how als change my life essay

Teresa's story: how ALS changed my life

Last updated: 12 April 2019

You can legally access new medicines, even if they are not approved in your country.

'During adversities I always try to see the good side and to see why things happen...it's just a characteristic I have.'

Meet Teresa from Portugal. Spending years as a caregiver, she became an integral part in setting up the Associação Portuguesa de Esclerose Lateral Amiotrofica (Amyotrophic Lateral Sclerosis Portuguese Association, or APELA). 

Now her story begins. Teresa had a pleasant life with family and friends. Her husband was an active person who would take the jeep for a spin, or hop on his motorcycle to drive around the countryside. Then one day everything changed. After experiencing leg cramps and muscle spasms her husband visited his doctor. They were referred to a neurologist who said, 'You have a neurological degenerative disease that has no cure. We don't know the reason for this disease and you will probably be in a wheelchair in a year and will not walk again.'

Her husband had amyotrophic lateral sclerosis, more commonly known as ALS or MND (motor neuron disease). They were devastated. ALS is a progressive disease affecting the nerve cells that control voluntary muscle movement. Over time the muscles weaken and waste away making it more and more difficult to stand, speak, swallow food or even breathe.

Expectations and frustrations

After reading more about the disease, Teresa came to the conclusion that ALS patients at that stage typically had a 3-5 year life expectancy. However, her husband would survive another 11 years and she would stand by him till the end.

Teresa: I was 39 years old so I thought I could just put my life in stand-by and treat him, then resume my life afterwards. And that's what I did, it was a decision I made. [...] The first two years of the illness were very difficult because we did not have time to get used to one situation before we had another one to adapt to. [...] He was very upset about the situation...he was a perfectionist and not being able to do things, it was very complicated.

Patients go to the limit of their abilities

Her husband continued to work for as long as he could. Even when he could no longer walk, he still drove. 'This is normal for patients like him,' Teresa said, 'they go to the limit of their abilities.' A that point eating became very difficult and it would take two hours to feed him lunch. Eventually it became necessary to use a feeding tube. There was a complication while placing the feeding tube, and her husband had the choice between being tracheostomised or to die.

Teresa: It was horrible for me, it was a like bucket of cold water and I remember that I cried so much with the doctor and told him that. I did not know if he would want it.... I never talked to him about the disease, we never talked about how things were going, we always lived day to day, as normal as possible.

[He] asked me, “If I do the tracheostomy will you stay with me?”, and I answered, “Of course. Do you think I stayed with you these two years only to leave you now? Of course I'll stay with you.” And he said, “In that case, I want to do it.” It was a very special day for me because I don’t think I had heard my husband say that he loved me for years, until I heard it that day. After telling him that I was staying with him until the end, he said that he loved me and I think it was worth it just for that.

A day in the life

Teresa: Normally he liked to lie in bed in the morning, he had a television in the bedroom, so he slept and watched a lot of TV. There was a lady who used to help me out in the house with housekeeping, so I used to take this little bit of the morning and I would go out for a little while, which was never too long. I would get up between 7 and 8 am, check his airways, [take care of his] hygiene, and give him breakfast. I'd then leave home at around 11am or noon, and the maid would leave at 1pm, so I’d go out for about an hour. Often rushing everywhere and sometimes I wouldn’t even go out because it wasn’t worth it. If I did go out, it would be for trips to go to the pharmacy, to the supermarket and to visit my mother and be with her for a while, because otherwise I couldn't spend time with her.

Then at 1 o'clock the maid would leave, and it was me who stayed at home. I would lift him from his bed, dress him normally (he never stayed in bed, he didn’t want to), shower him twice a week, give him lunch and in the afternoon we would be there, at home. He was on the computer, he had a specific program that worked with his eyes, and he liked to go to Facebook, read the news, watch a movie if there was one on television that he liked. And I would stick around. At first I had a little more availability because I did not have to be next to him all the time. In the last two years I could not leave his side. The fact that he was so sick for years meant that his eyelid muscles themselves were tired, so he couldn’t blink as easily, which made it hard for him to use the computer. So I spent afternoons leaning on his armchair to click enter on his computer. I spent afternoon after afternoon like that.

Surviving much longer than originally thought, Teresa's husband connected with an ALS patient group and became good friends with a fellow patient. This also gave Teresa some valuable perspective and comfort that she was not alone in this situation. Teresa's husband was able to see his daughters grow up and after battling this disease for 11 years he passed away on Christmas day.

Teresa: I had 33 people spending Christmas at my house...I let him watch TV, like he did every day and went to the kitchen. It was 12:30 and I went to him and said, "People are coming and you're still like this?" Let's get you ready! And he was dead, he’d fallen asleep, it was the most peaceful thing in the world. [...] It had to happen, we knew it was going to happen, but no one expected it, of course, we are never prepared. But I think he chose a perfect day.

Looking back, would you do anything differently?

Teresa: No, not for me. […] I don’t tell people to do things very differently from what I did, because these patients need lots of love and patience. [But] my body started to say, come on, you can't take it anymore. By then I was physically very tired. [...] It was me who carried him alone, who showered him alone, who moved him from the bed to the chair and from the chair to the bed by myself…. I started having heart problems. [...] I am aware that I had reached the limits of my abilities and so had he. [...] I felt that things had to end soon or something would go wrong and I would get [too sick to care for him]. [...] What I say is to seek help because I never had anyone to help me.

Latest articles

Plan International's websites

Find the Plan International website you are looking for in this list

Because of ALS, I started to dream

8 JULY 2020

By Rebecca Rose B. Enriquez

It is never too late to chase after your dreams.

At 48, Vivencio is on his way to his. He recently graduated from senior high school, under the technical-vocational-livelihood (TVL) track.

Vivencio spent most of his years working, and until recently, earning that elusive diploma was nothing but a dream.

As a child, Vivencio helped his parents earn a living. He juggled work and school, sometimes missing classes for a week straight in favor of farming. For extra income, he also climbed trees to collect coconuts which are to be extracted for its oil.

He had his eyes set on college, but was unable to finish high school due to financial problems. And yet, “life must go on,” Vivencio reminded himself.

After dropping out of school, Vivencio worked different jobs, most of which relied on hard physical labor. He manually mixed cement, drove a tractor, cut hair, carried and delivered loads of produce on his back. Late into his 40s, he decided to return to school, while also keeping his job. But how is that even possible?

He found the answer through the Alternative Learning System (ALS).

A student once again

Millions of young Filipinos dream of finishing their studies; unfortunately, not everyone can turn this dream into a reality.

There are 17.7 million Filipinos living in poverty as of 2018, according to the Philippine Statistics Authority. Poverty continues to prevent a lot of Filipino children from exercising their right to education.

The ALS program allows out-of-school children and youth to continue their education through modular and flexible means. The pace of learning depends on the student’s convenience and availability.

ALS helps those who cannot physically go to school on a daily basis due to various reasons. At the end of the program, learners can complete their primary or secondary education.

At first, Vivencio doubted himself because of his age. But his strong drive to earn a high school diploma pushed him to enroll in the ALS program. He realized there was nothing to ashamed of; instead, he should be proud of his decision to continue learning.

Under the ALS program, Vivencio was not required to go to school everyday, which meant he could continue earning a living through his many jobs.

He managed his time well, working in the day and focusing on his studies and assignments afterwards. Throughout the process, his ALS teachers supported him.

After a year of hard work, Vivencio passed his Accreditation and Equivalency Test for Secondary Level. This means he completed his studies until 10th grade.

Where was he headed next? Senior high school.

Without any hesitation, Vivencio enrolled at the Clarencio Calagos Memorial School of Fisheries under the TVL track, specializing in Electrical Installation and Maintenance (EIM).

He plans to use such electrical skills for a sideline business, which could help him save enough money for college. Vivencio worked double time in order to afford his school uniform and other miscellaneous fees.

After two years of toiling away at school, he finally earned his EIM National Certification in March 2020.

Learning adventure

“My life is full of adventures,” Vivencio said in Filipino. “When I was small, I experienced a lot of hardships because of poverty.”

“My family was unable to eat three meals a day because my parents earned just enough to pay off debts,” he continued. “When I left school to work full-time, I was able to help my parents but still, it was not enough.”

That was when he decided to return to school.

“After enrolling at ALS, I started aiming higher,” he shared. “I knew that this learning opportunity would bring me one step closer to college.”

Vivencio admitted that he still encountered difficulties during his ALS studies, “but I had to fight my feelings of hopelessness because I still had dreams to chase.”

“I wanted to learn how to use a computer, I want to be tech-savvy,” Vivencio explained. “I wanted to learn how to communicate with clients, I wanted to be confident in expressing my ideas, and I wanted to be heard. I wanted to influence others to do good.”                    

And he learned all of the above through the  Life Skills Trainings  he attended through Plan International’s RAISE Above Project.

The project also provided financial support to tech-voc learners like Vivencio throughout their learning journey.

According to his teacher, Vivencio is a hardworking and caring student. She never heard him complain of the many tasks they had to accomplish as students and on-the-job trainees.

“Vivencio was always ready to accomplish any task,” his teacher proudly shared. “He had poor eyesight, so he had difficulty with seeing small objects such as screws,” the teacher continued. “And yet he never complained, he did the tasks well.” His teacher also observed that Vivencio enjoyed assisting classmates in whatever way he could. In fact, many of his classmates fondly call him  kuya , which translates to “big brother.”

What is Vivencio’s next destination? College.

He recently took entrance exams. Vivencio wants to major either in mechanical or electrical engineering.

But then the COVID-19 pandemic broke out and Vivencio was filled with anxiety.

He temporarily lost his jobs, which worried him because he had college tuition fees to pay off. He also felt quite sad because his first college experience would have to be put on hold, as classrooms prepare to move online. Whenever all the fears and worries pile up on Vivencio, he stares at his high school diploma and graduation photo. Here, he finds the strength to keep on learning.

“How could I give up now,” he tells himself, smiling. 

Rebecca Enriquez is a Community Development Facilitator under the RAISE Above Project, under Plan International’s  Youth Economic Empowerment Program .

The  RAISE Above Project  empowers Filipinos by making them better realize their rights to education and skills development. We want the youth to raise their hands, raise their voice, and for them to rise above the challenges their communities face.

The Project is implemented by  Plan International Philippines  in  Western Samar.  It is funded by  Dubai Cares .

Education, Skills and work, Vocational training

Related pages

Irish's small start to success, a young mother's dream to venture into business, technical-vocational education and training program produce 80 new graduates in barmm.

Cookie preferences updated. Close

This popup will be triggered by a user clicking something on the page.

• Toggle Accessibility Statement
• Skip to Main Content

Rising from every fall: The story of an ALS completer, passer in Zamboanga City

June 20, 2018

Confucius once said, “Our greatest glory is not in never falling, but in rising every time we fall.”

Zsarra Liez Sinsuan is a living testament that downfalls serve as wake-up calls to rethink and reprioritize our goals.

Despite the difficult circumstances she had to endure during her teenage years, Zsarra – a single mother from Zamboanga City – has already taken the first step towards realizing her dreams when she finished Junior High School in April 2018 through the Department of Education’s (DepEd) Alternative Learning System (ALS).

Zsarra became a mother at such a young age. At 16, she is already taking care of her two kids, which forced her to drop out of high school. Her vision of a happy family vanished when her husband started to hurt her physically. This eventually led to their separation.

Together with her children, Zsarra had to transfer from one barangay to another. They even travelled to Manila, where she had to work as a cashier to provide for her children and keep them safe from the threats of her husband.

“ALS is like good news that assures the establishment of my path towards the fulfillment of my dreams. Although this is just the first step in the ladder of education, still, it is a step in the right direction,” Zsara shared.

All her hard work paid off when she passed the 2017 ALS Accreditation and Equivalency (A&E) Test. In her speech during their graduation, Zsara did not forget to thank the people behind the program:

“We are more than happy and grateful for the people behind our success, our ALS implementers, and the local government unit for giving us the necessary support in establishing our road to success.”

“I thank the Department of Education for coming up with a program that gives hope to hopeless individuals. This is a concrete response to the pressing need to grant dropouts and school leavers with a second chance in life regardless of their age,” she concluded.

By: Benilda S. Pagobo District ALS Coordinator Mercedes District, Division of Zamboanga City

How my ALS has taught me that change brings opportunity

When I'm frustrated with schedule interruptions, I redirect my focus

by Dagmar Munn | July 16, 2024

Share this article:

How do you handle an unexpected change to your plans for the day? Do you shake your fist in the air and complain, or pause and look for opportunities?

Last week, I was doing a little of both. I have ALS , and even though all of my life plans came to a full stop on the day I received my diagnosis , I also began learning valuable lessons in coping with change, especially the simple disruptions I experience every day that teach me to live with ALS . Here’s my latest lesson.

Last week, I had one of those days that began as normal as can be. I was at my computer attacking a long to-do list that included answering emails, a few moderator duties on the ALS News Today Forums , and finishing up my weekly column so I could turn it in by that evening’s deadline. My work table is near a large window, and that day the sky was blue with a few large storm clouds looming in the distance.

I live in southern Arizona, where the summer months are often called monsoon season. Days of intense heat are interrupted by sudden, strong, “gully washer” thunderstorms. Once in a while, a bolt of lightning will cause the power and internet to go out in our area. While they’re usually back on within a few minutes, occasionally they’re off for several hours.

A change of scenery is helpful for mental health with ALS

No connection.

That’s exactly what happened to me last week. One moment I was typing away and the next I was staring at a frozen screen. Glancing out the window, I shot the storm clouds a menacing look and waited out the usual few minutes for everything to be restored. But nothing happened, and my patience grew thin. Anger began flooding my body, followed by frustration and finally disappointment that my carefully time-blocked to-do list was now off-schedule. Mentally, it was a shake-fist-in-the-air moment.

Sitting in the silence of no internet, no TV, and no ever-present Alexa voice, I turned to one of the coping strategies I’ve learned from living with ALS and decided to turn the situation upside down. If this was to be a change of my day’s plans, I pondered, I needed to ask the question, “What are the opportunities here?”

My answers ranged from, “Wasn’t I always complaining about how much time I spend at the computer? Didn’t I want to spend more time on projects-in-waiting, such as my knitting or sorting through the stack of catalogs collecting on the corner of my table?” And “Why not enjoy feeling untethered to my many electronic devices?”

And that’s exactly how I spent the next few hours, tending to projects I’d put off for too long and enjoying sitting in peace and quiet. By the time our internet popped back on, I felt calm, relaxed, and fine with tackling my to-do list — the next day.

The big change

In 2010, when I sat in my doctor’s office and she told me I had ALS, deep down I knew that meant a permanent change. I mourned the loss of my life goals, my expectations, and the familiar “me.” Throughout the years since, I’ve learned to cope. And to look for opportunities.

What opportunities have I found? The “opportunity” to go forward with my life. Yes, I push a wheeled walker, wear ankle-foot orthoses, use a thickening powder in my drinks, and pronounce words with great care. Sure, my life goals may have been modified, but I’m still participating in life.

A bigger lesson

I’ve learned that every time I successfully cope with unexpected changes in my daily life — the microchanges — I’m learning to better cope with the macrochanges my ALS brings me.

It takes practice. When you face a change, large or small, try these strategies. Look for opportunities, maintain self-care, ask family members for help, be adaptable , and check in with your feelings .

Let’s help each other learn how to live well while living with ALS.

Note:  ALS News Today  is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or  treatment . This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.

About the Author

Jeannette Rae Dolan

You are AMAZING! I watched my younger sister be diagnosed and quickly progress through ALS. She was gone within a year of diagnosis. She probably had symptoms a few months prior. It was horrific! When I read the word “opportunity” and ALS in the same sentence, I actually dismissed it. Then I thought, I’m going to read it. I’m glad I did. My sister wasn’t as fortunate, and her life ended early at 57, but I’m glad you are doing so well. Are you on a certain regimen for your success? I try to follow updates on ALS in Denise’s memory.

Leave a comment

Fill in the required fields to post. Your email address will not be published.

Recent Posts

• What we can learn from living out loud with ALS

C-Path grant aids work into way of protecting nerve cells in ALS

Private caregiver wanted — because i need to sleep, selenium levels found elevated in als patients treated with qalsody.

• Deficits in protein-metal complexes may underlie SOD1-ALS: Study

Recommended reading

Subscribe to our newsletter

Get regular updates to your inbox.

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• Wiley Open Access Collection

The illness experience for people with amyotrophic lateral sclerosis: A qualitative study

Meng‐mei yuan.

1 Department of Nursing, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan China

3 Department of neurology, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology, Wuhan China

Tie‐Ying Zeng

Mei‐li‐yang wu.

2 School of Nursing, Tongji Medical College, Huazhong University of Science and Technology, Wuhan China

Xue‐Jun Wang

Associated data.

Some or all data, models, or code generated or used during the study are available from the corresponding author by request.

Aims and objectives

This study aims to gain a comprehensive understanding of the illness experience of amyotrophic lateral sclerosis (ALS) patients in China and the meaning they attach to those experiences.

ALS is a progressive and fatal neurodegenerative disorder that significantly impacts individuals and families. There is a large number of patients with ALS in China. However, little is known about how they live with ALS.

Phenomenological qualitative research was performed among twenty people with ALS from the neurology department of a tertiary hospital in China. Colaizzi's method was used to analyse the participants’ data. The Consolidated Criteria for Reporting Qualitative Research (COREQ) was used as a guideline to secure accurate and complete reporting of the study.

We proposed three themes and eight subthemes on the illness experience of participants: (1) life countdown: ‘my body was frozen’ (body out of control and inward suffering); (2) family self‐help: ‘we kept an eye on each other’ (family warmth and hardship, and supporting the supporter); and (3) reconstruction of life: ‘what was the meaning of my life’ (learning to accept, rebuilding self‐worth, resetting the priority list and living in the moment).

Conclusions

In the family self‐help model, patients are prompted to turn from negative mentalities to search for meaning in life actively. Healthcare providers need to attach importance to the family self‐help model to alleviate the pressure on medical resources.

Relevance to clinical practice

Healthcare providers should encourage patients to play a supportive role in the family and provide more care support and professional care knowledge guidance to caregivers, to promote the formation of the family self‐help model which might help to improve the experience of patients and families.

What does this paper contribute to the wider global clinical community?

• Demonstrates that suffering from ALS is a painful journey with physical, psychosocial and existential issues. The findings enhance healthcare providers’ understanding of patients’ concerns and needs, even in different cultural settings.
• Healthcare providers need to attach importance to the family self‐help model, especially for countries with insufficient medical resources. Professional care and knowledge support should be provided to alleviate the burden of families.
• Policies support with resource and care provision need to be strengthened to meet the needs of patients and families.

1. INTRODUCTION

Living with Amyotrophic lateral sclerosis (ALS) incurs physical, psychosocial and existential issues (Ozanne et al., 2013 ). Chinese patients with ALS face even more daunting challenges. Patients and their families are under greater economic pressure than other countries due to China's inadequate financial support for health and social services (Gong et al., 2016 ). Only the ‘Riluzole Tablets’ is included in the medical insurance reimbursement list. Meanwhile, the multidisciplinary clinic, the standard of care for patients with ALS in developed countries (Stephens et al., 2016 ), is so few in China. Hence the chance of accessing the available treatment and palliative care is limited. A cross‐cultural study has also reported that the different attitudes of patients with ALS towards therapeutic decisions, the acceptance of death and the use of life support are grounded in cultural and historical traditions (Andersen et al., 2018 ). Chinese unique cultural philosophy might impact patients’ perception of physical and emotional states and how they make sense of disease (Thomas et al., 2018 ). These aspects make Chinese patients with ALS different from those in other countries. Therefore, it is essential to understand Chinese patients’ lived experiences to guide care provision.

1.1. Background

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease that predominantly involves upper and lower motor neurons (Morris, 2015 ). ALS is rare and has an incidence of about 1–7 in 100,000 population in developed countries (Thomas et al., 2018 ). The disease clinically manifests itself as muscle weakness, atrophy and spasticity in the limb or bulbar muscles and hastily progresses to more body regions with no remission period (Robberecht & Philips 2013 ). In the late stages of the disease, people with ALS develop into a ‘totally locked‐in’ state (TLS) where only residual muscular movement is possible, with the intellect and the personality usually remaining unimpaired. A majority of them die of respiratory failure within 3–5 years from symptoms onset (Hardiman et al., 2011 ).

Since ALS is incurable, its treatments mainly focus on improving and sustaining the quality of life (QoL) (Prell et al., 2019 ). Previous studies have revealed that psychological well‐being plays a prominent role in determining the QoL of people with ALS (Neudert et al., 2004 ). Patients with ALS develop a number of emotional issues, especially anxiety, fear and depression (Unglik et al., 2018 ). Physical disability and imminent death increase the likelihood of hopelessness and desire for physician‐assisted suicide (Paganoni et al., 2017 ). They are also more likely to feel burdensome, resulting in a discredited definition of themselves and a diminished will to live (Foley et al., 2016 ). Of note, most research on the psychological well‐being of people with ALS was quantitative. However, these studies were limited in identifying specific psychological difficulties with ALS because the measures they used were not specifically designed for ALS (Mistry & Simpson, 2013 ).

Available qualitative research to date is limited, although it has been recommended as the most appropriate way of assessing mental concerns in ALS (Thomas et al., 2018 ). Some research into patients’ narratives with ALS indicated shared experiences such as loss and forced change (Foley et al., 2014 ; Locock et al., 2009 ; Mistry & Simpson, 2013 ). Studies have qualitatively explored the relationship between patients and significant others, especially with family caregivers (Cipolletta & Amicucci, 2015 ; Locock & Brown, 2010 ). Interpersonal relationships may either threaten or help establish patients’ existential meaning (Ando et al., 2019 ).

There is growing evidence of ALS in China, but little attention has been directed to how they experience the illness (Liu et al., 2018 ). Our aim with this study was to take the first step in trying to investigate the lived and managed experience of patients with ALS in mainland China.

2.1. Study design

A phenomenological qualitative research design involving in‐depth semi‐structured interviews was chosen. It is particularly suitable to explore the complex phenomenon and the essence and meaning to those who experience it (Holloway & Galvin, 2016 ). Colaizzi's method was employed for data analysis, which provides detailed and sequential steps that increase the results’ reliability and dependability (Wirihana et al., 2018 ). The Consolidated Criteria for Reporting Qualitative Research (COREQ), a 32‐item checklist, was used as a guideline to secure accurate and complete reporting of the study (Tong et al., 2007 ), see Supplementary File 1 .

2.2. Participant

This study recruited those diagnosed with ALS and treated in the Neurology Department of a tertiary hospital in Wuhan, China, from February to July 2018. Patients with severe respiratory insufficiency or impairments in verbal communication were excluded. A purposive sampling method was conducted to ensure the sample diversity in age, gender, function state and course of ALS. The principle for determining the sample size was practised as follows: after data saturation was reached, two more patients were interviewed. If there were no new topic emerging, further recruitment would be terminated.

The second author of this study was an experienced nurse in charge of clinical nursing education in the neurology department currently. For potential participants, she told them about the purpose and methods for this research and invited them to participate. If they were interested in participating, they would receive written materials with details of the study and additional verbal information before the interviews. In total, 24 patients were invited for an interview, and four refused to participate. Two patients did not want to spend time on this study. One said it was hard for him to talk about feelings, and one did not report a reason for the refusal. Finally, 20 participants were recruited for the study.

2.3. Data collection

Data were collected by in‐depth semi‐structured interviews. Prior to the interviews, participants were required to sign informed consent. Those who agreed to participate were interviewed face to face in a private room of the neurology department. Interviews were conducted by the second author of this study, who had been trained in conducting interviews. The researcher was not known to the participants before interviewing. A semi‐structured outline was developed with several open‐ended questions exploring informative answers containing the situations, thoughts and emotions on ALS experience (See supplementary File 2 ). Each participant was interviewed once. All conversations began with the same question: ‘Could you please talk about your experience after diagnosis of ALS?’. Their responses were clarified with questions like ‘what do you mean by saying that?’. Considering the decline of communication ability, participants could express themselves with paper or caregivers’ help. Noting the impact caregivers may have on an open conversation with a participant, their presence was recorded in the finding section. Each interview lasted 30 to 60 min. At the end of the interviews, each participant would receive a little gift as a reward.

All interviews were audio‐recorded with patients’ consent and transcribed verbatim within 24 h by the second author. The transcripts were then sent back to the interviewees to affirm accuracy. The interviews were in Chinese, and the quotes in this paper were translated into English by the first author and checked by all authors.

2.4. Data analysis

Colaizzi's method was used to analyse the data with seven steps: (1) Read the transcript to be familiar with the data; (2) Identify and extract significant statements and phrases; (3) Formulate meanings; (4) Group all formulated meanings into categories, clusters of themes and themes; (5) Define all emergent themes into an exhaustive description; (6) Describe the fundamental structure of the phenomenon; (7) Return the findings to participants to seek verification (Wirihana et al., 2018 ). All data and field notes obtained during the interviews were entered into NVivo 10 to support qualitative data analysis.

The first author and the second author performed the initial analysis independently. After that, all co‐researchers discussed whether the analysis results were appropriate according to the transcripts and note‐comparing. If the authors had different opinions, the discussion continued until all authors achieved consensus.

2.5. Ethical consideration

This study received approval from the Local Ethics Committee prior to the commencement of the research. Participants received oral and written information about the study and were assured of legal data storage and anonymity. All participants signed informed consent and were aware of the rights to withdraw their consent at any time without any penalty. The researchers promised not to use any personal identifier in research reports or publications. During data analysis, each participant was coded to assure anonymity. Any information that might potentially identify individuals, third parties or institutions was masked.

In total, twenty participants, thirteen men and seven women were interviewed in this study. The age of participants ranged between 28–72 years of age (median = 51 years) and had been diagnosed with ALS in the previous 6–60 months (median = 14 months). The personal characteristics of the participants are listed in Table ​ Table1 1 .

Interview information and characteristics of the participants

Three themes and eight subthemes were obtained through the phenomenological qualitative study regarding the patients’ living experience with ALS. These themes and subthemes are summarised in Table ​ Table2 2 and illustrated by text and quotations below.

Identified themes and subthemes

3.1. Life countdown: ‘My body was frozen’

After being first diagnosed with ALS, the countdown of life began. Impacts of ALS on patients were grouped into two subthemes: ‘body out of control’ and ‘inward suffering’.

3.1.1. Body out of control

Participants perceived their bodies started to get out of control after suffering from the illness. They walked strangely, got thinner or drooled unconsciously. These changes had a profound impact on their overall self‐perception. They felt embarrassed and ashamed to communicate with others. Some tried to estrange themselves from circles of relationships.

"Being sick always makes me drool like a baby. Every day, I have to wipe off my saliva. When people came to my home, I often wondered if they thought I looked like a freak. I only wanted to stay alone. It is embarrassing." (P8)

As muscle weakness and stiffness kept progressing, participants felt as if their bodies were frozen. Since most of them were clear in mind, some described that they could do nothing but watch themselves die.

"My fingers stiffen up. My body seems to be frozen. The feeling is hard to express in words. I feel like I'm a robot rusting slowly and destroyed by illness and pain." (P4)

3.1.2. Inward suffering

It is too hard for individuals to accept the diagnosis of ALS. They went into denial and believed they were misdiagnosed to make themselves feel better. Some started to question their beliefs as they felt they had done well in life.

"I have never heard of this [ALS] before. How could I get such a strange disease? I hope my doctor is wrong. Doctors are not gods. There must be some moments when they make a mistake." (P1) "Since I was a child, my parents always taught me that virtue has its reward, evil has its retribution. I had never done anything bad, but why did this happen to me? I don't know what to believe anymore [Silence]." (P17)

Patients invariably associated ALS with death and dying. As a result, words such as ‘fear’, ‘desperate’ and ‘hopeless’’ were most frequently mentioned during the interviews. Some participants described themselves in a state of ambivalence. While desiring to be cured, they often had suicidal thoughts as the disease progresses.

"I always dreamed that I was cured. But when I woke up, I found myself still in bed with stiff limbs. It is so desperate...... Sometimes I want to end it all." (Accompanied) (P12)

3.2. Family self‐help: ‘We look after each other's back’

Family as an independent system plays a crucial supportive role. Facing the plight, the patients and their family members depended on each other to help themselves.

3.2.1. Family warmth and hardship

The family provided the greatest support to patients. All the participants’ caregivers were their spouses or parents. They shouldered more responsibilities, such as caring for the patients, raising children and earning money to support the family. Due to the illness, patients and their families spent more time with each other than before. Some patients stated that their families got closer together. The family warmth encouraged patients to be stronger to face the disease and actively involved in their treatment.

"When my grandchildren kept themselves by my side, I always felt very happy. Their smiles act like a magic potion that soothes me a lot." (Accompanied) (P12) "With the support of my family, I became braver. No matter what the final result is. I think my life is meaningful." (P10)

However, many patients described that there is a lack of communication between them and their families. They kept the internal suffering to themselves and avoided talking about the disease with families to reduce caregivers’ psychological pressure.

"She[wife] cried a lot even when I didn't say anything. How dare I tell her my feelings? I had to keep those to myself." (P8)

Besides, being cared for by family members caused emotional problems. Many participants lived with a pervasive sense of guilt, as they perceived themselves as incurring a massive burden on their family, especially those cared for by their elderly parents. Some described a sense of anxiety and helplessness since they worried about whether they have been properly cared for.

"My mom is 70 now. She had a wea、k heart but still had to take care of me. I am such an unfilial son." (P16)

3.2.2. Supporting the supporter

In our study, patients converted the feelings of guilt into strong senses of family responsibility. They did their part within their power to buttress their families physically and psychologically. On the one hand, strategies were employed to reduce the physical burden on caregivers, for instance, minimising needs and striving to do things they were capable of in daily life. Meanwhile, participants showed emotional support to their families. They reassured the family and became sensitive enough to capture slight emotional fluctuations in caregivers.

"I'm afraid she [wife] cannot handle this, and I worry about her health. So, I do whatever I can do, like wiping the table, to ease her burden." (P3) "My wife took care of me all the time. Sometimes, even though she was laughing, I could feel she was under great pressure. I also wanted to take care of her emotional health." (P13)

3.3. Reconstruction of life: ‘What was the meaning of my life?’

Under the threat of illness and death, patients started to pursue the meaning of life and reconstruct their lives messed up by the disease.

3.3.1. Learning to accept

Learning to accept reality and death was the most crucial first step that patients had to take to embark on a journey of meaning‐making. By confronting reality and death, patients stated that they could reconsider their value and rediscover the meaning of life.

Many patients took a downward comparison approach to accept reality. Participants compared themselves with those in worse circumstances, thus shifting their identities from ‘victims’ to ‘survivors’.

"I felt better when I saw some young patients in the hospital. I am 68 years old now, much older than them. If I want to live to age 70, there are only two years ahead. However, if a 20‐year‐old patient wanted to make it to age 70, it would be much harder." (P19)

Influenced by Chinese traditional culture, some patients believed that thinking about life was more meaningful than death.

"It is useless to think about death now. What is more important now is living a good life for the rest of the day, and not disappointing those I love." (Accompanied) (P17)

3.3.2. Rebuilding self‐worth

Participants rebuilt their self‐worth to make the meaning of life. They invested their energies in activities to feel valued and needed. Many patients kept going to work or tried to do easy housework. Some expressed a strong desire to get involved in helping others. One participant shared his experience with ALS in social software, hoping to inspire and encourage those in the same plight as them. Another participant longed for organ donation as a continuation of life.

"Last year, an old woman told me to look after myself. I think she is right. I can walk without any aid. Why should I bother others? Do some little things, I will feel more valuable." (P8)

3.3.3. Resetting the priority list

The meaning of life can be found by resetting the priority list. Having to live with the disease, the patients saw significant changes in their views of money and fame. Individuals once spent a great deal of time on making money. But now, spending time with family has become the most important thing for them.

"I started to recognize how important life is. I used to be busy saving money for children's education. Now we [He and his wife] can just sit and talk, heart to heart. Her [wife] support motivated me to receive treatment." (P13)

For some younger participants involved in child‐rearing, their children's growth and future became the things they were concerned about most. Their children were spiritual support for them to struggle to live longer.

"My little girl is only three years old. I want to be alive and watch her grow up. So, take every remaining day seriously, and my life could be more meaningful." (P18)

3.3.4. Living in the moment

Living in the moment was a crucial aspect of individuals in pursuing the meaning of their life. It meant narrowing the attention to the present and making the most of the days remaining. Patients chose to live in the moment to liberate themselves from the disease temporarily and reduce worries to a manageable level. They enjoyed things more sensitively and embraced every little moment of happiness.

"Instead of being sad all the time, it is better to look at the scenery outside. Listen to the birds sing, feel the leaves rustling in the wind, and watch the rose blossoms. All of these make me happy." (P10)

4. DISCUSSION

This study aimed to investigate the lived and managed experience of patients with ALS in China. Our result demonstrated that the initial experience after diagnosis of ALS was characterised by feeling out of control for the body, desperation for prognosis and guilt to family. Under the threat of death, those negative feelings transformed into an active exploration of the relationship between self and others. Individuals became highly dependent on the family and also played a supportive role in the family. Moreover, their perspective of life was transferred from a more external view to a more in‐depth view, such positive conduct as resetting priorities in life, re‐evaluation of personal values and seeking the meaning in life took place (Helgeson et al., 2006 ).

Participants lost control of their bodies and experienced many emotional issues, such as depression, fear and guilt reported in previous research. (Averill et al., 2007 ; Benbrika et al., 2019 ; Unglik et al., 2018 ). It was worth noting that suffering from ALS led to a questioning of faith, especially for those who were morally strict with themselves and eliminated immoral behaviour. It might be because most people in China believe in Karma, emphasising that good acts will have positive consequences, whereas evil deeds will produce negative results (Xu, 2018 ). Previous research has revealed that personal faith helps people avoid despair and make sense of what is happening to them (O"Brien & Clark, 2015 ). Therefore, healthcare providers should pay attention to the emotional condition of patients, especially their faith and spiritual needs, in addition to their physical condition.

We found a family self‐help model formed, that is family members cared for patients, and patients supported supporters. In this study, family support for patients helped them face reality and actively seek the meaning of life, and the patients provided physiological and psychological support to their families to alleviate their sense of guilt and the family burden. Studies on family caregiving in other life‐limiting illnesses (e.g., HIV and multiple sclerosis) indicated similar family relationships (Payne & McPherson, 2010 ; Uphold et al., 2012 ). Notably, the family self‐help model was reported in all participants’ families, which might arise due to the inadequacy of the Chinese Medical Insurance System and limited existing medical facilities for the rare disease. Moreover, the Chinese cultural concept of familism stressing solidarity and interdependence might also promote the universality of family self‐help. Nevertheless, our study reported some limitations of this family care model, such as poor communication between patients and families, a strong sense of self‐burden of patients and family caregivers’ lack of professional care knowledge (Ando et al., 2019 ; Foley et al., 2016 ). Healthcare providers, especially in regions with imperfect healthcare systems, could attach importance to the family self‐help model to support patients. Interventions tailor‐made to patient and family's needs may improve the experience of patients and families with ALS.

Interestingly, our result reported some differences in patients’ feelings of being cared for by family caregivers. The aged patients reported higher subjective well‐being, while those cared for by aged parents exhibited stronger guilt, anxiety and out of control. Filial piety, seen as ‘the top of all virtues’ in Chinese traditional culture, may contribute to the difference. The elderly had little psychologically burdened of being cared for, as it was conventional for children to look after their parents. Moreover, they showed high happiness since spending more time with their families (Lee, 2009 ). On the contrary, adult patients showed more guilt, as being cared for by their parents physically and financially was not consistent with traditional Chinese social expectations(Chen et al., 2016 ). Besides, they feel anxious about not being adequately cared for because of their elderly parents’ lack of physical strength and professional care knowledge. It suggests that attention should be paid to the inner experience of patients of different ages, which could provide healthcare providers with guidance in personalised care.

Under the threats of death, patients were motivated to reappraise their self‐value and pursue the meaning of life. Research has emphasised that meaning is the purpose of life, and it can be found even in the worst situations (Metz, 2013 ). In this study, individuals’ meaning of life was sought by learning to accept, rebuilding self‐worth, resetting priority list and living in the moment. The result is supported by numerous previous research (Boston et al., 2011 ; Foley et al., 2016 ; Ozanne et al., 2013 ). Meaning's positive influence on experience indicates that it is vital for healthcare providers to help people with ALS find an element of meaning and purpose in their lives, which may improve their experience with ALS.

Notably, participants seldom talked about death. Lin (Lin, 2003 ) believed that the Chinese avoiding thinking of death was a phenomenon of culture. In China, people's view of life and death is the most affected by Confucianism, which attaches great importance to human life. Nevertheless, as some scholars raised, Confucianism lacked attention to death (Chen et al., 2017 ). It is verified in this study. Participants considered living a meaningful life in the remaining days but avoided talking about death. Despite the optimistic life attitude of participants being beneficial for patients to pursue life's meaning, their neglect of death resulted in lacking sufficient understanding of the content and significance of ‘good death’. Furthermore, the phenomenon is more severe since the slow and lack of systematic development of death education in China(Haishan et al., 2015 ). Therefore, healthcare providers should strengthen death education among Chinese patients with ALS, guide them to think about ‘good death’ and establish a correct attitude towards death so that they can face death fearlessly.

Several limitations of our work should be noted. Firstly, twenty participants were recruited solely from a hospital located in central China and could hardly represent patients from other regions, who may experience things differently. Secondly, we only interviewed each participant once and failed to capture their experiences over time. Consequently, additional longitudinal research is needed to gain a comprehensive appreciation of patients’ lived experiences from different regions and during various stages of ALS. Thirdly, some participants attended the interviews with their caregivers. Even though caregivers could help the participants understand the interviews, it was recognised that their presence could potentially influence participants’ narratives.

5. CONCLUSION

In conclusion, since living with ALS was a painful journey, patients and their families strived to form a family self‐help model. In this model, mutual support between patients and their families has a positive impact on their experience, and patients are prompted to turn from negative mentalities to search for meaning in life actively. Healthcare providers should pay attention to and utilise this model in providing health services and actively promote the formation of family self‐help models to alleviate pressure on medical resources. In addition, this study also emphasises the need to support patients to live well until they die and plan for elements that contribute to enabling a good death.

6. RELEVANCE TO CLINICAL PRACTICE

Families play an important role in supporting patients with ALS. Healthcare providers should actively promote the formation of family self‐help model. For patients with ALS, healthcare providers need to encourage them to play a supportive role in the family; For family caregivers, more care support and professional care knowledge guidance need to be provided to relieve their burden. In addition, social welfare systems and community healthcare systems should be strengthened to meet the needs of patients and caregivers. It is also indispensable to strengthen death education and encourage patients and their families to communicate about the disease and death actively.

CONFLICT OF INTEREST

The authors have no conflict of interest to declare.

AUTHOR CONTRIBUTIONS

Conceptualisation, formal analysis and writing – original draft: M‐MY. Methodology and Investigation: XP. Supervision: T‐YZ. Validation and data curation: M‐L‐YW. Formal analysis: YC. Writing – review and editing: KZ. Writing – review and editing: X‐JW.

Supporting information

Supplementary Material1

Supplementary Material2

ACKNOWLEDGEMENTS

We are indebted to the head nurses who provided assistance in the data collection and to all participants for their contribution to the study.

This study was funded by Department of Nursing, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology.

DATA AVAILABILITY STATEMENT

• Andersen, P. M. , Kuzma‐Kozakiewicz, M. , Keller, J. , Aho‐Oezhan, H. E. A. , Ciecwierska, K. , Szejko, N. , Vázquez, C. , Böhm, S. , Badura‐Lotter, G. , Meyer, T. , Petri, S. , Linse, K. , Hermann, A. , Semb, O. , Stenberg, E. , Nackberg, S. , Dorst, J. , Uttner, I. , Häggström, A.‐C. , … Lulé, D. (2018). Therapeutic decisions in ALS patients: Cross‐cultural differences and clinical implications . Journal of Neurology , 265 ( 7 ), 1600–1606. 10.1007/s00415-018-8861-4 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Ando, H. , Cousins, R. , & Young, C. A. (2019). Exploring and addressing ‘Concerns’ for significant others to extend the understanding of quality of life with amyotrophic lateral sclerosis: A qualitative study . Journal of Central Nervous System Disease , 11 , 117957351985936. 10.1177/1179573519859360 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Averill, A. J. , Kasarskis, E. J. , & Segerstrom, S. C. (2007). Psychological health in patients with amyotrophic lateral sclerosis . Amyotroph Lateral Scler , 8 ( 4 ), 243–254. 10.1080/17482960701374643 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Benbrika, S. , Desgranges, B. , Eustache, F. , & Viader, F. (2019). Cognitive, emotional and psychological manifestations in amyotrophic lateral sclerosis at baseline and overtime: a review . Frontiers in Neuroscience , 13 , 951. 10.3389/fnins.2019.00951 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Boston, P. , Bruce, A. , & Schreiber, R. (2011). Existential suffering in the palliative care setting: an integrated literature review . Journal of Pain and Symptom Management , 41 ( 3 ), 604–618. 10.1016/j.jpainsymman.2010.05.010 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Chen, Q. , Flaherty, J. H. , Guo, J. H. , Zhou, Y. , Zhang, X. M. , & Hu, X. Y. (2017). Attitudes of older Chinese patients toward death and dying . Journal of Palliative Medicine , 20 ( 12 ), 1389–1394. 10.1089/jpm.2017.0014 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Chen, W.‐W. , Wu, C.‐W. , & Yeh, K.‐H. (2016). How parenting and filial piety influence happiness, parent–child relationships and quality of family life in Taiwanese adult children . Journal of Family Studies , 22 ( 1 ), 80–96. 10.1080/13229400.2015.1027154 [ CrossRef ] [ Google Scholar ]
• Cipolletta, S. , & Amicucci, L. (2015). The family experience of living with a person with amyotrophic lateral sclerosis: a qualitative study . International Journal of Psychology , 50 ( 4 ), 288–294. 10.1002/ijop.12085 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Foley, G. , Timonen, V. , & Hardiman, O. (2014). Exerting control and adapting to loss in amyotrophic lateral sclerosis . Social Science and Medicine , 101 , 113–119. 10.1016/j.socscimed.2013.11.003 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Foley, G. , Timonen, V. , & Hardiman, O. (2016). "I hate being a burden": The patient perspective on carer burden in amyotrophic lateral sclerosis . Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration , 17 ( 5–6 ), 351–357. 10.3109/21678421.2016.1143512 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Gong, S. , Wang, Y. , Pan, X. , Zhang, L. , Huang, R. , Chen, X. , Hu, J. , Xu, Y. I. , & Jin, S. I. (2016). The availability and affordability of orphan drugs for rare diseases in China . Orphanet Journal of Rare Diseases , 11 ( 1 ), 1–12. 10.1186/s13023-016-0392-4 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Haishan, H. , Hongjuan, L. , Tieying, Z. , & Xuemei, P. (2015). Preference of Chinese general public and healthcare providers for a good death . Nursing Ethics , 22 ( 2 ), 217–227. 10.1177/0969733014524760 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Hardiman, O. , Van Den Berg, L. H. , & Kiernan, M. C. (2011). Clinical diagnosis and management of amyotrophic lateral sclerosis . Nature Reviews Neurology , 7 ( 11 ), 639–649. 10.1038/nrneurol.2011.153 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Helgeson, V. S. , Reynolds, K. A. , & Tomich, P. L. (2006). A meta‐analytic review of benefit finding and growth . Journal of Consulting and Clinical Psychology , 74 ( 5 ), 797–816. 10.1037/0022-006X.74.5.797 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Holloway, I. , & Galvin, K. (2016). Qualitative Research in nursing and healthcare , (4th ed.). UK: John Wiley & Sons. [ Google Scholar ]
• Lee, S. K. (2009). East Asian attitudes toward death—a search for the ways to help East Asian elderly dying in contemporary America . The Permanente Journal , 13 ( 3 ), 55–60. 10.7812/tpp/08-068 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Lin, A.‐ H.‐M.‐ H. (2003). Factors related to attitudes toward death among American and Chinese older adults . Omega (Westpot) , 47 ( 1 ), 3–23. 10.2190/G66E-F3UD-6RHX-6QQG [ CrossRef ] [ Google Scholar ]
• Liu, X. , He, J. , Gao, F.‐B. , Gitler, A. D. , & Fan, D. (2018). The epidemiology and genetics of Amyotrophic lateral sclerosis in China . Brain Research , 1693 ( Pt A ), 121–126. 10.1016/j.brainres.2018.02.035 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Locock, L. , & Brown, J. B. (2010). ‘ All in the same boat’? Patient and carer attitudes to peer support and social comparison in motor neurone disease (MND) . Social Science and Medicine , 71 ( 8 ), 1498–1505. 10.1016/j.socscimed.2010.06.043 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Locock, L. , Ziebland, S. , & Dumelow, C. (2009). Biographical disruption, abruption and repair in the context of motor neurone disease . Sociology of Health & Illness , 31 ( 7 ), 1043–1058. 10.1111/j.1467-9566.2009.01176.x [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Metz, T. (2013). Meaning in life . Oxford University Press. [ Google Scholar ]
• Mistry, K. , & Simpson, J. (2013). Exploring the transitional process from receiving a diagnosis to living with motor neurone disease . Psychology and Health , 28 ( 8 ), 939–953. 10.1080/08870446.2013.770513 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Morris, J. (2015). Amyotrophic lateral sclerosis (ALS) and related motor neuron diseases: an overview . The Neurodiagnostic Journal , 55 ( 3 ), 180–194. 10.1080/21646821.2015.1075181 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Neudert, C. , Wasner, M. , & Borasio, G. D. (2004). Individual quality of life is not correlated with health‐related quality of life or physical function in patients with amyotrophic lateral sclerosis . Journal of Palliative Medicine , 7 ( 4 ), 551–557. 10.1089/jpm.2004.7.551 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• O'brien, M. R. , & Clark, D. (2015). Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease? Palliat Support Care , 13 ( 6 ), 1603–1614. 10.1017/S1478951515000097 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Ozanne, A. O. , Graneheim, U. H. , & Strang, S. (2013). Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients . Journal of Clinical Nursing , 22 ( 15–16 ), 2141–2149. 10.1111/jocn.12071 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Paganoni, S. , McDonnell, E. , Schoenfeld, D. , Yu, H. , Deng, J. , Atassi, H. , Sherman, A. , Yerramilli Rao, P. , Cudkowicz, M. , & Atassi, N. (2017). Functional decline is associated with hopelessness in amyotrophic lateral sclerosis (ALS) . Journal of Neurology & Neurophysiology , 8 ( 2 ), 423. 10.4172/2155-9562.1000423 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Payne, D. , & McPherson, K. M. (2010). Becoming mothers. Multiple sclerosis and motherhood: A qualitative study . Disability and Rehabilitation , 32 ( 8 ), 629–638. 10.3109/09638280903204708 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Prell, T. , Gaur, N. , Stubendorff, B. , Rödiger, A. , Witte, O. W. , & Grosskreutz, J. (2019). Disease progression impacts health‐related quality of life in amyotrophic lateral sclerosis . Journal of the Neurological Sciences , 397 , 92–95. 10.1016/j.jns.2018.12.035 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Robberecht, W. , & Philips, T. (2013). The changing scene of amyotrophic lateral sclerosis . Nature Reviews Neuroscience , 14 ( 4 ), 248–264. 10.1038/nrn3430 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Stephens, H. E. , Young, J. , Felgoise, S. H. , & Simmons, Z. (2016). A qualitative study of multidisciplinary ALS clinic use in the United States . Amyotroph Lateral Scler and Frontotemporal Degener , 17 ( 1–2 ), 55–61. 10.3109/21678421.2015.1069851 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Thomas, P. T. , Warrier, M. G. , Sadasivan, A. , Balasubramanium, B. , Preethish‐kumar, V. , Nashi, S. , Polavarapu, K. , Krishna, G. , Vengalil, S. , Rajaram, P. , & Nalini, A. (2018). Caregiver burden and quality of life of patients with amyotrophic lateral sclerosis in India . Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration , 19 ( 7–8 ), 606–610. 10.1080/21678421.2018.1482353 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Tong, A. , Sainsbury, P. , & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32‐item checklist for interviews and focus groups . Int J Qual Health Care , 19 ( 6 ), 349–357. 10.1093/intqhc/mzm042. [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Unglik, J. , Bungener, C. , Delgadillo, D. , Salachas, F. , Pradat, P. F. , Bruneteau, G. , Lenglet, T. , Le Forestier, N. , Couratier, P. , Vacher, Y. , & Lacomblez, L. (2018). Emotional feeling in patients suffering from amyotrophic lateral sclerosis . Gériatrie et Psychologie Neuropsychiatrie du Viellissement , 16 ( 4 ), 414–422. 10.1684/pnv.2018.0762 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Uphold, C. R. , Shehan, C. L. , Bender, J. M. , & Bender, B. S. (2012). Emotional bonds and social support exchange between men living with HIV infection and their mothers . American Journal of Men's Health , 6 ( 2 ), 97–107. 10.1177/1557988311413118 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Wirihana, L. , Welch, A. , Williamson, M. , Christensen, M. , Bakon, S. , & Craft, J. (2018). Using Colaizzi’s method of data analysis to explore the experiences of nurse academics teaching on satellite campuses . Nurse Researcher , 25 ( 4 ), 30–34. 10.7748/nr.2018.e1516 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Xu, J. (2018). Buddhism‐as‐a‐meaning‐system for coping with late‐life stress: A conceptual framework . Aging & Mental Health , 22 ( 1 ), 100–108. 10.1080/13607863.2016.1227767 [ PubMed ] [ CrossRef ] [ Google Scholar ]

Essays About Life-changing Experiences: 5 Examples

Discover our guide for writing essays about life-changing experiences that combine three different elements: narrative, description, and self-reflection. 

Each of us has gone through life-changing experiences that shaped us into the individuals we are today. Because of how powerful they are, these events make for fascinating topics in writing. This subject doesn’t only let us tell our life stories, and it also pushes us to evaluate our behavior and reflect on why an incident happened.

Attract your readers by creating an excellent introduction and choosing a unique or exciting encounter. Paint a picture of the events that describe your experience vividly and finish with a strong conclusion.

5 Essay Examples

1. long essay on experience that changed my life by prasanna, 2. life-changing events: personal experience by anonymous on studycorgi.com, 3. my example of a life-changing experience by anonymous on gradesfixer.com, 4. life-changing experience: death essay by writer annie, 5. a life-changing experience during the holiday season by anonymous on studymoose.com, 1. life-changing experience: defined, 2. the experience that changed my life, 3. life-changing events and how they impact lives, 4. everyday events that change a person’s life, 5. the person who change my life, 6. books or movies that changed my life, 7. a life-changing quote.

“Experiences can be good and sometimes terrible that results in a positive or negative impact on one’s life. Life is full of many unexpected challenges and unknown turning points that will come along any time. People must learn and grow from every experience that they go through in life rather than losing yourself.”

In this essay, Prasanna discusses her father’s death as her most challenging life-changing experience. She was cheerful, immature, and carefree when her father was still alive. However, when her father left, she became the decision-maker of their family because her mother was unable to.

Prasanna mentions that she lost not only a father but also a friend, motivator, and mentor. That sad and unexpected experience turned her into an introverted, mature, and responsible head of the family. Ultimately, she thanks her father for making her a better person, and because of the devastating incident, she realizes who she can trust and how she should handle the real world. You might also be interested in these essays about choice .

“In life, certain experiences present challenges that change the way people relate to themselves and their families. Certain life events mark life-changing moments that alter lives either positively or negatively. It matters how people handle their relationships at such critical moments.”

This essay contains two life events that helped the author become a better person. These events taught them to trust and appreciate people, be responsible, and value family. The first event is when their best friend passes away, leading to stress, loss of appetite, and depression. The second circumstance happened when the author postponed their studies because they were afraid to grow up and be accountable for their decisions and actions.

The writer’s family showed them love, support, and understanding through these events. These events changed their behavior, attitude, and perspective on life and guided them to strengthen family relationships.

For help picking your next essay topic, check out our 20 engaging essay topics about family .

“I thought it was awkward because he looked and acted very professional. In that moment I thought to myself, ‘this person is going to have a great impact in my life!’. I was very curious to meet him and get a chance to show him my personality.”

This essay proves that you should always believe in yourself and not be afraid to try something new. The author recalls when they had many problems and met an extraordinary person who changed their life. 

When they were in sixth grade, the writer had life issues that caused them to be anxious about any future endeavor. The author then says they don’t usually open up to teachers because they fear their reactions. Then they met Mr. Salazar, a mentor who respects and values them, and the writer considers him their best friend.

“When the funeral was over and he was laid to rest, I had a feeling I can’t even describe. It was almost an empty feeling. I knew I had lost someone that could never be replaced.”

Annie never thought that she’d go through a life-changing experience until the sudden death of her father. Her thoughts and feelings are all over the place, and she has many unanswered questions. She says that although she will never wish for anyone to experience the same. However, her father’s passing improved her life in some ways.

Her mother remarried and introduced a new father figure, who was very kind to her. Living with her stepdad allowed her to explore and do things she thought she couldn’t. Annie still mourns the loss of her birth father, but she is also grateful to have a stepdad she can lean on. She gradually accepts that she can’t bring her birth father back.

“This story as a whole has really changed me and made me an even better person in life, I’m so thankful that this happened to me because now I have a greater appreciation for the little things in life.”

The essay shows how a simple interaction on a cold day in December can completely change a person’s view on life. It starts with the writer being asked a small favor of an older man with Alzheimer’s disease to help him find his car. This experience teaches the writer to be more observant and appreciative of the things they have. The author was inspired to spend more time with loved ones, especially their grandfather, who also has Alzheimer’s disease, as they learned never to take anything for granted.

7 Prompts for Essays About Life-changing Experiences

Everyone has their definition of a life-changing experience. But in general, it is an event or series of events profoundly altering a person’s thinking, feelings, and behavior. Use this prompt to explain your understanding of the topic and discuss how a simple action, decision, or encounter can change someone’s life. You might also be interested in these essays about yourself .

For this prompt, choose a specific memory that made you re-evaluate your views, values, and morals. Then, discuss the impact of this event on your life. For example, you can discuss losing a loved one, moving to another country, or starting a new school. Your conclusion must contain the main lessons you learned from the experience and how it can help the readers.

Various positive and negative life-changing experiences happen anytime and anywhere. Sometimes, you don’t notice them until they substantially disturb your everyday life. 

To begin your essay, interview people and ask about a momentous event that happened to them and how it influenced their way of living. Then, pick the most potent life-changing experience shared. Talk about what you’d do if you were in the same situation.

Some life-changing events include common things such as marriage, parenthood, divorce, job loss, and death. Research and discuss the most common experiences that transform a person’s life. Include real-life situations and any personal encounters for an intriguing essay.

It’s normal to meet other people, but connecting with someone who will significantly impact your life is a blessing. Use this prompt to discuss that particular person, such as a parent, close friend, or romantic partner. Share who they are and how you met them, and discuss what they did or said that made a big difference in your life. 

Movies like “The Truman Show” help change your viewpoint in life. They open our minds and provide ideas for dealing with our struggles. Share how you reached an epiphany by reading a book or watching a movie. Include if it’s because of a particular dialogue, character action, or scenes you can relate to.

While others use inspirational quotes for comfort and to avoid negative thinking, some find a quote that gives them the courage to make drastic changes to better their lives. For this prompt, search for well-known personalities who discovered a quote that motivated them to turn their life around.  Essay Tip: When editing for grammar, we also recommend spending time and effort to improve the readability score of your essay before publishing or submitting it.

101 Essays That Will Change The Way You Think

Brianna wiest.

450 pages, Kindle Edition

First published November 14, 2016

About the author

Ratings & Reviews

What do you think? Rate this book Write a Review

Friends & Following

Community reviews.

"In a sense, the notion that thoughts create reality is more than just a nice idea; it’s also a fact of evolution. It was because of language and thought that we could create a world within our minds, and ultimately, it is because of language and thought that we have evolved into the society we have today—for better and for worse."

"The objectivity required to see the effects of present monoculture is very difficult to develop. Once you have so deeply accepted an idea as “truth” it doesn’t register as “cultural” or “subjective” anymore." "You think that to change your beliefs, you have to adopt a new line of thinking, rather than seek experiences that make that thinking self-evident. A belief is what you know to be true because experience has made it evident to you. If you want to change your life, change your beliefs. If you want to change your beliefs, go out and have experiences that make them real to you. Not the opposite way around" "You believe that creating your best life is a matter of deciding what you want and then going after it, but in reality, you are psychologically incapable1 of being able to predict what will make you happy. Your brain can only perceive what it’s known, so when you choose what you want for the future, you’re actually just recreating a solution or an ideal of the past. When things don’t work out the way you want them to, you think you’ve failed only because you didn’t re-create something you perceived as desirable. In reality, you likely created something better, but foreign, and your brain misinterpreted it as “bad” because of that. (Moral of the story: Living in the moment isn’t a lofty ideal reserved for the Zen and enlightened; it’s the only way to live a life that isn’t infiltrated with illusions. It’s the only thing your brain can actually comprehend."

"The most successful people in history—the ones many refer to as “geniuses” in their fields, masters of their crafts—had one thing in common, other than talent: Most adhered to rigid (and specific) routines...[T]he point is not what the routine consists of, but how steady and safe your subconscious mind is made through repetitive motions and expected outcomes."

What your big objective is. If you don’t know what you generally want to do with your precious, limited time here, you’re not going to do much of anything at all.

Join the discussion

Can't find what you're looking for.

Changes in Life: Positive and Negative Effects Essay

• To find inspiration for your paper and overcome writer’s block
• As a source of information (ensure proper referencing)
• As a template for you assignment

One of the invariable realities in life is that we are every in a state of change. These changes may be positive or negative but regardless of their nature, they are a fundamental part of our lives and it is important that we brace ourselves for them. In my life, I have had many changes; some of which have been inconsequential and other which have literally marked a turning point in my life.

In this paper, I shall narrate one of the significant changes in my life so as to highlight the fact that our perception of the change does at times determine whether the experience will be enjoyable or shall yield to discomfort and insecurity.

The particularly significant change in my life came about as a result of the announcement by my parents that we would be moving from Texas to New Mexico. What made this change so significant to me was that we had been living in the same neighborhood for as long as I could remember and the moving process felt like literally been uprooted.

As such, the change represented being taken away from what I was familiar with and loved to being placed in a foreign place which held a lot of uncertainty for me. My initial reaction was that of shock and distress at the prospect of what life in the new place would hold.

While I did enjoy visiting new places, I had never pictured myself moving from my home town on a permanent basis. In a bid to resist the change, I tried to reason my parents out of their decision. This was a futile attempt mostly because I had no solid reasons as to my opposition to our moving.

When it was finally clear to me that we were going to move regardless of my stance, I resigned myself to my fate and I recall wallowing in self pity as I expressed my predicament to my friends. However, one of my friends who happened to have come from New Mexico remarked that the place was actually enjoyable and held many a fascinating scenes for people.

In addition, he commented on the lovely neighborhoods and the tight knit communities that were there. His statements opened my eyes to the possibilities that the change in my life presented. I had been too indulged in the uncertainty and discomfort that would arise from the move that I had failed to consider the numerous possibilities that the change presented.

In my blindness, I had set out to avoid the change and failed to recognize the fascinating new possibilities. From this point on, I took up a more positive outlook and actually looked forward to the move.

On getting to New Mexico, I discovered that while everything was not as picturesque as my friend had suggested, the place was actually enjoyable and the community was not that different from the one in my previous neighborhood.

Due to the fact that I had braced myself for the change, I overlooked the negative aspects of my new home town and as a result of my optimism and high spirits, the change turned out to be one of the most memorable ones in my life.

From my experience, I learned that sometimes the changes in our lives are neutral and it is our perception that makes them either a joy to be looked forward to or a pain to be shunned. I also learnt that our fears of change in most cases spring from unfounded assumptions and our own prejudices.

As such, it is important for us to adopt an open minded and optimistic outlook as we undergo the numerous changes that life presents to us. By doing this, we will be increasing our chances of leading a satisfying and fulfilling life.

• Philosophy: Stoicism and Epicureanism
• Do People Choose What They Are Attracted To?
• "500 Days of Summer" by Mark Waters
• Alarm Fatigue in Health Centers
• The Human Prospect of Sociological Studies
• Military Career: Human Resource Certification
• Williams’ “The Glass Menagerie”: The Distraction of Illusions
• Self pity and personality
• "The Lovely Bones" by Alice Sebold
• Concepts of Truth in Mathematics, the Arts and Ethics
• Chicago (A-D)
• Chicago (N-B)

IvyPanda. (2018, May 9). Changes in Life: Positive and Negative Effects. https://ivypanda.com/essays/changes-in-life/

"Changes in Life: Positive and Negative Effects." IvyPanda , 9 May 2018, ivypanda.com/essays/changes-in-life/.

IvyPanda . (2018) 'Changes in Life: Positive and Negative Effects'. 9 May.

IvyPanda . 2018. "Changes in Life: Positive and Negative Effects." May 9, 2018. https://ivypanda.com/essays/changes-in-life/.

1. IvyPanda . "Changes in Life: Positive and Negative Effects." May 9, 2018. https://ivypanda.com/essays/changes-in-life/.

Bibliography

IvyPanda . "Changes in Life: Positive and Negative Effects." May 9, 2018. https://ivypanda.com/essays/changes-in-life/.

Advertisement

Where Tim Walz Stands on the Issues

As governor of Minnesota, he has enacted policies to secure abortion protections, provide free meals for schoolchildren, allow recreational marijuana and set renewable energy goals.

• Share full article

By Maggie Astor

• Published Aug. 6, 2024 Updated Aug. 17, 2024

Follow live updates on the 2024 election .

Gov. Tim Walz of Minnesota, the newly announced running mate to Vice President Kamala Harris, has worked with his state’s Democratic-controlled Legislature to enact an ambitious agenda of liberal policies: free college tuition for low-income students, free meals for schoolchildren, legal recreational marijuana and protections for transgender people.

“You don’t win elections to bank political capital,” Mr. Walz wrote last year about his approach to governing. “You win elections to burn political capital and improve lives.”

Republicans have slammed these policies as big-government liberalism and accused Mr. Walz of taking a hard left turn since he represented a politically divided district in Congress years ago.

Here is an overview of where Mr. Walz stands on some key issues.

Mr. Walz signed a bill last year that guaranteed Minnesotans a “fundamental right to make autonomous decisions” about reproductive health care on issues such as abortion, contraception and fertility treatments.

Abortion was already protected by a Minnesota Supreme Court decision, but the new law guarded against a future court reversing that precedent as the U.S. Supreme Court did with Roe v. Wade, and Mr. Walz said this year that he was also open to an amendment to the state’s Constitution that would codify abortion rights.

Another bill he signed legally shields patients, and their medical providers, if they receive an abortion in Minnesota after traveling from a state where abortion is banned.

We are having trouble retrieving the article content.

Please enable JavaScript in your browser settings.

Thank you for your patience while we verify access. If you are in Reader mode please exit and  log into  your Times account, or  subscribe  for all of The Times.

Thank you for your patience while we verify access.

Already a subscriber?  Log in .

Want all of The Times?  Subscribe .

ALS Assocation

• Understanding ALS
• Navigating ALS
• Resources and Support
• Get Involved

How Does ALS Affect My Life?

This is a personal statement read by Jennifer Bernay on the 2021 virtual hill day held with the ALS Association Northern Ohio Chapter, ALS patients, families and caregivers, and members of congress representing the state of Ohio. 

My mom was diagnosed with advanced stage sporadic ALS last November. She passed away approximately five months after receiving her diagnosis. I would like to begin by thanking our local ALS chapter for their support and guidance in helping us navigate her fight against ALS. What began over a year ago was her quest to find answers to her “floppy foot,” which was the initial symptom. With no family history of the disease, she spent over a year going to doctor appointments, actively searching for answers. She was determined to get her life back, visiting her PCP multiple times and seeking answers from several neurologists. She was told it was due to a nerve compression in her spine and untreated scoliosis, was scheduled for surgery, and she was hopeful. She endured the surgery and subsequent rehab isolated from her family, but, unbeknownst to her, she was entering a battle for which she was not given the ammunition. We need to do better. ALS patients deserve better. Due to her diagnosis with advanced stage ALS, she was unable to participate in clinical trials. Providing more funding to create more opportunities for clinical trials, including trials for all stages of ALS, is essential. My Mom would have participated in any type of trials that might stop or slow the progression of her condition, anything that could provide some kind of hope for her. My mom, like most ALS patients had been healthy her whole life, and she faced the news of her ALS diagnosis courageously. She fought to the best of her ability, at 79 years of age, against this brutal disease but also had to contend with the denial of services by Medicare that were so needed, such as PT, OT, speech, and respiratory therapy. CMS determined that she would not benefit from these services, although fiercely advocated by ALS specialists. She deserved every tool available to fight this disease and to be given the appropriate equipment in her arsenal. She was so much more than her member ID. Her mind remained unchanged during all of this as she gave witness to what ALS was doing to her body. She was unable to talk, hug her family, cry, or even scream over the frustration of it all. There is nothing more heartbreaking.  Our family was also faced with the costs of providing 24 hour care to meet the needs of her rapidly declining health. I applied for grants and assistance where I could, but the financial costs, even with her long-term care insurance, could not keep up with the overwhelming burden. The cost of bringing in aides to help with her care in her last few months cost $35,000. For many families, covering these types of medically necessary costs is problematic, as these are unforeseeable circumstances that are difficult to plan for in retirement or at any point during one’s lifetime. I also feel that ALS needs to be recognized as a reportable disease. This disease, which has been around for more than 80 years, can strike anyone, at any time. Case counts fluctuate and more funding to help the ALS Registry house this information in a central database will help with research as to possible causes or links to triggers with this disease. How does ALS affect my life? It took away an irreplaceable part of my light, laughter, joy, and a piece of my heart. Her case can never be an example of what others should go through. We have the doctors, the services, and the specialists available to make ALS a livable disease by 2030. What we are missing is funding for research, awareness, educating and training for PCP’s, treatments, and insurance benefits to aid those in their battle. My mom was not given a fair fight, she had more to contribute, more love to share, and more people to inspire. Please use our story so that no other family has to endure what we did, helplessly watching a loved one succumb to this cruel disease, especially in a matter of months. I, personally, will do whatever it takes, as her fight is now my fight. ALS might have won in her battle, but I am now her voice and I will fiercely advocate and continue the fight against this disease for her and others. Thank you for your time and providing me with the opportunity to speak with you today.

Jennifer Bernay, a member of The ALS Association Northern Ohio Chapter

Northern Ohio