Archive for December, 2008
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
