my journey in als essay

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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

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Shirley ryan abilitylab was formerly known as rehabilitation institute of chicago [ric] during the time author chris jasch wrote this essay. chris passed away in 2015. we mourn her passing and share this entry with gratitude for her insights..

My name is Chris Jasch and I am an Occupational Therapist in the Technology Center at RIC. I started my career here at RIC in 1987. I worked on the stroke floor for a year then moved to spinal cord. I spent nine years with the team, five years of them as the supervisor of the OTs. In 1996, I moved to the Technology Center, formerly the Brown Center, where I’ve been working with RIC staff and your patients ever since. In 2010, I was diagnosed with ALS. For me, the profession of Occupational Therapy was a perfect match. I thrived on having a role in a person’s return to a meaningful life. I have enjoyed the creativity and collaborative problem solving as we work with our patients to find solutions. We have all worked with patients who have overcome their disabilities to continue on with their lives, as well as with others who have not been able to see their worth after their disability. As OTs, we are in the position to help patients reach their maximum functional level, to influence their attitude, and help them see what they can do more than what they can’t do. Disability has always been a presence in my life. My father had ALS. Having him in a wheelchair and needing assistance was just the way it was. He was my example of a person who lived his life to the best of his abilities, rarely letting his limitations get in the way of what he wanted to do with his family. For example, we continued to go to restaurants, and movies which today doesn’t sound like much of an effort. In the early 1970s, people in wheelchairs were not seen in public much. Ramps were a thing of the future. I distinctively remember him being stared at often. My retaliation was to get in their line of sight and stare right back. In 1975, during my father’s last summer and in a time without any of the technology we have now, he insisted on keeping our tradition of a summer camping trip with friends. I remember that trip fondly, my mother remembers it as a huge effort that could not have happened without friends. When I was ten, my aunt, his sister, was diagnosed with ALS. It was then that we discovered that the familial type of ALS ran in our family. She struggled with depression and rarely left the house. My cousin, her son, passed away in 2003 of ALS. I’ve lived with the knowledge that someday myself, my sister, or my brother might be faced with the same fate. My life is interwoven with disability. I chose a career where I worked with disability every day. I married a man with spinal muscular atrophy who lived his life in a power wheelchair. Disability, for me, has been the norm. We lived what we saw as a normal life. Ken went to college, got a full-time job, a wife, a child and a mortgage; those average expectations needed to fulfill the American dream. When we were younger, we tried not to let his disability limit us. Certainly there was planning (this was pre- ADA), and accommodations were made but we did what we wanted to do. While looking back, I think we should have opened ourselves up to getting more help. On the other hand, our struggles to find the balance between raising our daughter, working full-time jobs, taking care of his needs, and keeping up with our household responsibilities, forced us to work together to find solutions. In November 2008 I started having fasciculations at my left knee. I was terrified. But after checking with my doctors and hoping it was a side effect of medication, I resolved to put it out of my head. In July 2009 weakness in my left foot started and panic set in. After testing we were told by a neurologist that it was not ALS. I had a bulged disk at level L4-L5 on the left side. A little physical therapy to strengthen my core should do the trick. I never truly believed these findings and feared for the worse. My wonderful coworkers became a source of great comfort when crying in my office became a regular occurrence. I was terrified of what the future held and worried about the impact this would have on my daughter, my husband and my job. In November 2009, my husband of 23 years passed away unexpectedly. The progression of my weakness then sped up. We will never know if this was due to the natural progression of the disease or from stress. By February 2010, I needed a cane, by April I needed a foot orthosis, by June I needed a walker, and by August a scooter for distances. July 2010 brought the official diagnosis, something I already knew. Each new stage brought a new challenge. Moving from the cane to the walker; the walker to the chair. My ability to perform those all-important ADLs progressed from independent, independent with equipment, then to the predictable MIN assist, to MOD assist, to directing my own care. I repeated those steps for every activity of daily living; bathing, dressing, toileting, feeding, driving, reaching, grasping and holding objects, typing, writing etc. I was the FIM scale in reverse. After years of rating my patients and developing goals for them to move up the scale, I was quickly moving down the scale. I watched my patients get better as I got worse. I referred to these times as transitions. Each transition brought denial, anxiety, anger, sadness and a great fear of the future. The denial was the most dangerous. Certainly I could still (fill in the blank)… walk to the parking lot (fell), turn off the kitchen light (leaned out of my center of gravity, fell), transfer to the shower chair (fell), continue to dress myself (became a two hour task). It was as if I had never heard the words “injury prevention” or “energy conservation.” It was pointed out to me that while I viewed each change as a transition, the reality was each stage was a loss in my life. Once I began looking at a transition as the loss that it truly was, I was able to acknowledge and grieve the loss and move to the next phase of functional change with easier acceptance and less denial. However, the emotional toll was huge. I was blessed to have a ramp into my home, an accessible bathroom and accessible van. I used a Hoyer lift with my husband every day for twenty-three years. However these necessities were for my husband, not for me. I wasn’t supposed to need them. Yet here I was. I also struggled at work. I tried to minimize my condition. Not easy to do when I was seen using the cane, then the walker, then the wheelchair in the infamous elevators. A packed elevator is not the most ideal location to tell somebody you have worked with for 20 years that you have ALS. In a building full of medical professionals the diagnosis has an instant recognition. On a day-to-day basis as I ran into people I hadn’t seen in a while I watched a common reaction pass-through their eyes; shock, disbelief, followed by a realization of the implications, all within a 90-second elevator ride. The most common question I got was, “Are you sure?” I was lucky enough to have coffee with Dr. Henry Betts one day. He was coming to RIC for therapy on a regular basis. We had the chance to share the irony of our situations and he told me two things that I will never forget. Dr. Betts was comfortable coming to the Institute in his wheelchair and going through therapy. But, I was reluctant to get outpatient therapy. I felt I would be taking therapy time away from somebody who really needed it. After all, I was a therapist myself and should know what needed to be done. Dr. Betts contradicted my reluctance very clearly: why would I not come to the best place in the world for therapy? Dr. Betts was wisely able to put himself in the patient role while I saw myself as an employee that was being a nuisance to other therapists. As I expressed my fears of the future, he very gently said, “You can’t worry about what has not yet happened; the future never works out the way you think it will. You can think about what your evening will be like tonight but it won’t turn out that way. The same concept applies about tomorrow, next month, and next year.” Along the way, I was able to use my OT skills to identify creative adaptations such as using salad tongs to reach various items because the reacher was too long, and using a pair of pliers in the car to retrieve the ATM card or a parking ticket. I started wearing skirts almost exclusively, which made toileting and dressing myself easier. I used common tricks of the trade- long shoehorn, bed ladder, leg lifters, sliding board, quad grip on my electric toothbrush, long straws, drink holder, and modified buttons on my cell phone. I even tried a balanced forearm orthosis (BFO). Work simplification and energy conservation became daily habits. I am certainly blessed to have firsthand knowledge of available technology. I knew which options were available in wheelchairs and have easy access to the experts. I knew how to adapt my cell phone when I was still able to manipulate it and which technology to get once I lost use of my hands. I knew which electronic aids to daily living (EADL) would be the most economical and functional. Fortunately I did not have a learning curve which many of our clients have to overcome. I had been teaching voice recognition technology for the last 17 years, I now use it daily. I can think back to how many times I presented technology options that were technically possible but functionally ridiculous. I now have a user’s understanding of the inherent frustrations that come with technology. Again I am lucky that I am skilled with problem solving but have a better understanding of why some technology winds up in the closet. And here I am today. I can fully move my head and shrug my shoulders. I can still swallow and I can still talk. More importantly, I can still laugh and cry. I can still feel joy as well as sorrow. I can feel a person’s touch, see my daughter smile, hear my cat purr, smell freshly ground coffee and taste rich dark chocolate. I am able to see that I have more blessings in my life than losses. That may sound strange coming from somebody who has experienced a tremendous number of losses in the last 4 years, but I’ve been able to see and experience an unbelievable amount of support, love, and compassion. Had I not been tested, I don’t know if I would have witnessed them as vividly. I have experienced firsthand the power of prayer-how else could I’ve survived the last 4 years? I am not angry at God but know that He is at my side helping me through this part of my life. I still am working, seeing a few patients two days a week with the help of coworkers, students, and volunteers. My manager all the way up to RIC CEO Dr. Joanne Smith has been flexible, accommodating, and supportive beyond imagination. I’ve had several non-RIC people ask me why I’m still working, I’m certainly eligible for disability. To me the answer is simple. This is what I do, this is who I am. It is a huge part of my identity and I feel I can still contribute. My coworkers are like my family. It would be difficult not to see them on a regular basis. I’m teaching patients, students, volunteers, and maybe a few employees what perseverance looks like. I have knowledge and skills that can benefit my patients and colleagues. Plus, with Oprah off the air, daytime television is truly horrific. Before I had my 24-hour caregiver I was at home alone for about six hours, a few days a week. Twenty-five current and former RIC OTs took turns coming over to help me with lunch and odds and ends around the house. I have people making meals for my daughter and me on a weekly basis. I still have people coming over for lunch five or six times a month. You know how we always say “let’s get together”? Well I get to do that. To spend time with people I would otherwise not taken the time to do has enriched my life. I am blessed with an overwhelming amount of support and caring from the RIC community. Throughout this experience I have seen the RIC core values in action. I have hope that the future will be okay, however it plays out. That doesn’t mean it’s going to be easy or without sorrow, but it’s going to be okay. We’ll get through it and we won’t be alone. I have discovered a strength within myself I never knew I had. I have also discovered how wonderful the people of this world are to others. I have experienced compassion beyond measure and have been able to collaborate with the best rehab professionals in the world. In a very unexpected way, by accepting my need to be helped, I have learned perhaps more about life and love than when I worked to the best of my ability to be helpful.

This content is for informational purposes only and may not be comprehensive. Information contained does not imply an endorsement from Shirley Ryan AbilityLab, and does not replace the advice of a qualified healthcare professional.  See here for further details.© Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago). Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

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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

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My ALS Challenge

By Andrew Dundas

My ALS Journey Begins

Published by

Andrew Dundas

What do you do when given a truckload of lemons? Why, you make the best possible lemonade you can, of course! Let me put this statement in context.

I was diagnosed with ALS in December, 2022. The following is the story of how I got to my diagnosis and what I am doing to turn that truckload of lemons into the best lemonade possible!

What Happened to a Herniated Disk?

I’ve had back pain, on and off, for many years.  In the spring of 2022, along with my usual back pain, I started having issues with my right foot, along with ‘twitching’ in my right leg and arm.  My left hand would also periodically shake or tremor.  I went to see my family doctor about these symptoms.  He diagnosed me with drop foot and referred me to a neurologist for testing on a suspected herniated disk and possible pinched nerve.

In August 2022, after my first neurologist appointment, and after thinking I was about to be told I had a herniated disc, the neurologist gave me a probable diagnosis of Amyotrophic Lateral Sclerosis, or ALS, with signs of Parkinsonism and said I had 2-5 years to live with progressive decline before death.  Did I have any questions, he asked?  What??? Yes, LOTS of questions. My wife and I came in thinking I had a herniated disk and now we’re being told I have ALS with 2-5 years to live?  How could this be? 

Lots of Tests… and Questions

After our many questions and a few more tests, I was then referred to Toronto’s Sunnybrook Hospital ALS Clinic for more in-depth testing and assessment.  In December 2022, after four months and several tests later, I received confirmation that I did, in fact, have ALS along with an additional diagnosis of Parkinson’s disease.

When the neurologist at Sunnybrook Hospital gave me my diagnosis, he explained that it is very difficult to determine a length of time of progression due to the lack of information and research.  In other words, even though this disease has been known for over 100 years, there is still very little research about it.  What is known is that symptom progression proceeds at a relative steady state, so the best gauge will be ongoing monitoring of progression to guide treatment.  In addition to the lack of information and research, there are few ALS-specific medications and those that are available are very expensive.

Given this news I turned to my wife and had only one question, “What kind of lemonade are we going to make with this truckload of lemons?”.

Since my diagnosis, the staff at the Sunnybrook ALS Clinic have been great in providing care and support and answering all of our questions (we ask a lot of questions).

What Happened when I Shared My ALS Diagnosis

As I started to share the news of my diagnosis with others though, I had the following reactions: 1) people knew what ALS was and the devastating effects it can have on both the patient and their caregivers; 2) people have heard about ALS and know a little about the disease, but not much, often thinking there is a cure or treatment available to get better; or 3) people have no idea what ALS is.

Having experienced these reactions, and reading about the need for more research and support to assist ALS patients gain access to programs, services and/or life-extending medications, I started to put together the recipe for the “kind of lemonade I was going to make”.  My lemonade will provide a channel to raise funds and provide awareness to support the following: ongoing ALS research, advocacy, and patient & caregiver support to ALS-related programs & services throughout the community.

What is ALS?

ALS is a rare disease affecting approximately 2,500-3,000 Canadians living with ALS and approximately 1,000 Canadians being diagnosed every year.  Approximately 1,000 Canadians die from ALS every year.

ALS Canada [1] describes the disease as follows:

Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.

ALS is not contagious. There is no cure for ALS and few treatment options for the majority of people living with the disease. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.

ALS is a disease with no cure.  It is also a disease that many people do not really know about or understand as it is also difficult to diagnose since symptoms may mask as other diseases.  As a result, diagnosis typically results through a process of elimination of other diseases.  More research has been done within the last 10 years than the last 100 years due to events such as the ALS Ice Bucket Challenge, but there is still a long way to go to raise awareness and funds.

My Lemonade Recipe

As a patient recently diagnosed in the early stages of ALS I ride my exercise bike every day to stay fit and maintain mobility, so why not put this to good use and include it as my main ingredient?  With that, I have started a fundraising program that I am calling the ALS Virtual Mobility Challenge .  This Challenge will be a ‘long-term’ event undertaken over the course of the year, where I will cycle on an exercise bike the equivalent distance of the TransCanada Highway – approximately 7,500 kilometers – from Victoria, British Columbia to St. John’s, Newfoundland. 

Each week, I will do a new blog post highlighting my progress and how I am doing. As well, I will be hoping to also do podcasts where I will spotlight programs and services offered in various areas across the country that provide supports to ALS patients, caregivers and their families.  Interviews will be conducted, as able, with program providers, healthcare providers, caregivers and patients to bring awareness of ALS to the public and generate support for the programs and services offered.  I will also write a blog describing my own journey with ALS.

I have set up a fundraising page for the ALS Virtual Mobility Challenge with ALS Canada for people to:

• Make donations
• Set up and participate in their own ‘Mobility Challenge’
• ‘Challenge’ others to register for their own virtual ride

Those registering for their own virtual ride can then ‘challenge’ others to either donate or do their own rides, thereby increasing the potential for additional fundraising opportunities.

Funds raised will go to support the following:

• Increase funding and support for more ALS research, advocacy and support for patients & caregivers.
• Bring awareness to the general public regarding ALS, what it is and how to provide support to ALS patients and caregivers.
• Exercise and rehabilitative programs
• Home care services
• Mental health supports
• Provide ALS patients, caregivers and families with a platform to share and voice their experiences.

Through this fundraising, the aim is to increase the body of knowledge on ALS and help contribute to a better quality of life those dealing with this disease, with the goal of one day creating a future without ALS. I am looking forward to you reading as I share my ALS Journey and my progress with my ALS Virtual Mobility Challenge, and hope this will both provide you with greater awareness of ALS and to participate in your own Mobility Challenge.

[1] https://als.ca/what-is-als/about-als/

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November 3, 2023

My ALS Journey: thoughts, reflections and unsolicited advice for healthcare

Ajay Sampat, M.D.

Be boundless

Connect with us:.

© 2024 University of Washington | Seattle, WA

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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

• Research article
• Open access
• Published: 23 December 2015

Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study

• M. Galvin 1 , 2 ,
• C. Madden 2 ,
• S. Maguire 3 , 2 ,
• M. Heverin 2 ,
• A. Vajda 2 ,
• A. Staines 1 &
• O. Hardiman 2 , 3  

BMC Health Services Research volume  15 , Article number:  571 ( 2015 ) Cite this article

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The multidisciplinary approach in the management of Amyotrophic Lateral Sclerosis (ALS) has been shown to provide superior care to devolved care, with better survival, improved quality of care, and quality of life. Access to expert multidisciplinary management should be a standard for patients with ALS. This analysis explores the patient journey from symptom onset and first engagement with health services, to the initial visit to a specialist ALS Multidisciplinary Clinic (MDC) in Dublin, Ireland.

A retrospective exploratory multi-method study details the patient journey to the MDC. Data from medical interviews and systematic chart review identifies interactions with the health services and key timelines for thirty five new patients presenting with a diagnosis of ALS during a 6 month period in 2013.

The time from first symptom to diagnosis was a mean of 16 months (median 13 months), with a mean interval of 19 months (median 14.6) from first symptoms to arrival at the MDC. The majority of patients were seen by a general practitioner, and subsequently by neurology services. There was an average of four contacts with health services and 4.8 investigations/tests, prior to their first Clinic visit. On the first visit to the MDC patients are linked into an integrated ‘system’ that can provide specialist care and link with voluntary, palliative and community services as required.

Conclusions

Engagement with a multidisciplinary team has implications for service utilization and quality of life of patients and their families. We have demonstrated that barriers exist that delay referral to specialist services. Comprehensive data recording and collection, using multiple data sources can reconstruct the timelines of the patient journey, which can in turn be used to identify pathways that can expedite early referral to specialist services.

Peer Review reports

Amyotrophic Lateral Sclerosis (ALS) is a neurodegenerative disease characterized by progressive degeneration of motor neurons in the brain and spinal cord, and is considered to be one of the most devastating neurological disorders in adults. Up to 50 % of patients with ALS develop a degree of cognitive impairment [ 1 ]. There are currently no effective disease modifying therapies for ALS and 70 % of those affected die within three years from symptom onset [ 2 ]. There are approximately 110 new cases of ALS in the Republic of Ireland each year, and at least 80 % of these attend the National ALS Clinic in Beaumont Hospital, Dublin [ 3 ].

A diagnosis of ALS is primarily based on the physician’s interpretation of clinical symptoms and signs, and investigations to exclude other causes [ 4 – 6 ].The wide range of presentations of ALS coupled with the rapid clinical trajectory require a flexible approach to clinical care that is best provided in an integrated multidisciplinary setting [ 7 , 8 ]. Early diagnosis and access to expert multidisciplinary management should be available as standard for patients with ALS. However, most studies document a delay of 12-15 months from first symptom to diagnosis, and many patients experience further delays prior to referral to specialist services. The purpose of this study was to document and describe in detail the patient journey from their first symptoms, and first engagement with health services, to their initial visit to the multidisciplinary clinic. The overall objective was to identify possible barriers to accessing multidisciplinary care and highlight the complexity of the referral trajectory.

Multidisciplinary care

Given the current lack of effective treatment options for ALS, the aim of care is to maximise quality of life from the time of diagnosis through to the end of life. A palliative approach to care, delivered through a multidisciplinary team (MDT) holistically considers the physical, psychological, social and spiritual aspects of the patient, family and illness. Optimal palliative management requires a strategy that integrates hospital-based multidisciplinary care with community-based interventions [ 9 ]. The specialist multidisciplinary clinic is more than a bounded spatial and functional entity. It is representative of an approach to clinical management, clinical practice and healthcare delivery. The multidisciplinary approach in the management of ALS has been shown to provide superior care to devolved care, with better survival [ 7 ], improved quality of care, and quality of life. Access to expert multidisciplinary management should be a standard for patients with ALS [ 4 , 10 ].

ALS Diagnosis

Delays of up to 12 months from the time of first symptoms to diagnosis of ALS have been reported [ 5 ]. Andersen et al. [ 4 ], report the mean time from the onset of symptoms to confirmation of the diagnosis of ALS of 10–18 months. In England and Wales, Househam and Swash [ 11 ], found the mean time from onset of symptoms to diagnosis was 16.2 months, while Donaghy et al . , [ 12 ] identified a median time 15.6 months from first symptoms to diagnosis in Northern Ireland. A review of diagnosis timelines for patients with ALS over a 20 year period at one treatment centre in the United Kingdom found that the time from the first symptoms experienced by an individual to a definite diagnosis of ALS had remained relatively stable at approximately 12 months [ 13 ].

Diagnostic delays are associated with clinical complexity, the patient either not recognizing or denying early or intermittent symptoms, inefficient referral pathways, with patients not being referred to specialist physicians, or being referred to a specialist other than a neurologist/ALS specialist, and the relative rarity and the consequent lack of familiarity with the condition [ 4 , 13 , 14 ]. However, as the disease follows a generally predictable duration from first symptoms to death, such delays represent a significant proportion of the total disease pathway. Early diagnosis has implications for psychological outcomes for patients and their families, for quality of life and service utilization [ 13 , 15 ]. It reduces the necessity for multiple referrals through the healthcare system in search of a definitive diagnosis, and facilitates future planning and the introduction of Riluzole therapy, currently the only available disease-modifying therapy [ 4 , 16 ]. The diagnosis story has been described as a sequence of: recognising a problem, seeking medical help, referrals to a series of health professionals, and confirmation of ALS diagnosis [ 14 ].

During a clinical consultation, the medical history is taken through a semi-structured interview, which has a number of components including presenting complaint, past medical history, current medications, family history, social history, and systems review. Physical examination is also structured by system.This narrative is transcribed into a letter, and sent back to the referring person, and copied to the general practitioner (if they are not the referring doctor), and the patient’s chart.

As part of this study, medical interviews and medical charts for 35 patients who were initial attenders at the MDC were reviewed. These patients had either been previously diagnosed elsewhere or had a confirmation of their diagnosis of ALS on the occasion of this first consultation with the specialist neurologist at the National ALS Centre. Ethical approval was received from Beaumont Hospital Medical Research Ethics Committee review board.

Components of the patient journey derived from a content analysis of the medical interviews, were incorporated into a template. Further data were collected by systematic review of medical charts and by elaboration of the journey using ancillary documentation including nursing notes and those generated by clinical professionals.

A template (Fig.  1 ) was designed to collect basic patient information such as administrative identifiers, sex and date of birth. The patient journey itself was documented under a number of headings: first symptoms, site of onset, date of first visit to general practitioner (GP) regarding symptoms, referrals to health care professionals (HCP), interventions or tests performed at each referral destination, date of diagnosis, the initial visit to MDC and related actions and recommendations. The medical charts for this cohort were reviewed for data to populate the timeline template. This was a sequential and iterative process as the data collected in one phase contributed to the data collected in another i.e. components of the patient journey derived from a content analysis of medical interviews, informed the design of the data collection template which subsequently documented the patient journey with data from the medical chart review. The site for this study is a single clinic, at the National ALS Centre at Beaumont Hospital Dublin. A consecutive sample of thirty five new patients presenting with a diagnosis of ALS during a 6 month period in 2013 were included in this analysis.

Data Collection Template: chart review – Timeline to Multidisciplinary Clinic

From the medical interviews we identified components of the patient’s journey to the MDC. The patient and caregiver/family present described when s/he first started feeling unwell, often noticing symptoms that appeared unrelated while doing ordinary tasks; and sometimes no action was taken as there was no immediate concern. The family member often noted symptoms independently of the patient, encouraging him/her to seek medical advice. The first contact with the health services regarding symptoms was most often with a general practitioner, and then a referral journey began from one health care professional to another, from generalist to specialist, involving a range of tests and interventions.

Findings from the chart review indicate that on first attendance at the MDC the mean age for this group of 35 patients was 64 years (range 38.7 to 75.9), 51 % were male, and 63 % had spinal onset. 51 % of patients were diagnosed as ‘definite’ for ALS according to the El Escorial criteria (Table  1 ).

• Patient journey

The patient journey from first symptoms, contact with health services, ALS diagnosis and the initial visit to the MDC at Beaumont Hospital is illustrated in Fig.  2 below. There was an average of 5.5 months (median 3 months) between the first symptom and visiting a GP; a mean of 11.2 months (median 8) from the first symptom to contact with Neurology services, and 16 months (median 13) to ALS diagnosis, with over one and a half years (mean 19.1 months, median 14.6) from the first symptom to first visit to the multidisciplinary clinic.

Timeline –First Symptom Timeline

Health service contact

From the information recorded, 91 % of patients ( n  = 32) had contact with a general practitioner before embarking on the subsequent referral pathway to the MDC. For this cohort of patients the time from first GP visit to attending the MDC took an average of 13 months, (median 10.5). All patients had at least two contacts with health care professionals before attending the MDC, with the vast majority having multiple contacts (mean 3.97; median 3) (Fig.  3 ).

Contacts with Healthcare Professionals

For this group of patients overall there were 139 recorded contacts with health care professionals. The majority (94 %) had contact with some Neurology service (e.g. neurology, neurophysiology, neurosurgery) before attending the MDC, 15 attended Neurology services as a second contact with the health service , 17 as a third contact and so on. 34 % had been to hospital or Accident and Emergency (A&E), and 17 % attended orthopaedic and physiotherapy services respectively (Table  2 ).

Over the course of these visits to health care professionals there was an average of 4.8 investigations and tests carried out. Neurophysiology and Radiology investigations were the most common (Table  3 ).

The patient journey from first contact with the health services up to initial visit to the multidisciplinary clinic, including numbers of contacts with each service, is illustrated in diagrammatic form in (Appendix 1 ). A schematic representation of the sequence of health service contacts up to the initial visit to the MDC, and the time taken (in months) from first contact with the health services and the multidisciplinary clinic is shown in (Appendix 2 ).

First visit to MDC

During the first visit to MDC, these patients were seen by the Consultant Neurologist and Clinical Nurse Specialist and subsequently by other members of the multi-disciplinary team as appropriate to their condition. Occupational Therapy and Physiotherapy were the services used most frequently during this initial visit (Fig.  4 ). At the Clinic patients received treatment and advice from allied health professionals, with links made with health and social care services in the community and voluntary sector as required.

MDT – Service Usage

The personal relationship between the patient and physician remains the basis of high quality treatment [ 17 ]. Illness, and the process of being ill, is formed and articulated in the physician-patient encounter. The patient’s experience of symptoms is interpreted by physician’s medical knowledge, leading to a diagnosis, and a corresponding therapeutic intervention [ 18 ]. Physicians must know the facts of pathophysiology but also the individual patient and the symptoms, signs and answers to questions that fill out the story of the illness presented to him/her for medical attention. The interpretive reasoning required to understand signs and symptoms and to reach a diagnosis is represented in its situated and circumstantial uncertainty in narrative [ 19 ].

The pre-diagnostic phase has been described as a ‘diagnostic roundabout’ [ 13 ], characterized by uncertainty and traumatic experiences. From the chart review we identified that the majority of this cohort of patients (91 %) attended a GP as their first contact with the health services. We have identified an average of four contacts with health services (with a maximum of 7 contacts) and 4.8 investigations/tests, prior to the first MDC visit. Neurophysiology and Radiology investigations were the most frequently performed.

The time from first symptom to diagnosis was a mean of 16 months (median 13 months). This may reflect delayed referral for specialist investigations, and patients being initially directed to specialities other than neurology such as physiotherapy, orthopaedics, or to staff in local general hospitals which may not have recognised the underlying neurological problems. Overall, this led to a mean delay of 11.2 months (median 8) from first symptom to contact with Neurology services. The time from first GP visit to attending the MDC took an average of 13 months, (median 10.5 months). The timeline constructed shows a mean interval of 19 months (median 14.6) from first symptoms to arrival at the specialist MDC. The Patient Journey (Appendix 1 and 2 ) identifies the sequence of health service contacts, and the journey over many months, which patients travelled before the MDC. Patients and their families began their engagement with the multidisciplinary team at their first clinic visit, with a majority being seen by Occupational Therapy and Physiotherapy, and others making contact with Speech and Language Therapy, Dietician and Neuropsychology.

Few studies have employed qualitative approaches to explore the diagnostic experience from the perspective of patients and their carers [ 14 ]. As part of a longitudinal study at the National ALS Centre in Dublin, following the patient and caregiver journey, informal caregivers of people with ALS were asked about the time up to the ALS diagnosis and what it was like for the caregiver. A preliminary thematic analysis [ 20 ] of their responses provides an insight into the journey to the MDC, as a series of seemingly unrelated symptoms went unrecognised, with subsequent differential diagnosis by health professionals . The caregivers recounted stages on the referral journey, as one commented “we first went to the physiotherapist, then the neurologist about her migraines”, and for another “the doctors … as a last resort they sent us to a speech and language therapist and the speech and language therapist referred us to a consultant neurologist.” For some it seems that health-related information was revealed through less than optimal communication with the HCPs, and according to one caregiver “the way the doctor told us was not great. Doctor left us and thought we would ask lots of questions and we didn’t ask anything”.

The medical interview is a version of events as remembered and recounted by the patient and his/her family, mediated by the health care practitioner. This account is reflected in the medical interview/letter and presented in a particular format. It is important to bear in mind the positionality of the patient-caregiver and physician in a power-knowledge-practice complex; and also to consider the social rules of engagement and interaction, the social location of the patient and family member, time constraints, and that the illness narrative can be both formed and changed by the medical encounter (co-creation). Nonetheless, the medical interview provides valuable insight into the crucial journey of the patient and caregiver to their initial visit to the MDC, highlighting contacts with the health services and timelines on the journey. A review of the medical charts for these patients generated fine-grained information from which detailed schematic and individual patient journeys were constructed.

The use of multiple data sources in this analysis - medical interviews and systematic chart review - allowed for cross-checking of information in an iterative process for clarification of details as required. The interviews recorded information in narrative form and exact dates were not always included, while the medical charts contained comprehensive information which was often ‘fleshed out’ by going back to the medical interview data for corroboration and/or context .

Through the process of this study gaps in data recording were encountered. During the initial medical interview it is understandable that patient and caregiver/family might not clearly recall detailed information and dates, names or clinical specialties of practitioners whom they encountered, or precise tests and investigations. The precise noting of dates of referrals and tests, in a busy clinical situation is not always possible. For accurate analysis of the patient journey it is important to record detailed and specific information and to generate robust data for health services research. This study has contributed to highlighting the implications of data recording for clinical management leading to the development of a systematic recording and data collection framework.

Access to multidisciplinary care should be the standard for all ALS patients. Our findings suggest a mean of 19 months from first symptom to the initial visit to the Clinic, during which time the patient attends a variety of health care practitioners and undergoes tests and investigations as directed. The timelines on the journey from noticing first symptoms and involvement with health services to arrival at the MDC, can involve personal and systemic factors. Patients may ignore or choose to deny symptoms, and postpone engagement with health care professionals, while obstacles within the health system such as shortages in essential staff, poor access to investigations, limited knowledge of the condition and a failure to recognize the benefits of the MDC can affect the trajectory of the subsequent journey to the MDC. While earlier diagnosis could avoid unnecessary referrals and facilitate future planning, this is not always feasible. ALS is relatively rare and most general practitioners have limited experience of the condition. Our data illustrate that interaction with the general practitioner is a common first point of engagement with the health services. A “red flag” guideline has been established for general practitioners in the UK, the aim of which is to expedite referral for differential diagnosis [ 21 ]. Timely referral to the specialist MDC for those with suspected disease is also essential. Our data would suggest that utilization of unnecessary investigations, and an apparent reluctance by non-specialists to make a definitive diagnosis may also delay referral to MDC. Further work using larger patient cohorts will be required to confirm these observations.

This is a small scale study referencing a single specialist clinic. Nevertheless, this exploratory study has identified the importance of comprehensive data collection and the utility of multiple data sources, for the elucidation of touch-points, timelines and identification of the patient journey. Additional information, for example, on patient’s distance from the MDC, socio-economic characteristics and progress of the condition and a larger sample size will allow for the exploration of trends and associations within the data.

This exploratory multi-method study details the patient journey to a specialist ALS Multidisciplinary Clinic (MDC). On the first visit to the MDC, patients are linked into an integrated system comprising expertise in neurology, specialist nursing, respiratory medicine, physiotherapy, occupational therapy neuropsychology and palliative care that can provide specialist care and link with voluntary, palliative and community services as required.

In ALS the precise patient journey from first symptom to diagnosis to death and the economic costs of disease management have not yet been fully mapped. The notion of a pathway conveys the idea of a linear progression albeit one that can split off in a number of directions. The concept of a journey is preferred here and captures an impression as outlined in the patient narratives as something that is embarked upon without a known destination in mind. This analysis has tracked the patient journey to the Multidisciplinary Clinic at the National ALS Centre in Dublin. Engagement with a multidisciplinary team has implications for service utilization and quality of life of patients and their families. Detailed analysis of the patient journey is urgently required by following the journeys of people in real time from the point of diagnosis, and by retrospective collection of experiences prior to diagnosis. This method can generate a comprehensive map of the interplay between the patient/caregiver dyad with the health services, and in doing so can formulate a coherent set of guidelines that will facilitate early access to specialist services.

Abbreviations

accident and emergency

amyotrophic lateral sclerosis

computed tomography

electromyography

ear nose and throat

general practitioner

Health Care Professionals

multidisciplinary clinic

Multidisciplinary Team

magnetic resonance imaging

nerve conduction studies

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Acknowledgements

This research was supported by funding from and the charities Irish Motor Neurone Disease Association and Research Motor Neurone, the Health Research Board, Ireland, and the European Joint Programme in Neurodegeneration (JPND)

The sponsors of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report.

We would like to thank Aoife Dooley and Katie Lonergan for their assistance with data acquisition.

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Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College Dublin, Dublin 2, Ireland

M. Galvin, C. Madden, S. Maguire, M. Heverin, A. Vajda & O. Hardiman

Department of Neurology, National Neuroscience Centre, Beaumont Hospital, Dublin 9, Ireland

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Correspondence to M. Galvin .

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Competing interests.

We wish to draw the attention of the Editor to the following facts which may be considered as potential competing interests.

OH is Editor in Chief of the journal Amyotrophic Lateral Sclerosis and the Frontotemporal Degenerations, and a member of the editorial board of The Journal of Neurology, Neurosurgery and Psychiatry.

MG, CM, SM, MH, AV, as none declared.

We wish to confirm that there are no known competing interests associated with this publication and there has been no significant financial support for this work that could have influenced its outcome.

Authors’ contributions

MG designed the study. MG, AS and OH were involved in the acquisition, analysis and interpretation of data. MG drafted the manuscript, MG, AS and OH revised the drafts for intellectual content. CM, SM, MH and AV contributed to the acquisition, analysis and interpretation of data, and the revision of the paper. All authors read and approved the final manuscript.

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MG is a Research Fellow in the School of Nursing and Human Sciences, Dublin City University and visiting Research Fellow, Academic Unit of Neurology Trinity College Dublin

CM is a Research Assistant, Academic Unit of Neurology Trinity College Dublin

SM is a Neurologist Research Registrar at the National ALS Clinic, Beaumont Hospital Dublin and Academic Unit of Neurology Trinity College Dublin

MH is Research Manager at Academic Unit of Neurology Trinity College Dublin;

AV is Research Manager at Academic Unit of Neurology Trinity College Dublin;

AS is Professor of Health Systems, School of Nursing and Human Sciences, Dublin City University

OH Consultant Neurologist National ALS Clinic, Beaumont Hospital Dublin; Health Research Board Ireland Clinician Scientist; Professor and Head of Academic Unit of Neurology, Trinity College Dublin.

Patient Journey from first contact with health services to MDC – (numbers indicate contacts with each service)

Schematic representation of Patient Journey to MDC (duration in months from recorded first health service contact to MDC)

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Galvin, M., Madden, C., Maguire, S. et al. Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study. BMC Health Serv Res 15 , 571 (2015). https://doi.org/10.1186/s12913-015-1229-x

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My journey As a Student Essay

Essay on topic my journey as a student.

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As a student, my journey so far has been full of challenges, growth, and self-discovery. I have learned a lot about myself, my abilities, and my passions. In this essay, I will reflect on my journey as a student, highlighting the milestones, struggles, and achievements that have shaped my academic life.

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My journey as a student started when I was in elementary school. I vividly remember the excitement and nervousness I felt on my first day of school. I was eager to learn and make new friends. As I progressed through the years, I encountered many challenges, such as adjusting to new teachers, making the transition from elementary to middle school, and learning how to manage my time effectively. Despite these challenges, I remained committed to my studies and continued to work hard to achieve good grades.

In high school, I faced a new set of challenges. The workload was more rigorous, and I had to balance academics with extracurricular activities and part-time work. During this time, I also discovered my passion for writing and became an active member of the school newspaper. This experience taught me the value of teamwork, communication, and leadership.

As I entered college, I was both excited and nervous. I knew that college would be a new and challenging experience, but I was determined to succeed. I quickly learned that college required a higher level of dedication, discipline, and self-motivation. I had to learn how to manage my time efficiently, prioritize my tasks, and seek help when needed. Despite the challenges, I thrived in college and became more confident in my abilities. I also discovered new interests and passions, such as studying abroad and volunteering in my community.

Conclusion:

My journey as a student has been a remarkable experience. It has taught me valuable life skills, such as perseverance, time management, and teamwork. I have learned to adapt to new situations and challenges, and to never give up on my dreams. I am grateful for the opportunities I have had and for the people who have supported me along the way. As I continue my academic journey, I am excited to see where it will take me and what new experiences and challenges I will encounter.

Hello! Welcome to my Blog StudyParagraphs.co. My name is Angelina. I am a college professor. I love reading writing for kids students. This blog is full with valuable knowledge for all class students. Thank you for reading my articles.

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