One last thing I want to mention are two sites I believe you will find interesting. For more information about sites around the world that treat untreatable conditions using stem cells, go to:
www.repairstemcells.org
This site acts as a clearing house for treatment sites around the world depending on the various illnesses.
Another site is facebook.com where a group of us who have gone through the Beike stem cell program meet to discuss various related topics. The group is called “stem cell recipients”. It currently has a small membership but is growing. – Al
December 12th, 2008
As we have one day left to go, this will be my last post from Qingdao, China. When I first came to China thinking as a retired engineer, I viewed this as a two phase project. Phase 1 will be the introduction of the stem cells into my body. Phase 2 will be the training of the stem cells over the following months with daily physical training. My experience during Phase 1 can be summarized as follows:
Positive results from Phase 1:
1. Loss of constant dizziness.
2. No noticeable fatigue during the day.
3. Modest jogging(really fast walking) and the ability to make small jumps.
4. My voice seems stronger in tone and less slurring, according to Joanne.
5. Slight improvement in walking but still held back by equilibrium problems.
The experience has been a positive one . Aside from the improvements listed, we have also had the chance to really see some brave individuals dealing with much more serious problems than I have. Would I do it again, yes I would, but I would consider going to the Hong Kong facility this time of year due to the tropical like climate.
Phase 2:
I am going to expand my gym at home to include many of the balance exercises I have learned here in Qingdao thanks to Andy. The focus of the gym will be towards balance exercises that I feel will be needed to train the stem cells over the following months. -Al
December 11th, 2008
For the past two days, Andy has had me jog down the hallway with 5lb weights on each leg. I am really going very slow because I’m afraid I won’t be able to stop. But at least I am doing it without falling. I still am not doing heel to toe perfectly so I have to practice that one. Tomorrow I have my last spinal treatment. – Al
The student nurse who asked us to give her an American name (Gigi sounded most like her Chinese name) came in to give us a beautiful Christmas card thanking us for giving her an American name. Gigi mentiioned to us that she was not beautiful, but simple. Our response is that she is simply beautiful. -Joanne
December 9th, 2008
As I previously stated, people with Ataxia cannot jump or leap forward. A week ago, I also could not do this. This week I am jumping forward hands free for the first time in a long time. One leap for man, one giant leap for mankind.
The Romanian lady next door asked me to help translate from french to english for the Chinese doctors. With my Ataxia, I discovered my english voice is hard to understand and gets no better in french. The response from both the english and the french speakers was the same….”huh”?? – Al
The bravery and resolve of the patients defies description. Our english patient’s wife (he has advanced ALS) is something to behold. She said to me “you don’t give in, you carry on until the fat lady sings and she is not singing yet”. How admirable. – Joanne
December 6th, 2008
The blog really has two purposes. One is to keep family and friends informed as to what is going on and the other is to allow people with similar conditions to see what it is like to go through the stemcell program and to keep expectations realistic. Having said that I would like to describe my symptoms for late onset ideopathic cerebellar ataxia. I’m a 67 yr. old male, an artist, in otherwise good health and realizing that each person is different, here are my symptoms:
The condition was first noticed when my golf swing deteriorated 5 years ago. Next I was bumping into things and felt like I was going to fall over while walking.
Constant dizziness- what I mean by dizziness is akin to spinning someone around with their eyes closed and then opening your eyes and trying to walk.
Equilibrium – when the center of gravity shifts, one has a sense that they are leaning over too far and correct for it. I don’t get that sensation that I’m too far over.
Gait – during a normal step, some muscles contract and some release making a step smooth and balanced. I’m sensing that not all muscles are receiving signals from the brain in a proper manner. Therefore, walking is more work than it should be.
Fatigue – constant fatigue even after a good night’s sleep. Sleep is very important to ataxia patients because when one is tired, all symptoms are exaggerated or get worse.
Speech – my speech started to go within the last year. (About year four into the condition.) It takes more effort to pronounce words, voice is weak and slurring of words. I feel a tightness in the throat which raises the pitch of my voice and an excess of saliva when I talk. This also appears to be common among ataxia patients.
Emotion – emotionally I am pretty good – no depression. However in the past year or so I’ve noticed a tendency to respond emotionally-like crying. The feeling occurs rapidly and then dissipates rapidly. For me this is unusual since I am not an overly emotional person. This phenomenon seems to be common to a number of ataxia patients.
Jumping – I have lost all ability to leap forward or jump in a coordinated manner. This also is common to many ataxia patients.
Acid Reflux- I have experienced mild acid reflux this past year. After hearing some other ataxia patients have a similar problem, I think this is a common symptom.
Libido – started to disappear five years ago which I interpreted as age-related but may also be a symptom of the ataxia. Don’t know if this is a common symptom. Most people are reluctant to discuss this.
Spatial judgment-I found myself while driving, I would stop and brake much before the end of the street or stop sign. I also misjudged placing objects on shelves, many times having the object fall off the shelf because it was too close to the edge.
Fine Motor Skills- handwriting is illegible. I used to be good typist but now I find myself missing the keys and hitting the wrong keys. However, I can still can paint.
Muscle Weakness- It was just a few years ago when I could rise up from a sitting position on the floor without using my hands. Now I cannot do it.
Symptoms I don’t have include swallowing difficulties, double vision and muscle pain.
There is help for those who have been told they have no other options. I hope this helps. – Al
Our next door neighbors are a Romanian couple – a woman with advanced MS and her daughter-in-law who is her caregiver. All of the interpreters only speak Chinese and English which is quite a problem. The daughter-in-law speaks French so Al was asked to help communicate with them. He hasn’t spoken French in 40 years but it is coming back enough to help them out. When the interpreters are in a real pinch, they actually call someone in Romania to help with very technical material. So many stories- Joanne
December 2nd, 2008
And now a reality check. We are in the middle of our stemcell treatments. Three down and three to go. From what i know about stemcells, it will take weeks to months for them to go to the site that needs repair, to engraft themselves and to become trained to do repetetive activities. Joanne says she sees improvement in my speech and hovers over me each morning waiting for me to say something. To me it still sounds like Donald Duck with a headcold. Just baby steps.
I don’t expect to throw my crutches away, take off my braces and get out of the wheelchair and go running down the aisle of the airport yelling “I’m cured, I’m cured”. PT seems to be going OK and Andy, my P.T. instructor is upping the difficulty each day. We armwrestled today and we tied. Although I’m sure he was holding back. There’s a big difference between a 25yr. old and a 67 yr. old.
This afternoon I am going to my fourth spinal and am not looking forward to six hours lying on my back. Al
We had the pleasure of an overnight getaway at the nearby Holiday Inn (5star hotel). It was akin to stepping into Shangrila. The people are so gracious and anxious to make everyone comfortable. Oddly, with all this luxury, Al and the other two patients (not the caregivers) couldn’t wait to get back to the hospital. It is their comfort zone. -Joanne
December 1st, 2008
The stemcells arrived late wednesday night, around 8pm. I was wheeled up again in the elevator with the usual bunch of chinese trying to look nonchalant with someone lying in bed next to them. When we got to the ninth floor, Anthony who was ahead of me was being wheeled out and I was next. Dr. Tony was doing the spinal that evening. They injected the usual amount of valium and the local anaesthesia in the back. I did not go as deeply unconscious as I did the first time. I thought “holy crap” I’m going to feel everything. But then the local and spinal kicked in and when the needle went in I didn’t feel a thing. The whole thing was over in a few minutes, no pain. I thought to myself that having the spinal in the evening would be good because the six hours in bed would overlap with my sleep time. Unfortunately, after five hours I woke at 2am, and the neural growth factor seemed to act as a stimulant which kept me awake for the next five hours. So not much real sleep. The next day, a mild headache, not too bad. Because I was tired, PT session went really bad. Probably due to lack of sleep and the headache. In the evening we all went to a Thanksgiving dinner which Joanne will describe later. The following day I had a good night s sleep and pt was moved up to 9am on friday. I don’t know whether it was the rest or the 3 stemcell treatments, but my dizziness is slowly getting better and the PT session went very well. Happy Thanksgiving to everyone. – Al
First, a little background on a meal in our room in the hospital. Plates in our lap with plastic utensils. Thanksgiving dinner at the 5 star Holiday Inn which has only been open for two months was an experience we will never forget. The menu was sweet corn salad, mixed mushroom salad, green salad, cream of pumpkin soup, Roasted Turkey with stuffing and giblet sauce, Gama Ham(fresh ham), sweet potatoes, cranberry sauce and pumpkin pie (really a torte that was to die for). The manager would stand at the head of the table and ask permission to clear the table for the next course. Merlot wine was also part of this extravaganza. The gal who organized this event suggested we go around the table to say what we are thankful for. I will never forget what Al said – he was thankful that his wife was here with him. He couldn’t imagine being here without her. We all were grateful to have the opportunity for hope where there was none, for meeting extraordinary people and for stepping out of our comfort zones and experience life so different from what we are used to. To top this off, the manager arranged to have the hotel cars take us back to the hospital. Don’t think we didn’t go home with doggie bags. He had so much food left over that he packed us each all the leftovers as well as a beautiful package of cookies. The cost of this sumptuous meal was 555 rmb which translates to approximately $75.00 american money for each couple. -Joanne
P.S. I forgot to mention that two chefs carved the meat at the table and plated our dishes which were served by the manager and staff. How elegant. A little aside, I met a chinese female doctor who is visiting this hospital and I mentioned to her how impressed we were with the chinese people who were so anxious to please us and make us comfortable and help us any way they could. She said “it is our duty”. And they perform their duty so very well.-Joanne
November 28th, 2008
I had an interesting experience after the first spinal injectiion. The next morning I woke up with pain in my hamstrings and glutes thinking it was due to p.t. The following morning I woke about 3 in the morning with severe sciatic nerve pain which convinced me that the pain was not muscular but neurological. Taking 3 advil made the pain go away in about an hour. In talking with another patient, he experienced the same thing after his second spinal. The pain eventually left and hasn’t returned. My next spinal is wednesday. To be continued.-Al
November 24th, 2008
Friday, November 21 finally arrived and they promptly took him out of our room on his hospital bed with an IV and took him to surgery at 2:50 p.m. He was back in our room at 3:20 p.m. It took 30 minutes for the whole procedure. He was very groggy from the valium and had to lay flat for six hours. He slept soundly (snoring the whole time) for the six hours. I ordered a pizza which was delivered at 9pm. which we both ate very quickly. I finished my fourth book during this time and could hardly keep my eyes open. I want to mention that when Al was brought back to the room very groggy, I asked him if he wanted anything and he said “a kiss”, which I immediately complied with.-Joanne
Yesterday was a full day for me, a cadre of doctors stopped by to do the usual evaluation of Ataxia. Then a videographer interviewed me at length as well as making a video of the whole process. Apparently I am a good “before” candidate. On tuesday he will return to film my acupuncture, p.t. and electrowave therapy. He will contact us in the states for the “after” reesults.
The spinal stemcell infusion procedure started with a saline IV to keep the body hydrated through the whole process. Frankly the worst part was the ride up in the elevator. We squeezed a few Chinese against the wall since the bed filled the whole elevator. When I got to the stemcell treatment room, I was surprised to see a female doctor since most of the doctors are male. They injected a dose of valium into the IV which burned somewhat at first. Then I became groggy but remained awake through the whole procedure. The last thing I remember was the doctor saying “we’re done now, its finished”. The first three hours was a piece of cake. I was still under the valium. The last three hours seemed to go rather slowly. We had cold pizza at 9pm which reminded me what the crap we eat in the US. compared to my favorite dish here which is vegetable fried rice with tofu. The next day, no pain, no headache. Some slight bleeding from the puncture but nothing more than that.
We did hear some potential news this morning. A patient who left sunday who apparently had minimal response to the treatment and was discouraged, Emailed someone here saying his speech has improved and they are thinking of coming back here in 6 months. -Al
November 22nd, 2008
Another day in the big house. The screws are keeping the inmates quiet by threatening to hose us down. I’m scheduled for an IV this afternoon and they are already two hours late. The stemcells haven’t arrived yet. I asked the Doctor if I receive the Chinese stemcells, will I be able to speak Chinese. I’ve met a lot of people with similar conditions and hope to keep in contact with them in the future. Thanks for your kind words in the comments. Best wishes, Al
November 17th, 2008
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