Reporterin the ; ;South Beijing an ordinary residential areas
,located on the 6 floor room do not decoration ,sofa in the bright window ,54
year-old Li Hong (a pseudonym ) head is a rope pulling ,mouth has an apparatus
then she doesn stop down slobber .
Look at a reporter arrived ,Li Hong smiled .Her daughter also smiled and said to her mother :the reporter to see you ,you are our ladies edition hawking .Li Hong was laughing .Li Hong is a gradually frozen people .
Gradually frozen people with motor neurone disease a generic name ,amyotrophic lateral sclerosis ( abbreviated as ALS ) .This is a malignant disease ,as its name suggests ,sick portrait by snow and frozen ,the loss of any ability to act, but this process is not quickly ,but the body slowly partially atrophy and weakness .
Today is the tomorrow leg ,arm ,acquired by the fingers, even control of eye rotation of the small muscle is not exceptional also ,ultimately respiratory failure .However ,all this is in gradually frozen people conscious ,clear thinking circumstances occur ,they can clearly looked into his own approaching death process .
To say that the world famous gradually frozen people ,that is Stephen Hawking .The world renowned scholars ,with only the activity of several finger manipulation using a mouse on the computer screen to select letters ,words to make sentences ,wrote down immortal masterpiece a brief history of time .
According to Chinese Medical Association to incomplete statistics ,at present, in China there are about 200000 gradually frozen people .They are not only physically weak ,the spirit also is badly in need of attention .
In June 21st, the upcoming global gradually frozen people .Let us approach them, melt them gradually frozen heart .Incidence found not in the mood for doctors say that three five years gradually frozen people is not easy .
Journalists through QQ group ,Chinese Medical Association statistics and other contacts ,eventually finding Li Hong .Her request is anonymous and photograph .Li Hong and daughter was very calm: we interviewed ,I hope the community know there is such a group ,let everyone concerned .
Li Hong is sitting on the sofa ,if not the head was a rope pulling ,her head will be dropped ,because the neck muscles have atrophied ,unable to support .More make her uncomfortable ,she has lost the power of speech .
She used to love love, did not think on this kind of disease .Li Hong look at the picture in the parents ,her parents when young photos ,Daddy Cool ,mom and delicate .Now life has been unable to mom ,dad because worked day and night shows fatigue .
5 years ago, Li Hong began to have this kind of sign of the disease ,she did to boost the morale of the bike ,how to not kick on ,did not care how, then all muscles are shrinking, to the hospital examination ,then people say is this disease .
Li Hong at the time felt the sky is falling down ,because the doctor says years .Now the memories of this period ,Puma 2 On Behalf Sale,the husband of Li Hong very happy :she insisted that she is pretty good, it .
Although Li Hong is now like a baby in need of care ,but they are a family of three in together is very happy . We live in six floor ,no elevator ,but every weekend, my father and I will put my mother down ,go to the supermarket ,she loves shopping .
Li Hong is very thin ,but take up mother ,staggering strength .In order to give Li Hong a doctor ,they had had to rent the house out ,1500 yuan a month ,how is income .Li Hong husband ,but later lived in the cottage lives inconvenient ,they bite the bullet and moved back to the building .
In the treatment of early stage ,Li Hong even thought about jumping subway ,she just didn compromise us . This disease is the most terrible thing is not reversible ,now take medicine treatment of what is the delay of life .
Li Hong mentions these ,eyes staring out of the window .Currently, Li Hong is the Chinese Medical Association to melt gradually frozen heart projects of public welfare recipients ,monthly nearly 4000 Yuan medicine temporarily by the delivery of the item ,but the aid is about to expire .
We are no, this medicine can eat ,delayed a day is a day .Li Hong at once beautiful wife ,MBT Meli,he knew that this life they are meant to be together ,although sometimes also ,christian louboutin,how are we spread the disease .
With the family nanny looked for places a hand to say do not take care of every night up to two or three back to love to turn over ,Li Hong had been accustomed to this day .But nearly 60 years he obviously feel the energy as before, she since a move, at least I can sleep through the night ,not now ,she turned to him ,I can fall asleep quickly .
How to take care of gradually frozen people is a new task ,for Li Hong the family ,everything is done in the dark . We hope gradually frozen people families can often meet ,exchange about how to take care of the patient ,after all this disease who have never met before .
Li Hong says ,once he felt very tired ,want to bite the bullet to find a nanny nanny ,but came to see Li Hong ,he said not to do his .There is also the volunteers came to the Li Hong family ,but only to help cleaning, busy day is gone .
In this way, Li Hong and daughter fumbles in practice to a variety of methods :head can slouch ,we use the rope pulling ;slobber old stream ,Christian Louboutin Platforms,we used a can be hung on the neck of the container and then ;when shampoo has a head band hair are ear ,shampoo will not flow to face .
.. ... To gradually frozen people, to the late will gradually lose the swallowing function .Li Hong is particularly stressed: gastrostomy operation if done early ,it must be done, such as feed water can be directly fed into the stomach inside, or from the mouth to feed ,can choke .
Similarly, for gradually frozen people, late breath also can become an issue ,Nike Air Max Command Mens,the ventilator is indispensable .Chinese Medical Association to melt gradually frozen heart project director of general office Huang Min reminded gradually frozen people families :can the early use of respirator or early .
A month 4000 yuan fee of these drugs are not be covered pressure Li Hong has now done early retirement procedures ,can receive 1500 yuan per month ,the unit also gave Li Hong Li Hong issued a monthly pension ,2000 ,which adds up to enough of a bottle of Medicine ,and this bottle of Medicine nearly 4000 pieces ,which is enough to eat for a month .
We are now at their own expense to these drugs ,because it is not within the scope of the medical insurance .Li Hong says .And with the use of the ventilator gradually frozen people facing cost problem is even more troublesome .
A family in the QQ group introduces to the reporter ,his lover now 20 hours a day are inseparable from the ventilator ,eat like war ,off the mask of half an hour ,will be the fastest speed of the porridge ,noodles ,liquid feed her ,slowly she was gasping for breath ,the ventilator is inseparable from the power supply ,if the power goes out to have her do chest compressions .
The family said ,ventilator to spend 30000 yuan, 2000 yuan every year to spend small replacement mask and an oxygen delivery tube ,these had to be cut ,but the fees can be reduced to this day ,I don how to live .
Huang Min said ,calling for the drug into medical insurance is gradually frozen people .Many families ,annual NPC and CPPCC they also hope that this sound .Chinese Medical Association to melt gradually frozen heart project has expanded the scope of relief medicine .
In addition ,to promoting the development of family home care training ,support communication auxiliary tool development ,especially for patients in daily communication problems ,related research experts have developed with computer assisted communication tools .
At the same time, to assist in the establishment of ventilator ,wheelchairs and other auxiliary tools loan program ,reduce the patients .The association is also struggling to advance the establishment of gradually frozen people public funds .
Blind area families need spiritual counseling this is the family a tough battle east of Dongzhimen an office building in Beijing .Chinese Medical Association to melt gradually frozen heart social welfare projects office ,telephone ringing ,are gradually frozen people families come to the advisory telephone ,they need help urgently .
;now the project has registered 3000 national patient basic information ,according to conservative estimates, the country has about about 200000 gradually frozen people ,this is a conservative estimate ,a lot of people don know is this disease .
In the QQ group ,the reporter understands ,there are some gradually frozen people early don what kind of disease ,everywhere for treatment ,but many doctors tell them is not the same diagnostic results .
Some patients even start to believe you .Huang Min in this case said special emphasis ,or to a regular hospital treatment .Huang Min said ,in the face of this incurable disease ,of unknown etiology ,more often gives a person is powerlessness ,hopelessness after is the person and person trust .
Huang Min had also like to join the group chat group, but patients resent Huang Min recommended drug treatment ,called her selling the medicine ,she just retreat the group . ; ;Huang Min recalled ,gradually frozen people families find she would cry thinly in crash-bang ,mental breakdown ,gradually frozen people and his family by the strong will ,this disease is like a family to fight an uphill battle !In Huang Min ,in addition to treatment to strong support ,for amyotrophic lateral sclerosis family emotional care and spiritual support is also very urgent .
In Japan ,there is a nationwide gradually frozen people association ,often get together to engage in activities,Women Puma Mummy Low, difficulty to move gradually frozen people also can pass their help ,exposure to the outside things ,but also on the family gradually frozen people to ease the pressure of mental counseling .
Look at a reporter arrived ,Li Hong smiled .Her daughter also smiled and said to her mother :the reporter to see you ,you are our ladies edition hawking .Li Hong was laughing .Li Hong is a gradually frozen people .
Gradually frozen people with motor neurone disease a generic name ,amyotrophic lateral sclerosis ( abbreviated as ALS ) .This is a malignant disease ,as its name suggests ,sick portrait by snow and frozen ,the loss of any ability to act, but this process is not quickly ,but the body slowly partially atrophy and weakness .
Today is the tomorrow leg ,arm ,acquired by the fingers, even control of eye rotation of the small muscle is not exceptional also ,ultimately respiratory failure .However ,all this is in gradually frozen people conscious ,clear thinking circumstances occur ,they can clearly looked into his own approaching death process .
To say that the world famous gradually frozen people ,that is Stephen Hawking .The world renowned scholars ,with only the activity of several finger manipulation using a mouse on the computer screen to select letters ,words to make sentences ,wrote down immortal masterpiece a brief history of time .
According to Chinese Medical Association to incomplete statistics ,at present, in China there are about 200000 gradually frozen people .They are not only physically weak ,the spirit also is badly in need of attention .
In June 21st, the upcoming global gradually frozen people .Let us approach them, melt them gradually frozen heart .Incidence found not in the mood for doctors say that three five years gradually frozen people is not easy .
Journalists through QQ group ,Chinese Medical Association statistics and other contacts ,eventually finding Li Hong .Her request is anonymous and photograph .Li Hong and daughter was very calm: we interviewed ,I hope the community know there is such a group ,let everyone concerned .
Li Hong is sitting on the sofa ,if not the head was a rope pulling ,her head will be dropped ,because the neck muscles have atrophied ,unable to support .More make her uncomfortable ,she has lost the power of speech .
She used to love love, did not think on this kind of disease .Li Hong look at the picture in the parents ,her parents when young photos ,Daddy Cool ,mom and delicate .Now life has been unable to mom ,dad because worked day and night shows fatigue .
5 years ago, Li Hong began to have this kind of sign of the disease ,she did to boost the morale of the bike ,how to not kick on ,did not care how, then all muscles are shrinking, to the hospital examination ,then people say is this disease .
Li Hong at the time felt the sky is falling down ,because the doctor says years .Now the memories of this period ,Puma 2 On Behalf Sale,the husband of Li Hong very happy :she insisted that she is pretty good, it .
Although Li Hong is now like a baby in need of care ,but they are a family of three in together is very happy . We live in six floor ,no elevator ,but every weekend, my father and I will put my mother down ,go to the supermarket ,she loves shopping .
Li Hong is very thin ,but take up mother ,staggering strength .In order to give Li Hong a doctor ,they had had to rent the house out ,1500 yuan a month ,how is income .Li Hong husband ,but later lived in the cottage lives inconvenient ,they bite the bullet and moved back to the building .
In the treatment of early stage ,Li Hong even thought about jumping subway ,she just didn compromise us . This disease is the most terrible thing is not reversible ,now take medicine treatment of what is the delay of life .
Li Hong mentions these ,eyes staring out of the window .Currently, Li Hong is the Chinese Medical Association to melt gradually frozen heart projects of public welfare recipients ,monthly nearly 4000 Yuan medicine temporarily by the delivery of the item ,but the aid is about to expire .
We are no, this medicine can eat ,delayed a day is a day .Li Hong at once beautiful wife ,MBT Meli,he knew that this life they are meant to be together ,although sometimes also ,christian louboutin,how are we spread the disease .
With the family nanny looked for places a hand to say do not take care of every night up to two or three back to love to turn over ,Li Hong had been accustomed to this day .But nearly 60 years he obviously feel the energy as before, she since a move, at least I can sleep through the night ,not now ,she turned to him ,I can fall asleep quickly .
How to take care of gradually frozen people is a new task ,for Li Hong the family ,everything is done in the dark . We hope gradually frozen people families can often meet ,exchange about how to take care of the patient ,after all this disease who have never met before .
Li Hong says ,once he felt very tired ,want to bite the bullet to find a nanny nanny ,but came to see Li Hong ,he said not to do his .There is also the volunteers came to the Li Hong family ,but only to help cleaning, busy day is gone .
In this way, Li Hong and daughter fumbles in practice to a variety of methods :head can slouch ,we use the rope pulling ;slobber old stream ,Christian Louboutin Platforms,we used a can be hung on the neck of the container and then ;when shampoo has a head band hair are ear ,shampoo will not flow to face .
.. ... To gradually frozen people, to the late will gradually lose the swallowing function .Li Hong is particularly stressed: gastrostomy operation if done early ,it must be done, such as feed water can be directly fed into the stomach inside, or from the mouth to feed ,can choke .
Similarly, for gradually frozen people, late breath also can become an issue ,Nike Air Max Command Mens,the ventilator is indispensable .Chinese Medical Association to melt gradually frozen heart project director of general office Huang Min reminded gradually frozen people families :can the early use of respirator or early .
A month 4000 yuan fee of these drugs are not be covered pressure Li Hong has now done early retirement procedures ,can receive 1500 yuan per month ,the unit also gave Li Hong Li Hong issued a monthly pension ,2000 ,which adds up to enough of a bottle of Medicine ,and this bottle of Medicine nearly 4000 pieces ,which is enough to eat for a month .
We are now at their own expense to these drugs ,because it is not within the scope of the medical insurance .Li Hong says .And with the use of the ventilator gradually frozen people facing cost problem is even more troublesome .
A family in the QQ group introduces to the reporter ,his lover now 20 hours a day are inseparable from the ventilator ,eat like war ,off the mask of half an hour ,will be the fastest speed of the porridge ,noodles ,liquid feed her ,slowly she was gasping for breath ,the ventilator is inseparable from the power supply ,if the power goes out to have her do chest compressions .
The family said ,ventilator to spend 30000 yuan, 2000 yuan every year to spend small replacement mask and an oxygen delivery tube ,these had to be cut ,but the fees can be reduced to this day ,I don how to live .
Huang Min said ,calling for the drug into medical insurance is gradually frozen people .Many families ,annual NPC and CPPCC they also hope that this sound .Chinese Medical Association to melt gradually frozen heart project has expanded the scope of relief medicine .
In addition ,to promoting the development of family home care training ,support communication auxiliary tool development ,especially for patients in daily communication problems ,related research experts have developed with computer assisted communication tools .
At the same time, to assist in the establishment of ventilator ,wheelchairs and other auxiliary tools loan program ,reduce the patients .The association is also struggling to advance the establishment of gradually frozen people public funds .
Blind area families need spiritual counseling this is the family a tough battle east of Dongzhimen an office building in Beijing .Chinese Medical Association to melt gradually frozen heart social welfare projects office ,telephone ringing ,are gradually frozen people families come to the advisory telephone ,they need help urgently .
;now the project has registered 3000 national patient basic information ,according to conservative estimates, the country has about about 200000 gradually frozen people ,this is a conservative estimate ,a lot of people don know is this disease .
In the QQ group ,the reporter understands ,there are some gradually frozen people early don what kind of disease ,everywhere for treatment ,but many doctors tell them is not the same diagnostic results .
Some patients even start to believe you .Huang Min in this case said special emphasis ,or to a regular hospital treatment .Huang Min said ,in the face of this incurable disease ,of unknown etiology ,more often gives a person is powerlessness ,hopelessness after is the person and person trust .
Huang Min had also like to join the group chat group, but patients resent Huang Min recommended drug treatment ,called her selling the medicine ,she just retreat the group . ; ;Huang Min recalled ,gradually frozen people families find she would cry thinly in crash-bang ,mental breakdown ,gradually frozen people and his family by the strong will ,this disease is like a family to fight an uphill battle !In Huang Min ,in addition to treatment to strong support ,for amyotrophic lateral sclerosis family emotional care and spiritual support is also very urgent .
In Japan ,there is a nationwide gradually frozen people association ,often get together to engage in activities,Women Puma Mummy Low, difficulty to move gradually frozen people also can pass their help ,exposure to the outside things ,but also on the family gradually frozen people to ease the pressure of mental counseling .
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