Parkinson's | sleep and fall into bed with severe hallucinations, but it was not Parkinson's who hurt him the most

Text/Yangcheng Evening News all-media reporter Xue Renzheng

Photo/Courtesy of respondents

This year is the 10th year that Mr. Xu (pseudonym), a citizen of Guangzhou, has suffered from Parkinson's disease, and from the age of 59, he was unable to write, and later, when he slept at night, he would fall out of bed because of his muscles trembling, and he would hallucinate in his night dreams.

However, for him, what hurt him the most was not Parkinson's itself, but the frustration that Parkinson had inflicted on him, and after 2 years of illness, he suffered from depression.

11 April is World Parkinson's Day for Disease. Public data show that the prevalence of Parkinson's disease in the elderly over 65 years old in mainland China is 1.7%, the number of patients may exceed 3 million, and the number of new cases is nearly 100,000 every year.

The symptoms of Parkinson's disease mainly include muscle tremors, limb stiffness, slow movement, and may also have symptoms such as olfactory failure, low mood, sleep problems, and stubborn constipation.

In addition, 80% of patients with Parkinson's disease have depressive symptoms.

At the end of 2021, Mr. Xu received BDS (Deep Brain Stimulation) surgery and his condition was greatly alleviated. Recently, the Yangcheng Evening News reporter talked to Mr. Xu and his family to understand how Parkinson's disease affected patients.

"If one day you can't find me, don't look for me."

After two years of illness, he suffered from depression

In 2012, when mr. Xu, 59, was writing proof materials for the unit, he found that his hands were shaking badly, "It is a very ordinary material, it is impossible to shake his hands because of nervousness!" ”

At first, Mr. Xu also suspected that it was only because he was old, which was a common disease of the elderly. But with the increasing frequency of trembling hands and feet and back pain, Mr. Xu had to seek medical advice, and a year later, he was diagnosed with Parkinson's disease.

Mr. Xu's daughter, Ms. Xu, said: "At first, my father was very resistant to the diagnosis, unwilling to admit that he had Parkinson's disease, and even unwilling to take drugs to treat Parkinson's disease. He has always had a strong personality, and he feels that he is a 'wasted man' when he is sick. ”

Mr. Xu is a self-disciplined man: he keeps his life in order, and even after retirement, he arranges his daily life to the fullest. He would clean his home every day, go out for a walk in proper clothes, and show the best of his family and neighbors.

After the illness, Mr. Xu can no longer be like before, even daily things such as eating and sleeping need the assistance of his family, "I am very disappointed in myself. ”

Dad's mood at that time was not only dissatisfaction with himself, but also changes in his every move towards others. After he fell ill, he had to walk slowly on crutches, and when he saw young people walking by him on the road, he would stop and watch others walk away with no expression on his face before slowly retaking steps again; Dad went to pick up his children and grandchildren from school, preferring to stand under the big sun rather than get together with other parents, preferring to let the children come out and bother to find him, rather than let outsiders see his 'weak' appearance; old colleagues wanted to visit him, but they were all rejected, and he was unwilling to 'show weakness' in front of anyone. ”

After being diagnosed with Parkinson's disease, Mr. Xu felt that his "return rate" was significantly higher, and he hated this feeling. On the one hand, he was frustrated, and on the other hand, the stimulation of the outside world made him suffer from severe depression in 2014.

"In 2014, when I lost contact with the 'Malaysia Airlines' accident, I thought, why wasn't it me who was sitting on the plane? I don't accept myself lying in bed as a burden to my family. Mr. Xu sighed: "I sometimes tell my family that if one day you can't find me, don't look for me." ”

At that time, many negative emotions expressed by the family to Mr. Xu were simply understood as the normal emotions of the patient, and the daughter could only enlighten her father over and over again: Parkinson's disease does not directly affect life expectancy, and the family will take care of his life.

But Mr. Xu's emotional problems are getting worse and worse. "We sought the doctor's help, gave Dad antidepressant medication, and took extra care of Dad's mood changes. If our family did not do well enough after Dad's illness, it was to pay more attention to the impact of Parkinson's disease on Dad's physiology and to despise psychological changes. Ms. Xu believes: "The mood of Parkinson's disease patients will become an accelerator of deterioration: the worse the disease, the worse the mood; the worse the mood, the worse the condition, it is easy to enter the vicious circle." ”

Muscles trembled to sleep and fell out of bed

DBS surgery is greatly relieved

"Dad's condition has not actually developed to the point of being completely unable to take care of himself, but many trivial things in life need the help of the family." Ms. Xu introduced that in life, such as eating, drinking water, tying shoelaces and other simple things, Dad will always try to do it himself, but due to muscle trembling and slow movement, he needs the help of his family to do it well.

"Parkinson's was a big blow to my ability to take care of myself in life." Mr. Xu said: "When eating, my hands will continue to tremble, shaking the rice in the spoon so much that the table and the floor are everywhere, and I must concentrate on it to slowly bring the rice into my mouth." Later, when I was eating, I needed to spread some cushions or paper on the table and on the floor to make it easier for my family to clean up. ”

Parkinson's disease also caused serious trouble to Mr. Xu's sleep. His muscles would also tremble involuntarily when he slept, so much so that he sometimes fell from bed to the ground in the middle of the night. "Sometimes I have severe hallucinations, yelling in my sleep, like arguing with someone." Ms. Xu had to install a guardrail on her father's bed.

"Even though we did our best to protect Dad, there were always times when things went wrong." Ms. Xu said that once, Mr. Xu could not stand steadily on the escalator and fell down fiercely, fortunately, he raised his hand in time to protect his head and did not cause too much damage.

▲Mr. Xu was treated in the hospital

"These additional injuries from Parkinson's disease and the deterioration of our condition made us finally decide to give dad DBS surgery." It is understood that Mr. Xu has been taking medopa special drugs for treatment after his diagnosis, and his family did not want Mr. Xu to undergo surgery because of concerns about the safety of surgery. However, as the condition worsened, the efficacy of the drug gradually decreased, and the family learned of the high safety of DBS surgery and finally decided to arrange surgery for Mr. Xu.

At the end of 2021, at the Southern Hospital Affiliated to Southern Medical University, Mr. Xu completed a 7-hour operation, which was successful.

"We are very satisfied with the results of the operation." Mr. Xu smiled: "The ability to move in daily life has improved significantly, now I don't need a protective fence to sleep, the hallucinations in my brain are gone, and walking is no different from other people, I can now put down my cane and walk home by myself!" ”

Ms. Xu also said that after the operation, her father's symptoms were alleviated a lot, his mobility was greatly improved, and he was more cheerful: "If I can choose again, I will let my father perform surgery as soon as possible before his condition worsens." ”

Exclusive conversations

Sheep Evening Reporter: How do you think of Parkinson's disease?

Mr. Xu: Although Parkinson's disease can affect people's ability to move, Parkinson's disease is not a terminal disease and generally does not affect life expectancy. Patients must calm their minds, communicate more with their families and doctors, and actively cooperate with treatment.

Ms. Xu: As children, we will naturally do our best to take care of our parents, but we care more about their physical aspects, think more about their safety and life problems, and it is easy to ignore his psychological aspects. I believe that the psychological impact of Parkinson's disease on patients cannot be ignored, and I hope that other Parkinson's disease patients, families and medical staff will pay attention to it.

What kind of help do you think society can provide for People with Parkinson's disease?

Mr. Xu: I think society has done a good job. I mainly took medoba during my illness, and the cost of medicines per month after Medical Insurance reimbursement was only a few hundred yuan. The cost of surgery is also reimbursed by medical insurance, and the original surgical cost of about 300,000 yuan is only about 130,000, which is already very satisfied.

Ms. Xu: I think we should strengthen the popularization of Parkinson's disease. Dad also saw many doctors in the early stage of the disease, some doctors diagnosed Parkinson's disease, some doctors think it is not Parkinson's disease, before and after the diagnosis took more than a year, hoping to strengthen the medical ability. I learned that some patients who lack relevant knowledge will understand Parkinson's disease as the result of normal human aging, lack of targeted treatment and endure the torment of disease, hoping to let more people know Parkinson's disease, understand Parkinson's disease, and face Parkinson's disease in the whole society. I hope that patients can get timely treatment and not be looked at differently. (For more news, please pay attention to Yangcheng Pie pai.ycwb.com)

Source | Yangcheng Evening News Yangcheng Pie

Editor-in-charge | Liu Xinyu