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First, a little background before we get into the depths of this. This is a very painful issue.
Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease, is a progressive, fatal neurological disease affecting as many as 20,000 Americans with 5,000 new cases occurring in the United States each year. The disorder belongs to a class of disorders known as motor neuron diseases. ALS occurs when specific nerve cells in the brain and spinal cord that control voluntary movement gradually degenerate. The causes of this degeneration are currently unknown, but some theories suggesting viral illness, glutamate excess, trauma, axonal strangulation, and aggregation of protein, have been brought forth. The loss of these motor neurons causes the muscles under their control to weaken and waste away, leading to paralysis. ALS manifests itself in different ways, depending on which muscles weaken first. Symptoms may include tripping and falling, loss of motor control in hands and arms, difficulty speaking, swallowing and/or breathing, persistent fatigue, and twitching and cramping, sometimes quite severely. ALS is characterized by both upper and lower motor neuron damage. Symptoms of upper motor neuron damage include stiffness (spasticity), muscle twitching (fasciculations), and muscle shaking (clonus). Symptoms of lower motor neuron damage include muscle weakness and muscle shrinking (atrophy).
There are two pathological types: Bulbar and Limb (or Peripheral). Bulbar refers to pathological changes in the brain stem where motor neurons are concentrated. Bulbar ALS is the type of ALS where speaking and swallowing difficulties are the first symptoms; drooling because of difficulty swallowing is also manifest. Many patients with bulbar ALS are unable to speak or eat but are able to walk and write. Bulbar-onset ALS patients generally have a faster disease progression than do limb-onset patients. Limb-onset patients eventually develop bulbar symptoms as their disease progresses. Limb onset ALS, are those with upper or lower motor neuron disease symptoms.
There are three statistical types: familial, idiopathic, and Guamian. In about ten percent of ALS patients, there has been some evidence of hereditary factors. Most cases have unknown causes. There seems to be a higher incidence in those people from Guam, for some unknown reason.
ALS usually strikes in mid-life. Men are about one-and-a-half times more likely to have the disease as women. The incidence of ALS is about two per 100,000. The prevalence of ALS is about 11 per 100,000. In the United States, approximately 30,000 people are living with ALS. There are about 5,000 new cases per year, or 15 per day.
ALS progression can vary considerably with different patients. A common progression is as follows: difficulty walking resulting in the use of a cane followed by a walker and then a wheelchair. As the legs get weaker so do the arms and hands. The patient loses the ability to write, type, and feed themselves. As the muscles of the limbs become weaker, difficulties in speaking and swallowing begin to occur. This may result in the need for an augmentative communication system in order to communicate and a feeding tube in order to get adequate nutrition. Typically, the ALS patient has a gradual decrease in lung vital capacity as the muscles of the chest and the diaphragm begin to weaken. When lung vital capacity drops below 50%, the ALS patient needs to consider using a ventilator in order to stay alive. This progression may be as quick as six months or as long as several years.
There is no cure for ALS; nor is there a proven therapy that will prevent or reverse the course of the disorder. The Food and Drug Administration (FDA) recently approved riluzole, the first drug that has been shown to prolong the survival of ALS patients. Patients may also receive supportive treatments that address some of their symptoms. ALS is usually fatal within five years after diagnosis. 50% of ALS patients die within 18 months after diagnosis. Only 20% survive 5 years and 10% live longer than 10 years. Persons with ALS who go on a ventilator may live for many years. Improved treatment is allowing ALS patients to live longer than before.
Death usually is brought on by pneumonia or respiratory failure.
The most famous individual with this disease, other than the famed baseball player, Lou Gehrig (for which the disease is also occasionally named), is Stephen Hawking. He has suffered with the disease for over thirty five years. At present, he can only move two fingers.
The following is an actual email correspondence that I have had with an ALS patient. Read it carefully.
Dear doc,
I located this site while looking for the following video:
Dr. Ji Liang Chen: Ba Duan Jin Qi Gong (Eight Pieces of Brocade)**NLA*
Today an article came to my attention http://www.itmonline.org/arts/als.htm about a Chinese doctor having success treating patients with ALS (Lou Gerig's Disease). I am two years from onset of ALS and am currently able to stand and walk only with my walker and even that is getting more difficult. This article mentioned the above Qi Gong exercises, and I am hoping that I might be able to do them, even if in some modified form. However, all leads to this video say "no longer available" so I am quite disappointed.
I am starting accupuncture and Chinese herbs on Monday and was hoping to add this also to my therapy. Could you tell me if there is any way I might obtain this video from any other source, maybe even as a used item or a copy or anything. I am willing to pay the full retail price if I could just locate the product. Or, do you have any other suggestions for me? My voice is no longer understandable so I must communicate by e-mail.
Thanking you in advance for any assistance you can provide.
xxxxxx
HI
Sorry about the delay. I've got more to write about this issue. But, for now, no, we don't have any tapes on Ba Duan Jing Qi Gong. Can't recommend any good ones either.
So, I'm going to make one for you tonight. We'll put it on DVD. Send me your address so I can mail it to you
Take care of yourself. More later.
doc
Dear doc,
Thank you so much. I don't know what to say to your great generosity except that I am sincerely appreciative. My address is as follows:
xxxx
xxxxx
xxxxx
I am having acupuncture treatments twice a week now and started the Chinese herbs today. I have great hopes of stablizing my condition while the search continues for a cure. Again, I am very appreciative of your efforts on my behalf. My heart is full!
Blessings,
xxxxxx
Hi,
I sent it out. You should have it by now. If you need anything else, don't hesitate to ask.
Hope you're doing ok
doc
Thanks so much for the DVD. I received it today, but it would not play. It said first, "no audio" and then said "Not usable with this disc". I'm assuming this goes in the DVD player just like a movie video. Did you check it before you mailed? Or, am I just equipment-challenged! If you have any clue what I am doing wrong, please let me know.
I so loved the picture on front. I just stared at him for a long time.
Love and blessings,
xxxxx
It is not a DVD. We made a VCD, so it should automatically work, in your computer, with Windows Media Player. Try it in your computer and let me know. We tested it before we sent it.
Best wishes,
doc
Okay, so I'm electronically-challenged. How would you know I needed instructions like "insert disc into computer". I'm having a great chuckle! Good for the soul.
I am so very appreciative of both your and Shi De Cheng's efforts. The video is magnificent! I cannot stand, at this time, unassisted. I'm hoping that even by sitting and doing what I can with my arms and upper body that this will be of some assistance to me. I could feel the energy moving through my body just watching the video. He is art in motion. Quite beautiful.
Please express my gratitude to Shi De Cheng for me. The gift is genuinely appreciated.
Blessings,
xxxxxxx
Glad it's working for you. Take it easy. One step at a time. As Shi De Cheng says, you climb a mountain one step at a time.
Take care,
doc
Two months later, after having lost touch with this individual:
Hi
Just checking in to see how you're doing. Just wanted you to know that I was thinking of you, as is Shi De Cheng. He is back at the temple now in China, and has informed me that he will pray for your better health.
Take care,
doc
There is much to learn from this. Much to learn...
Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig's disease, is a progressive, fatal neurological disease affecting as many as 20,000 Americans with 5,000 new cases occurring in the United States each year. The disorder belongs to a class of disorders known as motor neuron diseases. ALS occurs when specific nerve cells in the brain and spinal cord that control voluntary movement gradually degenerate. The causes of this degeneration are currently unknown, but some theories suggesting viral illness, glutamate excess, trauma, axonal strangulation, and aggregation of protein, have been brought forth. The loss of these motor neurons causes the muscles under their control to weaken and waste away, leading to paralysis. ALS manifests itself in different ways, depending on which muscles weaken first. Symptoms may include tripping and falling, loss of motor control in hands and arms, difficulty speaking, swallowing and/or breathing, persistent fatigue, and twitching and cramping, sometimes quite severely. ALS is characterized by both upper and lower motor neuron damage. Symptoms of upper motor neuron damage include stiffness (spasticity), muscle twitching (fasciculations), and muscle shaking (clonus). Symptoms of lower motor neuron damage include muscle weakness and muscle shrinking (atrophy).
There are two pathological types: Bulbar and Limb (or Peripheral). Bulbar refers to pathological changes in the brain stem where motor neurons are concentrated. Bulbar ALS is the type of ALS where speaking and swallowing difficulties are the first symptoms; drooling because of difficulty swallowing is also manifest. Many patients with bulbar ALS are unable to speak or eat but are able to walk and write. Bulbar-onset ALS patients generally have a faster disease progression than do limb-onset patients. Limb-onset patients eventually develop bulbar symptoms as their disease progresses. Limb onset ALS, are those with upper or lower motor neuron disease symptoms.
There are three statistical types: familial, idiopathic, and Guamian. In about ten percent of ALS patients, there has been some evidence of hereditary factors. Most cases have unknown causes. There seems to be a higher incidence in those people from Guam, for some unknown reason.
ALS usually strikes in mid-life. Men are about one-and-a-half times more likely to have the disease as women. The incidence of ALS is about two per 100,000. The prevalence of ALS is about 11 per 100,000. In the United States, approximately 30,000 people are living with ALS. There are about 5,000 new cases per year, or 15 per day.
ALS progression can vary considerably with different patients. A common progression is as follows: difficulty walking resulting in the use of a cane followed by a walker and then a wheelchair. As the legs get weaker so do the arms and hands. The patient loses the ability to write, type, and feed themselves. As the muscles of the limbs become weaker, difficulties in speaking and swallowing begin to occur. This may result in the need for an augmentative communication system in order to communicate and a feeding tube in order to get adequate nutrition. Typically, the ALS patient has a gradual decrease in lung vital capacity as the muscles of the chest and the diaphragm begin to weaken. When lung vital capacity drops below 50%, the ALS patient needs to consider using a ventilator in order to stay alive. This progression may be as quick as six months or as long as several years.
There is no cure for ALS; nor is there a proven therapy that will prevent or reverse the course of the disorder. The Food and Drug Administration (FDA) recently approved riluzole, the first drug that has been shown to prolong the survival of ALS patients. Patients may also receive supportive treatments that address some of their symptoms. ALS is usually fatal within five years after diagnosis. 50% of ALS patients die within 18 months after diagnosis. Only 20% survive 5 years and 10% live longer than 10 years. Persons with ALS who go on a ventilator may live for many years. Improved treatment is allowing ALS patients to live longer than before.
Death usually is brought on by pneumonia or respiratory failure.
The most famous individual with this disease, other than the famed baseball player, Lou Gehrig (for which the disease is also occasionally named), is Stephen Hawking. He has suffered with the disease for over thirty five years. At present, he can only move two fingers.
The following is an actual email correspondence that I have had with an ALS patient. Read it carefully.
Dear doc,
I located this site while looking for the following video:
Dr. Ji Liang Chen: Ba Duan Jin Qi Gong (Eight Pieces of Brocade)**NLA*
Today an article came to my attention http://www.itmonline.org/arts/als.htm about a Chinese doctor having success treating patients with ALS (Lou Gerig's Disease). I am two years from onset of ALS and am currently able to stand and walk only with my walker and even that is getting more difficult. This article mentioned the above Qi Gong exercises, and I am hoping that I might be able to do them, even if in some modified form. However, all leads to this video say "no longer available" so I am quite disappointed.
I am starting accupuncture and Chinese herbs on Monday and was hoping to add this also to my therapy. Could you tell me if there is any way I might obtain this video from any other source, maybe even as a used item or a copy or anything. I am willing to pay the full retail price if I could just locate the product. Or, do you have any other suggestions for me? My voice is no longer understandable so I must communicate by e-mail.
Thanking you in advance for any assistance you can provide.
xxxxxx
HI
Sorry about the delay. I've got more to write about this issue. But, for now, no, we don't have any tapes on Ba Duan Jing Qi Gong. Can't recommend any good ones either.
So, I'm going to make one for you tonight. We'll put it on DVD. Send me your address so I can mail it to you
Take care of yourself. More later.
doc
Dear doc,
Thank you so much. I don't know what to say to your great generosity except that I am sincerely appreciative. My address is as follows:
xxxx
xxxxx
xxxxx
I am having acupuncture treatments twice a week now and started the Chinese herbs today. I have great hopes of stablizing my condition while the search continues for a cure. Again, I am very appreciative of your efforts on my behalf. My heart is full!
Blessings,
xxxxxx
Hi,
I sent it out. You should have it by now. If you need anything else, don't hesitate to ask.
Hope you're doing ok
doc
Thanks so much for the DVD. I received it today, but it would not play. It said first, "no audio" and then said "Not usable with this disc". I'm assuming this goes in the DVD player just like a movie video. Did you check it before you mailed? Or, am I just equipment-challenged! If you have any clue what I am doing wrong, please let me know.
I so loved the picture on front. I just stared at him for a long time.
Love and blessings,
xxxxx
It is not a DVD. We made a VCD, so it should automatically work, in your computer, with Windows Media Player. Try it in your computer and let me know. We tested it before we sent it.
Best wishes,
doc
Okay, so I'm electronically-challenged. How would you know I needed instructions like "insert disc into computer". I'm having a great chuckle! Good for the soul.
I am so very appreciative of both your and Shi De Cheng's efforts. The video is magnificent! I cannot stand, at this time, unassisted. I'm hoping that even by sitting and doing what I can with my arms and upper body that this will be of some assistance to me. I could feel the energy moving through my body just watching the video. He is art in motion. Quite beautiful.
Please express my gratitude to Shi De Cheng for me. The gift is genuinely appreciated.
Blessings,
xxxxxxx
Glad it's working for you. Take it easy. One step at a time. As Shi De Cheng says, you climb a mountain one step at a time.
Take care,
doc
Two months later, after having lost touch with this individual:
Hi
Just checking in to see how you're doing. Just wanted you to know that I was thinking of you, as is Shi De Cheng. He is back at the temple now in China, and has informed me that he will pray for your better health.
Take care,
doc
There is much to learn from this. Much to learn...