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Having possible symptoms of <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) increases the chances of getting an ALS diagnosis by nearly five times, but getting diagnosed is more likely for people in urban areas, who have greater access to specialized care, a U.S. study shows.
People in rural areas are diagnosed at a later age and their diagnosis is more dependent on major ALS-specific <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a>, such as muscle weakness and difficulty swallowing or speaking.
The findings underscore the “need to accelerate the detection-to-diagnosis timeline of ALS,” particularly for underserved populations in rural areas, the researchers wrote in “<a href="https://www.tandfonline.com/doi/full/10.1080/21678421.2024.2315185">Rurality modifies the association between symptoms and the diagnosis of amyotrophic lateral sclerosis</a>,” which was published in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.
ALS is <a href="https://alsnewstoday.com/causes-of-als/">caused</a> by progressive damage to motor neurons, which are specialized nerve cells responsible for voluntary muscle movements. Evidence suggests early symptoms may appear about a year before the disease is formally diagnosed. These symptoms are often ambiguous, however, and can be missed in many patients, especially where access to specialists is limited, such as rural areas.
Here, researchers in the U.S. studied the association between possible ALS symptoms and a later diagnosis, and whether that association changed in urban or rural areas.
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<h3>Chances of an ALS diagnosis</h3>
The scientists used national insurance claims-based data from 2001 to 2021. The study included 19,226 people newly diagnosed with ALS and a control group of 96,126 people without ALS, who were matched to patients in age, sex, and enrollment period.
The researchers considered eight groups of symptoms as possible signs of ALS: speech problems, swallowing problems, muscle strength, gait problems, involuntary muscle movements, pain, falls, and other symptoms. The symptoms were assessed up to a year before the diagnosis.
A greater proportion of those who were later diagnosed with ALS had at least one possible symptom than those who weren&#8217;t diagnosed with the disease (83.7% vs. 50.7%). There were also more patients than controls with four or more symptoms before a diagnosis (25.5% vs. 4.7%).
Having at least one possible ALS symptom increased the chance of a diagnosis by 4.92 compared with not having a symptom, statistical analyses indicated. Also, as the number of symptoms increased, the likelihood of a diagnosis increased — being 33.2 times more likely in people with five symptoms.
The participants who lived at any time in an urban area were 44% more likely to be diagnosed with ALS than those in rural areas.
Both having possible ALS symptoms and living in an urban area increased the chances of an ALS diagnosis. The difference between urban and rural areas was smaller among those who showed symptoms, however. This means “having a possible ALS symptom reduces the urban bias of ALS,” said the researchers, who then showed the association between possible ALS symptoms and a diagnosis was evident at least a year before a diagnosis, suggesting &#8220;ALS symptoms may start appearing and being noted clinically at least [one] year before the diagnosis of ALS is made.&#8221;
Next, as differences in ALS incidence in urban and rural areas hadn&#8217;t been reported, the researchers hypothesized that the differences in diagnosis resulted from greater access to care in urban areas. This would probably result in being diagnosed at an earlier age in these regions, which analyses confirmed.
“If the age-dependent incidence of ALS is similar between urban and rural places, this finding would suggest people with ALS are being diagnosed earlier in their disease course and with presumably lower symptom burden when they live in urban areas,” wrote the researchers, who noted that “rural populations, which are disproportionately elderly and face limited access to specialist care, are more dependent on major symptoms to arrive at a diagnosis.&#8221;

Rural living may widen gap between early ALS symptoms, diagnosis

One of my duties as a moderator for the <a href="https://alsnewstoday.com/forums/">ALS News Today Forums</a> is to encourage new members to discuss their worries about <a href="https://alsnewstoday.com/living-with-als-2/">living with the disease</a>. I often find myself repeating the same advice over and over: that they be open to changing their perspective, that they alone are responsible for their attitude, and that they shouldn&#8217;t discount how humor can help perspective and attitude.
Many members are <a href="https://alsnewstoday.com/newly-diagnosed-you-are-not-alone-on-your-journey/">newly diagnosed ALS patients</a> who are stuck imagining end-of-the-world, worst-case scenarios of their disease. Envisioning total paralysis, inability to speak, and dependence on a feeding tube for nourishment, they ask, “What if that happens to me?”
I’ll admit that after receiving my <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis of ALS</a> in 2010, my thoughts were the same. But I also knew that those scenarios had not yet happened to me. And maybe, if I followed my doctor’s recommendations and took care of myself and my attitude, I could extend the time of my <a href="https://alsnewstoday.com/symptoms-of-als/">symptom progression</a>.
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I also found inspiration from the memoir &#8220;<a href="https://www.beacon.org/Mans-Search-for-Meaning-P602.aspx" rel="nofollow">Man’s Search for Meaning</a>,&#8221; by the neurologist, psychiatrist, and Holocaust survivor <a href="https://www.viktorfrankl.org/lifeandwork.html" rel="nofollow">Victor Frankl</a>, and especially <a href="https://www.psychologytoday.com/us/blog/everyday-resilience/202207/humour-pillar-resiliency">one particular quote from him</a>: “Humour more than anything else in the human make-up, can afford aloofness and an ability to rise above any situation, even if only for a few seconds.”
Humor is something I rely on to help me live with <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. A fun, change-of-perspective example is when I challenged myself to find something, anything, positive about my ALS symptoms.
My current symptoms include weak legs and feet, as well as speaking and swallowing difficulties. Here is the tongue-in-cheek result of that thought experiment.
<h3>A positive view</h3>
Because most of my exercise routines are done on the floor, I can relive my childhood! Crawling, rolling, and other simple movements are far from the complicated aerobics I used to do. But while I&#8217;m on the floor, I let myself enjoy being a kid again. A side benefit is that I can also locate items lost under our living room chairs.
Having slow speech has probably saved me from interrupting heated discussions with an impulsive remark or snappy reply. In my mind, I’m thinking of a billion possible quips. Instead, I’m left listening, choosing my words carefully, and responding when it’s my turn to speak. Not as fun, but certainly civilized and much safer.
<a href="https://alsnewstoday.com/columns/als-hard-act-swallow-tips/">My swallowing issues</a> remind me to follow my mother’s warnings and advice. “Take small bites, eat slowly, and never talk with your mouth full,” she&#8217;d always say. It&#8217;s funny that all my past years of speed-eating in college have been successfully corrected by ALS.
<h3>Life comes with change</h3>
That’s the thing about life with ALS: Change can happen at any time, and then again, not happen for a long while. And it doesn’t matter if we are holding our breath bracing for the next worst thing; as long as our mind is at a standstill, we are not living.
Remember, many factors influence our quality of life with ALS. But only one factor exists that you, the patient, can have a direct influence over. That&#8217;s your attitude. And let a good part of that attitude include humor. It’s one more way we can to 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, 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.

How a changed perspective and a little humor help me with ALS

Blocking certain inflammatory signaling pathways may be one way to reverse nerve cell alterations that drive the symptoms of <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS), according to preclinical research using a mouse model of the disease.
In the mice, an ALS-associated mutation in the FUS gene caused caused motor neurons — the nerve cells involved in motor control — to lose the branches and connections needed to function properly. It also disrupted cellular energy production and caused neuroinflammation, a complex inflammatory response typically seen within the brain or spinal cord.
A blockade of the inflammatory signaling pathway NF-kappa B was shown to reverse these cellular changes and improve motor and cognitive function in these animals.
In addition to further elucidating the role of FUS in driving <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a>, the study indicates that &#8220;modulation of the [NF-kappa B] pathway &#8230; is an important therapeutic approach to attenuate disease,&#8221; the researchers wrote.
The study, &#8220;<a href="https://actaneurocomms.biomedcentral.com/articles/10.1186/s40478-023-01671-1">Neuronal dysfunction caused by FUSR521G promotes ALS-associated phenotypes that are attenuated by NF-κB inhibition</a>,&#8221; was published in <a href="https://actaneurocomms.biomedcentral.com/">Acta Neuropathologica Communications</a>.
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<h3>Investigating the impact of FUS gene mutations on motor neurons</h3>
ALS is characterized by the degeneration of motor neurons, the specialized nerve cells involved in motor control. <a href="https://alsnewstoday.com/causes-of-als/#Genetics_of_ALS">Mutations</a> in FUS are thought to underlie the disease in about 5%-10% of people with <a href="https://alsnewstoday.com/forms-of-als-familial-als/">familial ALS</a> and less than 1% of those with <a href="https://alsnewstoday.com/sporadic-als/">sporadic ALS.</a>
These mutations lead to the production of an abnormal version of the FUS protein that toxically accumulates in the wrong part of the cell. While the FUS protein is normally seen in the nucleus — the core of the cell where DNA is housed — ALS-associated FUS instead gathers outside the nucleus in the cytoplasm and disturbs cellular function.
In mouse models, FUS mutations are associated with motor and cognitive deficits, activation of cells that promote inflammation, and structural changes to motor neurons that are also seen in the human condition. Specifically, motor neurons are found to lose dendrites, the branches they use to reach out to and communicate with other cells. The synapses, or connections, made with other cells via structures called dendritic spines also are lost.
Despite this knowledge, gaps still remain in scientists&#8217; understanding of how FUS mutations lead to these neuronal changes and contribute to disease progression.
Now, a team of researchers from Laval University, in Canada, genetically engineered mice to house a human ALS-associated FUS mutation specifically in neurons, using them to further explore the effects of FUS. 
At 1 month old, these mutant mice exhibited cognitive defects and reduced dendritic branching of upper motor neurons — the motor neurons that originate in the brain and travel to the spinal cord.
By 6 months of age, loss of dendritic branches and synapses had spread to affect the lower motor neurons, or those that travel from the spinal cord and innervate the muscles to coordinate movement. This was accompanied by progressive motor impairments.
A number of other cellular alterations also corresponded with the deteriorating cognitive and motor function of the mice. This included mis-localization of mutant FUS to the cytoplasm and signs of dysfunctional mitochondria, which are cells&#8217; energy-producing organelles.
Moreover, activation of <a href="https://alsnewstoday.com/news/astrocytes-microglia-als-friends-foes-amyotrophic-lateral-sclerosis/">astrocytes and microglia</a>, the nerve support cells (glia) that can drive neuroinflammation, was observed in the symptomatic mice.
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<h3>Researchers use compound based on plant used in traditional Indian medicine</h3>
Activation of the NF-kappa B inflammatory signaling pathway — a series of molecular events that cells use to respond to signals of inflammation or infection — is thought to promote glial activation in ALS and other neurodegenerative diseases. That, in turn, has been linked to motor neuron damage and disease progression.
As such, the researchers aimed to investigate whether blocking inflammatory signaling might help restore more normal nerve cell connections and ease symptoms.
To that end, they treated the mice with the NF-kappa B inhibitor IMS-088, a synthetic compound based on the naturally occurring Ashwagandha plant.
That plant has been &#8220;used for thousands of years in traditional Indian medicine,&#8221; Chantelle F. Sephton, PhD, assistant professor at the University of Laval and the study&#8217;s senior author, said in a <a href="https://salledepresse.ulaval.ca/2024/01/10/sla-bloquer-linflammation-pour-reduire-les-symptomes-a:7163fae3-28bf-45c7-ba00-218cd8782b65">press release</a>.
The treatment reversed many of the observed cellular deficits, leading to restored motor neuron dendrites and synapses, reduced glia activation, decreased FUS mis-localization, and increased mitochondrial function. This was accompanied by cognitive and motor improvements.
&#8220;Neurons regenerate without activated immune cells,&#8221; Sephton noted.
&#8220;The dendrites of motor neurons start to grow and make connections again, increasing the number of synapses between motor neurons and muscles,&#8221; Sephton said.
Lab studies of neurons from the mice further indicated that IMS-088 treatment promotes more normal mitochondrial function.
Altogether, the researchers believe the findings demonstrate the key role of neuroinflammation in ALS disease processes.
&#8220;Future studies will examine the mechanistic actions of inhibiting the [NF-kappa B] pathway on FUS function and the dynamic interplay between pro-inflammatory signals and mitochondrial function,&#8221; the team concluded.
The findings likely also have implications for other related diseases, including frontotemporal dementia (FTD), a neurodegenerative disease that has significant clinical and cellular overlap with ALS, as well as other inflammatory neurodegenerative conditions.

Blocking signaling pathways may reverse nerve cell changes in ALS

Pregnancy can worsen the progression of <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS), regardless of whether symptom onset occurs before or during pregnancy, according to a review study.
Still, most of the cases reviewed showed that ALS did not affect a woman&#8217;s ability to give birth, naturally or by cesarean section, or the health of the newborn.
“While pregnancy with ALS is likely to &#8230; result in giving birth to healthy infants, it could be associated with rapid or severe progression of ALS and result in a worse prognosis [likely disease course],” the researchers wrote. “Due to the rarity and complexity of ALS during pregnancy, there is a need to enhance our understanding of the disease and its management in this context.”
The review study, “<a href="https://link.springer.com/article/10.1007/s10072-023-06994-4">Clinical characteristics, course, and outcomes of amyotrophic lateral sclerosis overlapping with pregnancy: a systematic review of 38 published cases</a>,” was published in the journal <a href="https://www.springer.com/journal/10072">Neurological Sciences</a>.
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<h3>Review of 38 worldwide cases reporting a pregnancy in a woman with ALS</h3>
A progressive neurological disease that affects the muscles, <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a> include muscle weakness and atrophy (shrinkage), leading over time to paralysis. While the condition is typically <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a> in middle age and is more prevalent in men than women, it can occur in younger adults, with isolated cases identified during pregnancy.
Pregnancy can exacerbate some ALS symptoms, challenging its management, and <a href="https://alsnewstoday.com/approved-treatments-for-als/">disease treatments</a> usually are not recommended for pregnant women.
&#8220;Close monitoring and coordinated care between the patient’s healthcare providers are essential to manage the disease effectively during pregnancy and ensure the best possible outcomes for both the mother and the baby,&#8221; the researchers wrote.
However, little is known about the impact of ALS on pregnancy, including how it affects the disease&#8217;s course or the developing fetus.
A team of researchers in Egypt, Jordan, and Algeria reviewed published studies reporting on ALS cases overlapping with pregnancy. They found a total of 26 articles covering 38 worldwide cases of ALS and pregnant women, published between 1993 and 2022.
These women were between the ages of 21 and 42, with 18 pregnancies occurring before the age of 30. ALS symptoms began either before pregnancy (18 cases), during pregnancy (16 cases), or directly after pregnancy (four cases). Among 21 women with a recorded history, seven were having a first pregnancy.
A majority of these patients (55%) experienced rapid or severe ALS progression during their pregnancy, while the others (45%) had stable disease progression. Most cases with onset before pregnancy (61%) and about half of those with ALS onset during pregnancy (46%) had rapid or severe progression while pregnant.
<h3>Respiratory and speech difficulties among noted signs of ALS progression</h3>
Following a pregnancy, most women (63%) also showed rapid or severe progression, with the other 37% having stable progression.
Respiratory insufficiency with a need for invasive ventilation most often marked progression in these women, with <a href="https://alsnewstoday.com/speech-problems/">speech problems</a> (dysarthria) also noted.
Of the 37 cases reporting on an infant&#8217;s delivery, 35 (95%) noted successful live births and two were stillbirths. Most patients (67%) did not carry the pregnancy for a full nine months. Cesarean section was the delivery method in 10 cases, vaginal births in nine patients, while the rest were not recorded.
Almost all newborns (86%) were healthy without complications after delivery. Three others had short-term complications, and one infant was born with minor congenital heart defects.
“Our results support the hypothesis that pregnancy increases the potential for severe and rapid ALS progression, regardless of the timing of ALS onset in relation to pregnancy,” the scientists wrote.
Further research is needed, they added, as &#8220;a better understanding of ALS in pregnancy can help guide clinical decision-making and improve outcomes for both the mother and infant.”

Pregnancy can speed ALS severity and progression, review study finds

Swallowing. It’s such a simple thing for most to do. But swallowing can also be a scary maneuver, especially when it turns into an <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptom</a> called <a href="https://alsnewstoday.com/als-symptoms/difficulty-swallowing/">dysphagia</a>. I began experiencing it about four years after my initial <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a>. And because that was nine years ago, I’m sharing a few tips and the lessons I’ve learned within that time.
In my column “<a href="https://alsnewstoday.com/2018/07/17/als-hard-act-swallow-tips/">When ALS Becomes a Hard Act to Swallow</a>,&#8221; I describe my first days of dysphagia.  I wrote about calmly sipping coffee one morning till I suddenly felt the hot liquid traveling straight down into my lungs. Luckily, a few minutes of nasty gagging, coughing, and gasping for air saved me from having to dial up my local EMTs. A follow-up visit to my <a href="https://alsnewstoday.com/what-is-als/">ALS</a> clinic confirmed the diagnosis.
With my form of dysphagia, I can chew and swallow normal foods, but I have to add a powdered thickener to all my liquids.
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<h3>Too much powder</h3>
In restaurants, I used to feel embarrassed about having to drink a thickened beverage and invented various ways to blend in with other diners. One strategy was to order a cup of coffee and stir in the powder from a repurposed pill bottle that I carried in my purse. But I soon realized that the act of thickening my coffee at the table and drinking it with a straw drew way too many stares from diners.
To add to my frustration, the pill bottle once came open in my purse, coating everything inside with a yucky, sticky powder. It was obvious I needed a better way to prevent such an unfortunate incident, as well as strengthen my self-confidence.
Now, I follow the simple (and much more logical) method of bringing my premixed drink in a kid-size sports bottle with a built-in straw. The bottle is small and inconspicuous, and the restaurant staff doesn’t mind. I sit and sip with an air of confidence. Funny thing, when I looked around the room, I realized people were so self-absorbed in conversations or typing on their phones that no one was noticing me anyway.
<h3>Focus and strength</h3>
By far, one of the most important lessons I’ve learned from having dysphagia is the interconnectedness of our bodies. Let me explain.
Swallowing, for me, has become a maneuver best done with absolute focus and good posture. I’m careful to minimize distractions while eating, such as reading, watching TV, or having conversations. Conversations? Yes. I follow a personal rule of never talking while eating. Well, it’s not quite that severe; I make sure that I chew and swallow completely before answering someone’s question. It also helps that if the meal includes conversations, I take smaller bites of food or focus on the discussion entirely and <a href="https://alsnewstoday.com/columns/2017/06/13/als-and-dining-out-helpful-tips-on-how-to-prepare-in-advance/">take my leftovers home in a box</a>.
Practicing <a href="https://alsnewstoday.com/columns/sitting-too-much-3-tips/">good sitting posture</a> while eating and drinking helps prevent further swallowing issues. The best way to keep myself from slumping and slouching is to strengthen my back, neck, and abdominal muscles, which validates the <a href="https://alsnewstoday.com/columns/movement-exercise-daily/">morning and evening exercises</a> I do each day.
Finally, I’ve learned to adjust and adapt, and I&#8217;m always ready to move on to the next solution. Although our ALS symptoms may vary from one patient to another, we all share the same wish of finding the best way we can continue to live our lives. And I know we can learn to live well while we <a href="https://alsnewstoday.com/living-with-als/">live with ALS</a>.
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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.

Lessons learned from the dysphagia symptoms that come with my ALS

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.

Can automated technology — including AI — help with ALS?

<a href="https://alsnewstoday.com/what-is-als/">ALS</a> has taught me many life lessons, and a very important one is to never give up.
For example, some days I get up, get going, and suddenly notice that one of my body parts isn’t moving as well as the day before. It’s a small, quirky thing, like having a kink in my shoulder, a knee that buckles with every step, or a tongue that won’t form the “th” sound. Of course, I immediately sort through a mental list of possible causes — a list that begins and ends with “Is my <a href="https://alsnewstoday.com/symptoms-of-als/">ALS getting worse</a>?”
Even though my first impulse is to blame the disease, I’ve learned that sometimes I’m the one to blame. And what I’m experiencing is, fortunately, a temporary setback. Let me explain.
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<h3>Mindless mindset</h3>
Sometimes the odd symptom I’m experiencing is the result of an I’m-bored-doing-these-exercises mindset, which I occasionally fall into.
Why? Because even though I have a daily regimen of doing short bouts of easy exercises throughout the day, my mind wanders while I’m doing them. On those days, instead of doing 10 arm circles, I’ll do only six and tell myself I’ll do the full 10 tomorrow. The same thing happens the next day, and the day after that. Soon, I’m wondering why my shoulder is feeling tight.
Blame my ALS? No, I have to blame myself.
I’ve since renewed my commitment to do each exercise with full attention, and even added a few new ones to help keep me focused.
<h3>Slack speech</h3>
Several weeks ago, I was excited about the <a href="https://alsnewstoday.com/columns/pronunciation-drills-esl-students-help-improve-my-als-speech/">improvement in my speech</a> from practicing vocalization drills I found online. Then I spent long days focusing on several writing projects. I skipped my drills entirely. When I finished and wanted to read a passage out loud to my husband, I was shocked at my difficulty in pronouncing certain words. Was my ALS getting worse?
No, it was my fault. I shouldn’t have slacked off.
I’ve since created a special time of day to practice my vocal drills and haven’t missed a session yet. My “th,” “rrr,” and &#8220;ka&#8221; are much better, and I&#8217;m feeling more confident when conversing.
<h3>Life’s trials</h3>
Then there was the long disruption that happened to me last year when <a href="https://alsnewstoday.com/columns/covid-19-recovery-few-weeks-staying-positive/">I came down with COVID-19</a>. I thought it would last only a few days, but it actually knocked me back for two weeks, plus two more weeks of coughing and feeling weak and fatigued. All my ALS symptoms were amplified. I felt all my past months of fitness gains slipping away and had to <a href="https://alsnewstoday.com/columns/how-als-teaching-me-start-over-again/">start over again</a>.
Blame ALS? No, it’s a one-off occurrence and not likely to happen again.
I could easily have given up after each of these setbacks and not tried to regain what I lost. I didn’t, because I knew that I was dealing with impostor symptoms of ALS — the <a href="https://alsnewstoday.com/columns/exercises-helped-me-handle-learned-nonuse-cross-my-legs/">disuse atrophy</a> I&#8217;ve written about.
<a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> means keeping a whole plate full of health concerns in balance. For me, the mental aspect is one of the most challenging. But by seeing the reality beyond my emotions and applying the right amount of motivation, I can successfully navigate my life with ALS.
I believe this is something we all can do — and you can do it, too.
Together we can learn to live well while living 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.

I have met the enemy, and surprise! It’s not my ALS this time.

I always love having a good &#8220;aha!&#8221; moment, especially when it helps improve how I manage my <a href="https://alsnewstoday.com/symptoms-of-als-2/">ALS symptoms</a>. Better yet is when I learn that what I thought was a symptom of <a href="https://alsnewstoday.com/what-is-als/">ALS</a> was actually an impostor, the result of something called &#8220;learned nonuse.&#8221; Here’s what happened.
As I wrote in my column “<a href="https://alsnewstoday.com/columns/how-shift-into-als-manual-mode/">How I Shift Into ALS Manual Mode</a>,” when I sit in a chair and want to cross my legs, I have to reach down with my hands to help lift one leg over the other. “You have weak hip flexors,” the physical therapist at my <a href="https://www.als.org/local-support/certified-centers-clinics">ALS clinic</a> would tell me.
Hip flexors are a group of muscles toward the front of the hip. They help move or flex the leg and knee up toward the body, as you do when you march, step onto a curb, or cross one leg over the other.
Why were my hip flexors weak? Well, I thought it was just another part of having ALS. But recently I read how patients with neurological conditions like mine experience weakness in certain muscles that would normally be strong, simply because these muscles aren&#8217;t being called into movement.
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<h3>The slippery slope</h3>
Not using these muscles becomes a habit, so the muscles further weaken and finally atrophy to the point of not responding at all. That&#8217;s something I want to prevent for as long as possible.
It’s important to know that this type of atrophy is different from what happens in ALS from the death of motor neurons. <a href="https://www.sciencedirect.com/topics/psychology/learned-nonuse">Learned nonuse</a>, or disuse atrophy, is from a lack of voluntary movement; for most of us, that happens because we&#8217;re <a href="https://alsnewstoday.com/columns/sitting-too-much-3-tips/">sedentary</a>. I&#8217;ll have to admit, I certainly am, since ALS has severely weakened my feet and lower legs.
<h3>My solution?</h3>
I decided to strengthen my hip flexors by following a strategy I used to accomplish 40 chair squats — by being <a href="https://alsnewstoday.com/columns/2019/03/12/squats-als-leg-strength-exercise/">willing to do just one</a>.
While sitting, I’d raise one knee up off the chair, lower it, and do the same with the other knee. Mind you, I could only lift each knee about an inch. But I knew that was OK. I did two lifts on each side in the morning and two again later in the day. Every time I sat down, I’d do two sets of knee lifts. Soon I could do five lifts, and my knees went higher, too.
Feeling confident, I tried some knee lifts while standing with my rollator. This became my new routine: standing knee lifts plus sitting knee lifts.
The other day I called my husband over to watch and showed off how I could perform a seated knee lift so high my knee touched my outstretched elbow. He responded with a “Wow, that’s great. Keep at it!”
Crossing my legs? That’s easy-peasy now.
Of course, I can’t wait for my upcoming ALS clinic visit in March so I can demonstrate my new skill to my physical therapist. For me, this was another lesson in never assuming there’s no hope — and learning that you’ll never know if you don’t try.
Let&#8217;s strive to live well while we <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>.
<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, <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 symptoms