*The translation of this article in French and Portuguese has been made through machine translation and has not been edited yet. we apologise for any inaccuracies.
To care for, and eventually lose a loved one with amyotrophic lateral sclerosis (ALS) is heartbreaking and can be difficult to talk about. To help build awareness around this rare motor neurone disease (MND), Jim Spangler shares his story as an ALS caregiver for his father, Donald Spangler, who passed away in September 2009.
Amyotrophic Lateral Sclerosis (ALS) is a degenerative motor neurone disease that affects the neurological pathways responsible for controlling voluntary muscles. It is a rare, incurable, and terminal disease that destroys nerve cells, leading to varying symptoms, most notably progressive muscle weakness and overall paralysis. Every year the International Alliance of ALS/MND Associations mark June 21st as the Global Day of Recognition for ALS/MND. To assist in spotlighting this condition we spoke to Jim Spangler, Director of Operations at M3 Global Research, about his deeply personal understanding of the impact ALS. Jim’s father, Donald Spangler, was diagnosed with Amyotrophic Lateral Sclerosis in 2008 and ultimately lost his battle nearly a year later. Jim recounts his experience caring for his beloved father, how he coped with facing the inevitable, found ways to implement self-care and maintained a realistic outlook along the way.
Thank you, Jim, for sharing the memory of your father and your personal experience as an ALS caregiver. Your story and contribution may inspire others to do the same.
ALS Diagnosis and Misdiagnosis
“My father was 77 when he was diagnosed with ALS, but probably battling symptoms from the age of 73.” Jim recalls, “He was active and nicknamed The Mayor because he knew and spoke to everyone. He would go to the gym five days a week and always said his goal was to get back there. It was difficult to see how ALS impacted him and see all the continued misdiagnoses and treatments he went through before getting properly diagnosed.”
The exact cause of Amyotrophic Lateral Sclerosis is not yet known. Many experts believe it is a combination of genetic and environmental factors that trigger the onset of this nervous system disease. Research has also shown that age, gender and family history may increase your risk of developing ALS. Studies indicate that men are prone to developing ALS more frequently than women, with the most common age range of diagnosis being between 40 and 60 years old. The early symptoms of ALS are unique to each person. The most common symptoms include muscle weakness that begins in the limbs and eventually affects the body’s ability to speak, swallow and breathe. Prior to receiving an ALS diagnosis, individuals may experience muscle twitching, cramps, and stiffness. As the disease progresses, the affected muscles become smaller and weaker, and the tongue can develop twitches.
Jim explains, “One of the biggest challenges is because ALS is so rare it presents as other conditions. My dad was having all kinds of issues like leg pain, back pain and lack of strength in his hands. He was misdiagnosed for three to four years when doctors were recommending different treatments such as epidurals and back surgery, for a possible pinched nerve, to potential dementia, until he finally decided to go to the University of Penn and saw an ALS specialist who diagnosed him with ALS.” Jim’s advice to someone who is symptomatic is to go to an ALS centre and see a specialist as soon as possible. He says, “ALS is not something doctors see every day, so General Practitioners may not jump right to an ALS diagnosis. They will sometimes diagnose you with other things first and then refer you to a specialist. At that point the disease may have progressed, so my advice is to get a diagnosis early on, so you aren’t spinning your wheels.”
Specialists diagnose Amyotrophic Lateral Sclerosis through careful observation, including a complete medical history and neurological tests to help determine the extent and nature of the nerve damage. There are no lab tests or invasive procedures to diagnose ALS, although tests such as Magnetic Resonance Imaging (MRI) and Muscle Biopsy may be necessary to rule out other conditions.
ALS Symptoms and Treatments
Jim continues, “My mother was an experienced geriatrics nurse and she suspected something was off, so my father went to the doctor pretty much right away. ALS impacts everyone a bit differently but for my father, it impacted his lungs the most. His lungs were not strong enough to exhale all the carbon dioxide and that would result in him hallucinating.”
Retaining too much carbon dioxide in the body can cause symptoms such as fatigue, headaches, confusion and even delusions. Jim states the ALS specialist prescribed medication for his father’s symptoms and a machine called a Bilevel Positive Airway Pressure machine to assist with the difficult breathing that his father experienced.
“The ALS specialist put him on a BiPap – a machine he would wear that would force his lungs to work. It would keep his oxygen and carbon dioxide levels at a normal range and as his disease progressed, he would wear it 24/7 with increased intensity. At the time of his diagnosis, there was only one drug on the market for ALS, so he tried it. He was also given anxiety medication.”
ALS patients are primarily treated for the symptoms they experience due to the progression of this incurable neurological disease, and each treatment can have a significant effect on a patient’s daily quality of life. Jim further explains, “A BiPap meant he would have a mask on permanently at all hours of the day and night. Realising there was no cure for his diagnosis caused him to have anxiety, so he was prescribed anxiety medication as well. At a certain point, he stopped going to the doctor. Needing an electrical source for the BiPap machine causes a lot of strain on the patient and caregiver to travel for physical appointments with a doctor who could just tell him that ‘yes you still have ALS’, so instead, it was home health aides stopping by periodically to check in on how the disease was progressing and adjusting medication to his symptoms.”
ALS Caregivers Need for Self-Care and Support
Family caregivers of individuals with terminal illnesses face a unique set of challenges. As Amyotrophic Lateral Sclerosis progresses, so does the amount of care required for their loved ones, often leaving ALS caregivers feeling overwhelmed. Caring for a loved one can be emotionally and physically exhausting, and many ALS caregivers struggle to maintain their own physical and mental well-being. It is important to find support from friends, family, and healthcare professionals whenever possible to help in managing the unique challenges that come with caring for someone with ALS.
Jim agrees and shares that he found comfort in taking care of his physical well-being. “My support has always been the gym, as a previously high-level competitive bodybuilder. When I was training, I had the ability to forget all the issues of my daily life. It became an escape and helped me get away from everything.”
Jim mentions, in addition to his mother being a retired geriatrics nurse, he also has two sisters who are nurses, “When my dad was at his worst, it was only a week until he passed. Up until that week, he was able to do most things on his own. My mother knew the trail we were on. She got him up to the kitchen table every night for dinner and to the couch every day to watch Ice Road Truckers, a show that he loved. I would help get him into bed each night. In the last week, when things did go severely downhill, he was able to have his closest family members care for him since we had that medical experience. In that respect, we were lucky.”
Jim remembers his father for his strength, his influence, his willingness to help everyone and for taking care of himself throughout his life. “He took care of our acre and a half of land, working outside all weekend and going to the gym five days a week up until his diagnosis. To see someone like that get hooked up to a machine was heartbreaking. It’s important for me, my family, and his friends to keep his memory alive and not focus on the ALS.”
The Final Stages of ALS and Celebration of Life
Donald was diagnosed in October 2008 and passed away in September 2009. Jim’s father had dreams of getting back to the gym after his diagnosis, unfortunately, that did not happen. When first diagnosed, the ALS specialist predicted Donald had four months more to live at most – he lived more than twice that long. Jim believes his father’s general health, the way everyone took care of him and his father’s outlook on life allowed him to live more than twice that long.
According to Jim, Donald Spangler set a record within his family by living longer than any other Spangler male and had a strong support group of lifelong friends affectionately dubbed “The Westford Road Gang” who grew up together in the Olney neighbourhood of Philadelphia, Pennsylvania. It was important for Jim that his father’s friends would come weekly to spend time with him, so Donald always had visitors to keep his morale up. Jim strongly believes, “The environment you create for that person is the outlook they will have.” Jim also stresses the importance of celebrating life.
“I wrote my father’s eulogy while he was still alive. I wanted it to have a certain flare that only he could provide as he loved to talk. I wanted the eulogy to represent him, so I sat with him and wrote it. I wanted people to celebrate his life at his funeral. Although I couldn’t read it myself, I was too emotional on that day, I wrote it and made sure my mother was okay with it beforehand. I highly recommend, if you have a loved one where time is limited, to sit down with them if they are open to it. Create the environment they want to celebrate their life and get people laughing and joking at the funeral, instead of feeling only sadness and loss.”
The Value and Importance of ALS Caregivers’ Stories
When asked about the importance of working on market research related to Amyotrophic Lateral Sclerosis Jim states, “My dad didn’t want to talk about it, he just wanted to live his life and at times he didn’t really know what was happening. This is a good example of why ALS caregivers’ stories are so valuable. By the time patients are correctly diagnosed, they may be too far along and too symptomatic for them to speak about their condition. This is why ALS caregiver opinions are critical.”
Jim continues, “Working on market research projects on ALS is important for me because some people and clients may not always be aware of the restrictions ALS patients are facing. Things like getting out of the house for an interview, or even being coherent enough to complete an interview, can be challenging and sometimes the ALS caregiver’s point of view can be better because they can provide the full picture in a way the patient cannot. I like to see the research being done and provide my personal experience to help improve screening criteria to align with the reality of what is going on in the patient and caregivers’ daily life. It is important to set expectations of how often you will be able to see them or speak to them, if at all, and the type of information to ask of them. When I work on ALS projects, I can talk to clients from real-life experiences about what the challenges of the research might be. It’s important for me to be helpful. That was something my dad instilled in me growing up and in that way, I honour his memory. ALS market research is not only important and meaningful to me, but it´s also easier for me to contribute this way right now, compared to participating in fundraisers and walks, although those things are very important to do as well.”
Jim was laid off during the time his father was at his worst. Even though it was a challenging time, Jim states he wouldn’t have changed anything about the way he handled things and kept a realistic outlook. “I had to live in reality, meaning, we are all going to die someday, it’s a part of life. My perspective was: okay, now I generally know when my father’s life will end. I can either sulk and be mad or I can spend the time I have together with him and make the most out of it. I decided to move back home to help my mum. Now I look back on being laid off as a blessing because I was able to spend three to four months with my father that I never would have had if I wasn’t laid off.” Jim adds, “Sometimes we learn more when things go bad rather than when things go smoothly. I learned a lot about how to enjoy time with people from knowing how it feels to spend time with someone who doesn’t have much time left. I knew my days with him were less than one year, so I did the best I could to make the most of it. As difficult as it was, I will always be grateful for that time I had with him.”
Although there is no cure for ALS, creating awareness, having an early intervention, and finding the right treatment options for symptoms can improve a patient’s quality of life throughout their treatment journey. If you, or anyone you know, exhibits symptoms of the condition, don’t ignore the signs, or hesitate to consult an ALS specialist because early detection is key. It is also important to participate in research on ALS. ALS patient and ALS caregiver insights can lead to an improved understanding of the symptoms, possible causes, and effectiveness of treatments. Healthcare market research is a key factor in leading to better treatment options for those living with ALS and improving future outcomes.
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