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Anxiety is common among people newly diagnosed with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) and their family members, a small study from Sweden reports.
However, symptoms of anxiety tended to ease about six or so months later for patients, while they continued to affect relatives, many who are caregivers, two years after the diagnosis. Depression was less common, but its symptoms held stable for affected patients and relatives, underscoring the importance of ongoing support and attention to mental health.
“A better understanding of and knowledge on the prevalence of anxiety and depression from the time of diagnosis and over time &#8230; will probably contribute to better and more efficient care during the disease trajectory,” the researchers wrote.
The study, “<a href="https://www.sciencedirect.com/science/article/pii/S0022510X23022414">Symptoms of anxiety and depression in patients with amyotrophic lateral sclerosis and their relatives during the disease trajectory</a>,” was published in the <a href="https://www.sciencedirect.com/journal/journal-of-the-neurological-sciences">Journal of the Neurological Sciences</a>.
[recommended-reading id=88222]
<h3>Anxiety evident in 43% of ALS patients, 58% of relatives soon after diagnosis</h3>
<a href="https://alsnewstoday.com/causes-of-als/">ALS damages nerve cells</a> in the brain and spinal cord, making it difficult to control muscle movement. As the disease progresses, a patient’s ability to perform basic tasks, such as walking up steps, getting in and out of bed, or speaking audibly, become more and more impaired.
Being <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> and watching how it affects daily life can be taxing. Because patients usually retain their cognitive skills, they are aware of their progressive physical loss, and the <a href="https://alsnewstoday.com/als-mental-health/">distress and mental health challenges</a> that brings both them and their relatives.
To learn more, researchers with Uppsala University followed 33 newly diagnosed patients — 28 with limb-onset and 5 with bulbar-onset disease — and 33 of their chosen family members for two years. Among relatives, 25 were a patient&#8217;s spouse, six were a patient&#8217;s children, one was a parent, and one a sibling.
Participants were asked to fill out the self-reported Hospital Anxiety and Depression Scale (HADS) shortly after the diagnosis and again at six, 12, 18, and 24 months later. This two-part test assesses the presence and severity of anxiety and depression in the past week, and total scores for each part range from zero (no distress) to 21 (maximum distress).
Assessments taken between one and three months after a diagnosis showed symptoms of anxiety in almost half of patients (45%) and a majority of their relatives (58%), indicating that anxiety at this stage “is relatively common,” the researchers wrote.
Patients&#8217; average level of anxiety severity decreased significantly, starting around six months after diagnosis. But scores remained stable at high levels among family members, suggesting that “the disease affected the relatives’ psychological well-being more,” they wrote.
Depression was less common than anxiety in these groups, affecting 13% of patients and 29% of relatives in the initial months. In both groups, the average score of its severity was similar (4.6 vs. 5.2 points) and did not change significantly over time.
“Relatives are often involved in the patient’s care, taking great responsibility for them and dedicating many hours to help,” the researchers wrote. However, “few relatives received antidepressant and/or anxiolytic [anti-anxiety] treatment.”
<h3>Disease&#8217;s progressive toll not tied to an increase in anxiety or depression</h3>
Physical function was assessed using the revised ALS Functional and Rating Scale (ALSFRS-R). While scores significantly decreased over the two years of follow-up, patients&#8217; increasing physical difficulties did not link with more symptoms of anxiety or depression.
“It could … be that during the disease trajectory, the patient adapts to the disease and the changes that result [from it], which may explain the decrease in symptoms of anxiety despite the increased physical impairment,” the researchers wrote.
While the number of people involved was small, study “results showed that many patients and relatives suffered from symptoms of anxiety quite soon after the diagnosis, and that many relatives had symptoms of anxiety during the disease trajectory,” the researchers concluded.
“This highlights the need to continuously measure symptoms of anxiety/depression in patients but also to pay attention to symptoms among relatives,” they added.

Anxiety high in ALS patients, family members in months after diagnosis

After my husband, Todd, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, I was overwhelmed by grief and filled with anxiety about the future. How was I going to manage as a single parent with <a href="https://alsnewstoday.com/columns/preparing-children-deal-grief-diagnosis-parenting/">two small children</a>? How would they cope with the loss of a parent? What would I do for work after he’s gone?
My mind raced, and I couldn’t sleep. I found a <a href="https://alsnewstoday.com/als-mental-health/">counselor</a> to help me get a grip. He encouraged me to train my mind to focus on today. I met with him regularly for a couple months.
A few years later, Todd needed a <a href="https://www.youtube.com/watch?v=yfITlFFBaRw&amp;t=9s">wheelchair</a>, and he had trouble sleeping at night. We&#8217;d moved back to my hometown so we&#8217;d have the help of my parents, but I was beginning to lose it again.
I did another round of therapy with a new counselor. After seeing him for a couple months, there was once a last-minute conflict, and I ended up spending the time in my car writing in my journal.
I realized that writing with intentionality was nearly as cathartic for me, and I didn’t want to spend the time and money on therapy anymore. In time, I also realized that my stress was magnified because I wasn’t getting adequate sleep. Todd was increasingly dependent on nighttime care. When we started hiring help at night, I felt better.
[recommended-reading id=83803]
<h3>A third round of therapy</h3>
Fast forward to this fall, <a href="https://alsnewstoday.com/columns/trying-see-beauty-after-13-years-with-diagnosis-als/">13 years</a> into <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, and I’ve been feeling increasingly isolated since Todd has become homebound. I’m weary from living with chronic stress. I continue to journal, but I thought I might be helped by an outsider’s perspective.
I met with another therapist. I might be doing as well as possible, considering the circumstances, but I figured therapy was worth another try. I was able to talk candidly, free from any expectations that accompany conversations with people I know.
During our sessions, I filled her in on our situation, the ongoing stress, and the grief that we’ve been living with. I expressed my frustration with our healthcare system and the lack of support for people with <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. I also voiced thoughts about the existential questions that plague me.
The counselor listened as I sorted through my thoughts and emotions. During one session she asked, “How long have you felt like a single parent?”
“Never!” I responded immediately, surprised by my visceral reaction. Todd can’t do a lot of things, but I’m grateful that he&#8217;s still an involved parent.
During another session, I expressed my frustration about our <a href="https://alsnewstoday.com/columns/power-distraction-when-dealing-with-negative-emotions/">night caregiver shortage</a>. “If I can’t line up help, his care falls on me. Everyone else can say ‘I’m not available,’ but I can’t.”
My therapist posed a question: “You mentioned your husband does a lot on the computer. Could he be involved in the recruitment process? Why is it your responsibility?”
I paused, thinking through the roles that Todd and I play.
“I like doing the advocacy for equipment because it feels good to accomplish things and I’m good at it, but I don’t know why I’m doing all the recruiting,” I said.
<h3>Making use of therapy</h3>
When I got home, I asked Todd why he doesn’t recruit.
“Because you’re active on social media and have local connections,” he said.
“But you can email people.”
I asked him to send recruitment requests to church and college-ministry leaders, and he was happy to do so. Increasingly, I’ve been asking him to do other things. When the kids ask me to do something that Todd could do, such as order something online, I tell them, “Go ask Dad.” Todd likes to stay busy anyhow.
By my fifth session, I found myself wishing I could skip my appointment, preferring to do some work outside with my tractor on a sunny afternoon. I like tractor therapy, but since I had a session scheduled, I went and talked. By the end of the session, I felt like I didn’t have anything more to say, and I told the therapist I was going to come in less frequently.
I scheduled my next appointment for the following month. I don’t want to go to therapy every week, but I’m glad I have it available as a tool when I need it.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Living with ALS, I’ve sometimes found talk therapy beneficial

Every once in a while, I step onto my soapbox (mine has special safety rails) to voice my view about an important issue in the ALS community. This time, I’m here with praise for &#8220;<a href="https://alsnewstoday.com/als-mental-health/">ALS and Mental Health</a>,&#8221; an article recently published in <a href="https://alsnewstoday.com/">ALS News Today</a>. In my opinion, it not only validates the elephant in the <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patient exam room — feelings of depression, grief, and anxiety — but it also offers us concise and useful resources.
<h3>It hasn’t always been this way</h3>
Newly <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a> patients might think, “Well, hasn’t emotional health always been included in patient care discussions?” No, it hasn’t.
When I learned I had ALS in 2010, a solid 13 years ago, the prognosis was only two to three years of life following diagnosis. This shortened timeline emphasized how to deal with the progression of <a href="https://alsnewstoday.com/symptoms-of-als/">physical symptoms</a>. I was handed a thick manual filled with photos and descriptions of medical equipment I could expect to use. My husband and I were told to check if our home had enough room to accommodate a <a href="https://www.hoyerlift.com/">Hoyer lift</a>, a hospital bed, and me rolling throughout in a power wheelchair. All very good advice, but it didn’t leave much time to have a conversation about how I was feeling.
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The usual parting suggestion was that I could be referred to a grief counselor or to someone in hospice to talk about death and dying, if I felt I needed it. Those are good resource people, but I needed help developing coping skills, balancing my well-being, and strengthening my emotional resilience.
“We all have an end,” school psychologist Amanda Sifford, who has ALS, says in the article. “Unfortunately, when you have an ALS diagnosis, it just feels like it’s hanging over your head — at least, until you adjust and accept the situation.”
<h3>Adjust and accept</h3>
I found it challenging to process my condition through the stages of grief and finally feel ready to accept my new circumstances. Along the way, I read blogs written by ALS patients. Most expressed their anger, shock, and sadness while posting photos of their slow demise.
Meanwhile, I pieced together a simple formula for daily living, one that combined my knowledge of wellness with the adjustments required to <a href="https://alsnewstoday.com/living-with-als-2/">live with my ALS</a>. I decided to add my voice to the ALS community and began my &#8220;<a href="https://alsandwellness.blogspot.com/2015/01/welcome.html">ALS and Wellness Blog</a>.&#8221;
<h3>Do ALS patients feel depressed?</h3>
Still, I noticed the ALS medical community was slow to recognize the need for mental health resources and offer them to patients and caregivers.
Four years ago, <a href="https://alsnewstoday.com/columns/als-depression-link-anxiety-prognosis/">I wrote this column</a> about my surprise that the medical community was only beginning to identify depression among ALS patients. I wondered why we needed multiple studies to ascertain if having ALS caused patients to feel negative emotions. Really? 
Almost <a href="https://pubmed.ncbi.nlm.nih.gov/36066075/">one-quarter</a> of ALS patients experience depression. The <a href="https://n.neurology.org/content/86/24/2271.abstract?ijkey=2ce9afd889a33617f013836cc1ca65eab9cc2c83&amp;keytype2=tf_ipsecsha">risk of depression</a> is often highest immediately before a person is diagnosed and <a href="https://www.massgeneral.org/neurology/als/patient-education/symptom-management">soon afterward</a>. Really?
We need information to help us deal with anxiety, depression, and apathy. Information to help us cope and thrive. You’ll find it all in the ALS News Today article. That’s why I’m applauding this website for adding this excellent resource. If you&#8217;re a patient, caregiver, or in a circle of support, I encourage you to bookmark it.
Because this resource is one more valuable way we can learn to live well while we live with ALS.
<hr />
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: anxiety

Anxiety high in ALS patients, family members in months after diagnosis

Living with ALS, I’ve sometimes found talk therapy beneficial

Voicing my approval of a mental health resource for those with ALS