Beijing, June 21st (Reporter Jing Wong): "The family members of the gradually frozen people are really very hard. They need to help the patients with phlegm and defecation regularly at night. They dare not slack off, otherwise there will be danger …" At the first forum on rare diseases of the gradually frozen people, Wang Jinhuan, chairman of Beijing Oriental Silk Rain Care Center for Rare Diseases of the Gradually Frozen People, said here, and felt a little choked up.
Wang Jinhuan is the wife of a patient with gradual freezing. Husband Liu Jijun became ill in 2006, from being unable to hold a mouthwash cup to being unable to move all over, undergoing gastrostomy and tracheotomy. Wang Jinhuan’s 24-hour home care made her husband "the best frozen person" and they also became model couples in the circle of frozen people.
On May 23, 2021, in Gu ‘an County, Langfang City, Hebei Province, my father picked up the singer Yang Xuefeng from her wheelchair. Yang Xuefeng’s condition was not optimistic, and his usual travel depended entirely on the help of his father and friends (Source: CFP).
"Frostbite", medically called "amyotrophic lateral sclerosis" (ALS for short), has an incidence rate of four in 100,000, and 90% of patients have a survival period of less than five years, which is recognized as one of the five terminal diseases by the World Health Organization. The patients’ brains are conscious, but their muscles continue to atrophy and their mobility gradually loses, as if their bodies were frozen. Today (June 21st) is the 21st Day of Frozen People in the world. Wang Jinhuan appealed that more attention should be paid to the problem of family care for frozen people. "Open up channels for patients’ families to learn family nursing skills, improve patients’ quality of life and prolong their survival time." Wang Jinhuan said.
Regarding assistive devices in home care, Deputy Secretary-General Hou Ping of China Rehabilitation Association for the Disabled said in an interview with this reporter that at present, Shanghai, Beijing, Fujian, Shaanxi and other places have established assistive devices service subsidy systems for the disabled. The assistive devices involve all kinds of disabilities. Friends who are gradually frozen need to know the subsidy policy of local assistive devices for the disabled first, and then apply for subsidies according to their own situation in order to obtain assistive devices adaptation services.
Hou Ping explained that appropriate assistive devices can effectively compensate physical functions and overcome obstacles in life. "If people who are gradually frozen have motor dysfunction, they can adapt appropriate mobility and walking AIDS according to the obstacle situation. Patients with quadriplegia need to be properly equipped, including nursing beds, pressure sore pads and toilet AIDS. For people with quadriplegia who are gradually frozen, although their limb functions are completely lost, they are conscious and have a strong demand for social communication. If they are equipped with computer AIDS, they can open a window for them to understand the outside world. " Hou Ping said.
Earlier, Zhang Haidi, chairman of the China Disabled Persons’ Federation, stressed: "Being incurable does not mean being incurable and recovering. We can help patients with multidisciplinary methods to make their lives longer, more dignified and more quality." Hou Ping feels that this also points out the direction for doing a good job in the service of gradually freezing people.
According to the reporter’s understanding, after the promulgation of "Several Opinions of the State Council on Accelerating the Development of Rehabilitation Aids Industry", assistive devices service policies for the disabled have been introduced all over the country, which has changed the previous phased service based on projects into a long-term mechanism based on demand. While delaying the development of the disease through drugs, we need all-round rehabilitation services, including medical rehabilitation, psychological rehabilitation, social rehabilitation and assistive devices services.
"How to integrate rehabilitation resources, innovate rehabilitation forms, play the role of community rehabilitation, and follow up accurate rehabilitation services in time according to the patient’s condition needs further exploration and practice." Hou Ping said that at present, the rehabilitation nursing training for gradually frozen people has been included in the training plan for rehabilitation talents of China Disabled Persons’ Federation in real-name registration system.
There is a great room for the development of rehabilitation services for people who are gradually frozen, and it still needs to be further strengthened. Hou Ping suggested that it is necessary to adapt assistive devices for people with gradual freezing, especially those with severe gradual freezing, and increase adaptation subsidies to meet the needs. In addition, it provides barrier-free transformation services for families of gradually frozen people and reduces the work intensity of nursing staff. Among them, it is more critical to train rehabilitation nurses, master professional nursing knowledge and skills, and improve the level of rehabilitation nursing.
Source of this article: Yang Guangwang
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