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Joe&#039;s Atlas Experimentation Site

One important habit I enjoy doing every day is keeping up with the latest <a href="https://alsnewstoday.com/category/news/">ALS-related news</a> and research. But every once in a while, I come across an article that has me muttering, “Was this research even needed?” And more often than not, I answer my own question with, “Well, no.” The researchers could’ve just asked me or any other <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patient for our opinion.
What pushed my buttons was <a href="https://alsnewstoday.com/news/anxiety-als-patients-family-soon-after-diagnosis/">reading about a recent two-year study</a> that found that many ALS patients and their relatives experience anxiety and depression after a <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>. Really?
Plus, I knew this study was just one more in a long line of variations on the same theme, published over and over. Several years ago, I <a href="https://alsnewstoday.com/columns/als-depression-link-anxiety-prognosis/">wrote</a> about this same topic. In it, I referenced several studies dating back to 2005, all looking at the possible association between anxiety-depressive disorders and ALS. Really?
Why are medical experts still trying to figure out if ALS causes patients to feel negative emotions, especially when concise and useful <a href="https://alsnewstoday.com/als-mental-health/">resources on the subject</a> are already available?
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<h3>What we want</h3>
What do ALS patients want? My advice: Don’t guess; ask us and we’ll gladly tell you.
An excellent example of asking is the recent survey that <a href="https://alsnewstoday.com/">ALS News Today</a> reported on in &#8220;<a href="https://alsnewstoday.com/news/survey-offers-look-life-treatment-priorities-those-living-als/">Survey offers look at life, treatment priorities of those living with ALS</a>.&#8221;
Even though the survey represented ALS patients from nine European countries, I believe similar results would be found in the U.S.
Among the many insights shared in the survey, this statement stood out to me: “When asked about what they valued more about current and new <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatments</a>, most patients wanted therapies that could stop disease progression.”
In other words, the next best thing to a cure.
<h3>Looking forward</h3>
While this past year brought us improved ALS treatments, support services, and increased focus on mental health, let’s continue to keep our focus on the goal: a cure for ALS.
I believe it&#8217;s possible. I look forward to the day when I read the grand announcement that there will be a world without this disease.
While we wait for that day, let’s help each other learn to live well while we&#8217;re <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Just ask and ALS patients will tell you what we want: a cure

For a while now, I’ve been keeping tabs on the new technologies of virtual assistants, voice activation, and artificial intelligence (AI), especially its potential benefits for the <a href="https://alsnewstoday.com/what-is-als/">ALS</a> community. Some of it I’ve tried, with iffy results. Others, like AI, are on my wish list to help erase ALS altogether.
Here’s a quick look at what I’ve been doing.
The introduction of voice activation and virtual assistants happened a few years before I began experiencing my ALS-related voice issues in 2017. At that time, I read that the software would quickly learn its owner&#8217;s voice inflections, especially those who speak English with a heavy foreign accent. So figuring mine was just an “ALS accent,” I held high hopes that our new Echo Show and Alexa devices would help me.
But no amount of repetition, variation in tone, or cajoling on my part would activate the devices. Or if they did hear me, their responses left me feeling I was a contestant in an online comedy game show. Eventually, I gave up trying and used the text-to-talk app on my cellphone, to direct its automated voice to speak to my devices.
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On the positive side, being rejected by technology motivated me to begin a quest <a href="https://alsnewstoday.com/columns/pronunciation-drills-esl-students-help-improve-my-als-speech/">to improve my pronunciation</a> and speaking skills. I even bought a <a href="https://alsnewstoday.com/columns/microphone-voice-hear/">personal microphone</a> to increase the volume of my voice.
Now, several years later, our Echo Show and Alexa still don’t recognize my voice, but the humans around me do. I&#8217;m actually grateful for the push to be mindful of my speech, breathing, and pacing of words.
<h3>Smart homes</h3>
While I know they exist, my husband and I haven’t yet ventured into the world of smart home appliances. That&#8217;s mostly because they were initially only activated by voice, and well, that&#8217;s not a good match for me.
Now, options exist to connect a smart home’s devices to each other and control them via a smartphone or tablet, but we’ll still pass — although I’ve read many positive accounts from other ALS patients who live with smart home technology.
<h3>AI, oh my!</h3>
Artificial intelligence is the wave of the future and will soon become dominant in our lives. I applaud its ability to gather data quickly, analyze them, and produce an answer. This we need for ongoing <a href="https://alsnewstoday.com/news/identifying-early-signs-als-may-be-aided-by-pisons-ai-powered-technology/">ALS research, diagnosis</a>, and, ultimately, to discover a cure.
But I’m on the fence about other applications of AI. For example, I don’t think it could <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">write this column</a>, capturing the experience of <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a> or sharing motivational strategies.
Technology can provide valuable assistance to those of us living with physical disabilities. But we need to remain cautiously optimistic about those future possibilities.
Right now, we have one another. Right now, we&#8217;re the best option to help one another learn to live well with ALS.
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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, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, 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: ALS cure

Just ask and ALS patients will tell you what we want: a cure

Can automated technology — including AI — help with ALS?