Like many others in my ALS community, I try to keep up with ALS-related news and research. I’ll admit, though, that reading some scientific terminology makes my eyes glaze over. However, I do have a few favorite topics, including exercise, quality of life, and emotional well-being. Recently, I came across a news item that made me sit up and take notice: It was about how high levels of apathy felt by ALS patients create a burden for their caregivers.
I don’t disagree with the premise and am not surprised by the findings. What pushed my buttons was the realization that medical experts are still trying to figure out if having ALS causes patients to feel negative emotions.
ALS and depression?
Allow me an eye roll here. Yes, indeed, we ALS patients do experience negative emotions. Who wouldn’t feel angst at a diagnosis of a disease that has no cure and a prognosis of two to five years? To paraphrase a reader’s comment, we don’t do a stand-up comedy routine about the experience!
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What irked me was that this study was one more in a long line of variations on a theme, published over and over. Following are a few examples:
One study published in the journal Neurology in 2005 examined the prevalence of depression in late-stage ALS and sought to “determine whether depression increases as death approaches.”
Then, 10 years later, another study looked at a “possible association between anxiety-depressive disorders” in those with ALS.
A year later, in 2016, Swedish researchers found a higher risk of clinical diagnosis of depression, both immediately before and after being diagnosed with ALS.
When I think of all the walkathons, bake sales, and fundraising events we hold to support ongoing research only to have those dollars spent on duplicate studies, it makes me want to ask, “Can we please get a refund?”
There is good news
Information to help ALS patients deal with anxiety, depression, and apathy is available and studies are examining various strategies to help us to remain positive.
- I follow Francesco Pagnini, PhD, who has published many studies focused on improving ALS patients’ quality of life.
- My fellow ALS News Today columnist Rachel Doboga shares an excellent three-step treatment plan for ALS-related depression.
- Several of my columns discuss feeling down and out and how to find a more positive perspective. Two examples are, “The ALS Game Board of Life” and “Are You Stuck in the ALS Waiting Room?”
Let’s improve our quality of life and learn how to live well while living with ALS.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.