannot shower for three days.
They extracted 200 milliliters of bone marrow from my system which will be cultivated and returned to my system via IV in 13 days. I thought a lumbar puncture would be necessary, but was told for MD patients, no lumbar punctures are preformed.
Here's a shot of the hospital from the street. We are on the very top floor.
For the bone marrow treatment I was shaved and prepped, then wheeled down to the third floor. I was then wheeled into an operating room and transferred from my hosptial bed to the surgical table. When I arrived in the surgery room there were at least five people already in there, all of them were chattering quickly at the same time in Chinese. Very noisy. They put me on my right side and made me very comfortable with blankets. Then I was hooked up to a heart monitor and an automatic blood pressure cuff. Next an IV was inserted into the back of my right hand, after removing yesterday's stem cell IV from my left hand. They put an oxygen mask over my face and asked me several times if I was comfortable. They then washed my bum and back with a very cold solution several times and kept pressing on the knob of my hip bone located just below on left kidney. Next, the anesthesia was injected via the IV, and I slowly drifted off to sleep. Next thing I knew I awoke to see my attending physican, Dr. Mary, who asked me if I was comfortable. I spent about 10 minutes in the recovery room then was wheeled back up to a my room, where I was monitored for approximately ten minutes. No pain whatsoever, and they were all so conscientious about my comfort, it was very important to them. Their anesthesia is so good! Makes you feel like “Oh yeah, nothing in the world will affect me.” I entered the operating room at 8:02 and left at 9:00 am, where I was told I could eat and drink something. I am now required to stay in bed for 24 hours, and cannot shower for three days.
They extracted 200 milliliters of bone marrow from my system which will be cultivated and returned to my system via IV in 13 days. I thought a lumbar puncture would be necessary, but was told for MD patients, no lumbar punctures are preformed.
Here's a shot of the hospital from the street. We are on the very top floor.
Monday, March 23, 2009
Signing Off For a Couple of Days
Its 3:00 pm, Monday, March 23 here in China as I write this. I'll be off the air for a couple of days beginning tomorrow as my bone marrow treatment begins. After they extract the marrow, I will be required to lay still as much as possible for 24 hours. I am told by another patient that the procedure is really not that bad, but it will wear ya out.
Just had my second IV of stem cells a few minutes ago, and expect I'll be bouncing off the walls hyper here in about an hour - just like the last time. However, Jason and I discovered some cool exercise equipment so we're going bicycling as soon as it hits.
Here is a still photo of my electronic accupuncture. I wanted to really give you a video, but uploading videos to Blogspot is the worst. You could have seen all the wires and jumping contractions! They started with 3 needles in each arm, and 3 in each leg. Today they upped that to a total of 24!
Just had my second IV of stem cells a few minutes ago, and expect I'll be bouncing off the walls hyper here in about an hour - just like the last time. However, Jason and I discovered some cool exercise equipment so we're going bicycling as soon as it hits.
Here is a still photo of my electronic accupuncture. I wanted to really give you a video, but uploading videos to Blogspot is the worst. You could have seen all the wires and jumping contractions! They started with 3 needles in each arm, and 3 in each leg. Today they upped that to a total of 24!
Saturday, March 21, 2009
Hangzhou Excursion
Jason and I got some time today to take a trip to Westlake, in western Hangzhou with Jack the Taxi Driver. Driving anywhere in this city is a trip in itself, but we made the 40 minute trip without incident.
It's not the foggy morning it appears. The "fog" effect is actually air pollution.
We also spent time shopping at the Silk Market, a strip of open air shops nearly a mile long. The Silk Market experience was very cool! Lots of haggling (by Jack) with the shop owners produced $2.00 (US) silk ties, silk shirts for less than $15 (US), and others items at unbeliveable prices.
Jack took us to an excellent cafe called The Cappucccino Cafe where we enjoyed Green Tea Cake and Blueberry Cheese Cake. Jason finnaly got a true caffine fix!
Yummmm!!
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