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Disaster preparedness, including stockpiling goods, owning and knowing how to use emergency equipment, and being aware of community resources, is lacking among <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) patients and caregivers, a recent Japanese study suggests.
While patients who needed a ventilator were generally found to be better prepared during power outages or emergency evacuations than those who didn&#8217;t, their awareness was still insufficient, the researchers said.
“Academic societies and local governments have been responding to disaster preparedness for patients with intractable diseases,&#8221; Osamu Kano, MD, PhD, a professor at Toho University in Tokyo, Japan, and the study&#8217;s senior author, said in a <a href="https://www.eurekalert.org/news-releases/1001818">press release</a>. &#8220;We have taken better measures than before, but it is still not enough. We believe that our paper has the potential to provoke and advance further discussion on disaster preparedness for patients with ALS.&#8221;
The study, &#8220;<a href="https://www.sciencedirect.com/science/article/abs/pii/S0967586823002011#:~:text=Patients%20with%20advanced%20ALS%20have,patients%20with%20ALS%20in%20Japan.">The necessity to improve disaster preparedness among patients with amyotrophic lateral sclerosis and their families</a>,&#8221; was published in the <a href="https://www.sciencedirect.com/journal/journal-of-clinical-neuroscience">Journal of Clinical Neuroscience.</a>
In ALS, the loss of nerve cells needed for muscle function leads to <a href="https://alsnewstoday.com/symptoms-of-als/">progressive weakness</a> that affects mobility and breathing. Many ALS patients are wheelchair-bound and require external respiratory support.
Disasters, such as earthquakes, snowstorms, typhoons, or even war, can lead to power blackouts, a big concern for people with ALS, whose life-sustaining equipment relies on electricity. It may also be difficult to transport patients to evacuation centers.
[recommended-reading id=86036]
<h3>Patients not prepared for a disaster</h3>
Because of these, disaster preparedness is critical for ALS patients and may require extra planning. Few reports have investigated how prepared patients are, leading Kano and his colleagues to investigate disaster preparedness among 48 ALS patients and 23 caregivers in Japan where several earthquakes in the last few decades have impacted people receiving at-home respiratory care. The patients (27 men, 21 women; mean age, 60) and the caregivers (mean age, 55.7) responded to a questionnaire.
A quarter of the patients were on a ventilator for respiratory support and 56.5% of the caregivers cared for patients on a ventilator. No patient lived alone — two were hospitalized and the rest lived with caregivers.
Only 28% of survey respondents indicated they were generally prepared for disasters. A significantly lower proportion of those not using a ventilator (10.9%) said they were prepared relative to those that did use one (60%).
About 86% didn&#8217;t have plans for communication if phone lines were down. Fewer than half of the responders indicated they had secured transportation (36.6%), had an emergency contact list (28.2%), had human resources for transport (23.9%), were registered with the government as needing support in an evacuation (23.9%), or had contacted local support centers (12.7%).
There was a general lack of awareness about available resources, such as local government support or intractable disease consultation and support centers, the researchers noted.
About a quarter of participants indicated they didn&#8217;t stockpile food, water, or medical products, but those who used ventilators were significantly more likely to stockpile medicines and sanitary materials than those who didn&#8217;t.
Among those using a ventilator, 52.4% indicated their power supply wouldn&#8217;t be maintained for a half a day or longer after an outage.
In the event of an emergency, the government recommends having backup emergency equipment such as an external ventilator battery and a bag-valve mask, which can be used to manually assist breathing. Of those using a ventilator, 60% had a bag-valve mask and 68% had an external battery. About 12% didn&#8217;t have any of this equipment. For those who did have it, 75% didn&#8217;t know how to use the bag-valve mask and 41% had insufficiently charged external batteries.
&#8220;It is necessary not only to have emergency equipment but also to ensure that it can be used,&#8221; wrote the researchers, who said their study &#8220;shows that patients with ALS and their families without ventilators have a low awareness of disaster preparedness and even the level of awareness among patients with ALS and their families with ventilators is insufficient.&#8221;
Efforts are needed to increase preparedness, they said, noting these could include establishing evacuation centers in communities for patients who need ventilation and maintaining a list of people who would require it.
&#8220;Support from the government and academic societies is essential for these efforts, and the activities of the Disaster Counter-measures Committee, which is currently underway, should be used to further raise awareness of disaster preparedness,&#8221; the researchers said.

Disaster preparedness insufficient among patients, caregivers in Japan

After receiving so many positive comments on <a href="https://alsnewstoday.com/columns/why-im-making-case-als-certification-healthcare-aides/">my last column</a>, I thought it would make sense to give you some real-time information on <a href="https://alsnewstoday.com/columns/tips-als-caregivers-hospital-setting/">my respite care stay</a>, which is how the issue of certified <a href="https://alsnewstoday.com/what-is-als/">ALS</a> caregivers — the topic of that column — arose.
I am one week into a four-week stay and am getting to know a new care team. They are learning about me as well. While it is challenging for both sides, it is also an excellent opportunity to make progress in promoting ALS awareness among caregivers.
Let me stress that I am not writing about this subject to impugn anyone. I have the utmost regard for those who choose to care for others. Oftentimes it is a thankless job, but it is a high calling. I am simply making a small effort to leave the ALS world a little better than I found it.
Thus, my thoughts about ALS caregiving are not competency-based, but rather based on a lack of information and follow-through. Admittedly, ALS and the issues that come with it are esoteric. That makes it doubly important to share information with all segments of the population.
[recommended-reading id=82413]
<h3>We all have different needs</h3>
So what can we do to make it better for everyone involved? I may be naive, but I think the solution is relatively easy to implement. Before a caregiver touches anyone who has ALS, they should know about the patient&#8217;s frailties and peculiarities, because one size does not fit all. Depending on the particular stage of ALS, we patients have <a href="https://alsnewstoday.com/symptoms-of-als/">different physical issues</a>, and it is incumbent upon us to communicate them to others.
For instance, I have very painful joints and cannot be moved haphazardly. I also have <a href="https://alsnewstoday.com/living-with-als/breathing/">breathing difficulties</a>, mostly due to past trauma from the mishandling of my external ventilator. I get quite anxious when no one is nearby to put it on correctly. Additionally, my computer must always be available for communicating with others about my needs.
Some ALS patients require much more attention to their vital needs. Aides and attendants can take a little time to ask patients about special needs and get to know them before doing anything. Patients know their physical needs quite well, so it&#8217;s simply a matter of listening to them.
<h3>Reminding myself why I&#8217;m here</h3>
What I have mentioned thus far is a taste of my own real-time experience. One week in and I&#8217;m trying to get acclimated to my environment. I must get used to being unable to go outside and not succumb to the boring routine of going from bed to chair and eating unseasoned food.
I must always remember that I am away from home not because I am sick, but because <a href="https://alsnewstoday.com/columns/who-cares-for-als-caregiver/">my wife needs a well-deserved break</a> from caregiving. Developing relationships with new caregivers, and perhaps enduring discomfort in the process, are small sacrifices to make on behalf of someone I love.
Here is my situation as I see it: Sometimes I must call for help, but only as a last resort. I am not a whiner nor a complainer. I treat people with respect and genuinely appreciate the help I am blessed to have. Unfortunately, every now and then, I do get loud when my frustration takes over.
I have seen similar frustration in a couple of my aides, and I understand. They have a hard job. But even though they have their own personal problems, they work through them and will not quit until the job is done.
One last thing: My wife and daughter posted <a href="https://alsnewstoday.com/columns/doc-wheres-instruction-manual-living-als/">information and instructions</a> for my care all around my room, which I highly recommend for anyone going into a facility. These posts provide information about every aspect of my condition and how to address everything. Several nurses and aides were complimentary of these posts, saying they helped them a lot.
So although some may characterize this as nitpicking, the issues I have cited are important to ALS patients. In our lives, little things mean a great deal. The slightest adjustment of our bodies or a little lotion on our sensitive skin may seem like minor things to most, but they mean a great deal to us. Passion for one&#8217;s job in healthcare and compassion for one&#8217;s patient are a winning combination.
That&#8217;s about it from my outpost. To my fellow ALS soldiers, I wish you nothing but the best of care and comfort. To those who care for us, please get to know us and have patience with your patients.
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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/als-treatment/">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.

Tips for ALS caregivers from my outpost at a respite care facility

My husband, Todd, and I used to enjoy heading out on adventures, whether it was driving an hour to Chicagoland for an architectural tour of homes designed by Frank Lloyd Wright or flying halfway around the world to Taiwan and visiting a traditional tea house in a small mountain village. But now Todd is paralyzed from <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, and he needs <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">breathing support</a>. He’s more comfortable staying home, and he only goes out for medical appointments.
Todd’s traveling days are over, but we have two teenagers, and we’d like to help them develop wanderlust. Also, our daughter is a junior in high school, and I’m keenly aware that her <a href="https://alsnewstoday.com/columns/clock-starts-ticking-after-diagnosis/">time at home is limited</a>. So for spring break, I decided that <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">the kids</a> and I would go on a nine-hour road trip to downstate Michigan. Our daughter could check out a college, and we’d all experience some big-city fun.
Besides, I was feeling burnt out with <a href="https://alsnewstoday.com/columns/what-i-learned-living-with-als/">caregiving</a>. It wouldn’t be such a hard job if it were only eight or 10 hours a day with weekends off, but it&#8217;s all day, every day. I was exhausted, and I needed a break.
Todd’s sister agreed to come from Minnesota and stay with him, and my mom, who lives next door, would help, too. I hired other caregivers to get him in and out of bed and take care of <a href="https://www.youtube.com/watch?v=Ti23rAGdPR8">toileting</a>. I lined up several people to be on call in case Todd needed his lungs cleared with a <a href="https://www.youtube.com/watch?v=ITcMaevMO04&amp;t=17s">manual assist cough</a>, which was the scariest part about leaving. I’ve had a lot of experience clearing his lungs, and I don’t like being more than 15 minutes away in case of an emergency.
[recommended-reading id=80213]
<h3>Careful consideration</h3>
The night Todd’s sister arrived, and two days before the kids and I planned to leave, Todd’s lungs started filling with mucus. I showed Todd’s sister the technique to clear his lungs, but they kept filling. We needed somebody with more strength, so I called a neighbor. I showed him what to do, and he was able to get the mucus out. I added him to Todd’s emergency contacts list, while I wondered if I should even go on the trip at all.
I needed the break, but Todd needed me, too. I feel like it’s been touch and go the past few years, ever since Todd lost the ability to cough or to clear food from his throat. Life is tenuous. There was a possibility Todd wouldn’t survive the week without me.
But Todd said I should go. I&#8217;d prepared as best I could. I&#8217;d trained Todd’s sister. My mom has some experience helping Todd. A competent daytime nurse would come every morning. Four people were on call, and other caregivers would be helping.
The kids and I drove to the Detroit area on Sunday. That week we visited the Henry Ford Museum of American Innovation, where we saw presidential limousines and sat in the bus in which Rosa Parks had refused to give up her seat. We went shopping at an outlet mall. My daughter picked out a prom dress, and my son got some new athletic gear. While our daughter sat in on some classes at a college, my son and I went to <a href="https://topgolf.com/us/auburn-hills/?gclid=CjwKCAjw586hBhBrEiwAQYEnHSIHP5Xc5K10o56mv2lv0GCzvf0gHs-ANUfxeg9YAo5g1_y8V4P8jRoCCqwQAvD_BwE&amp;gclsrc=aw.ds">Topgolf</a>. We walked around and shopped at a high-end mall and rode go-karts.
<figure id="attachment_83489" aria-describedby="caption-attachment-83489" style="width: 698px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83489" src="https://alsnewstoday.com/wp-content/uploads/2023/04/Joyful-Sorrow-Detroit.jpg" alt="A woman and a teenager stand in the upstairs of a mall. Behind them are columns and decorative butterflies. The woman has brownish-blond hair and wears glasses and a purple print shirt. The teenager has long brown hair and wears a white T-shirt with a design in black." width="698" height="335" data-wp-pid="83489" /><figcaption id="caption-attachment-83489" class="wp-caption-text">Kristin and her daughter, Sara, at a mall. (Courtesy of Kristin Neva)</figcaption></figure>
I sent text messages to Todd about our day’s activities, and I talked to him each evening on the phone. It felt good to relate to him solely as his spouse without needing to wipe his nose or help him on the toilet. I didn’t sleep as well as I&#8217;d hoped — years of being on call as Todd’s caregiver have made me a light sleeper, so the banging of hotel doors and other unfamiliar sounds woke me up at night. But I enjoyed my relaxed mornings, sipping tea and having somebody else cook my breakfast at our hotel’s omelet bar.
Overall, it was a lovely trip. It was mentally stimulating to see new things, and it rejuvenated me for caregiving.
We drove back on Thursday, and upon arriving home, Todd’s sister met me at the door, saying, “Todd says he loves you, and he has to pee.”
There was <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">no easing back into caregiving</a>. I helped Todd in the bathroom and wiped his eyes. Later that evening, I helped him cough.
Being away from home and then coming back made me realize how much I do. It also highlighted how far the disease has progressed; I noticed anew how labored Todd’s breathing is when he isn’t using his noninvasive ventilator. Because I’m with Todd all the time, I sometimes don’t notice the severity of his disability.
Now I’m back in our home routine, and those fun memories the kids and I made are fueling me to keep going.
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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.

Time away from home and ALS fuels me to keep going

In the Jan. 23 <a href="https://podcasts.apple.com/us/podcast/stop-looking-for-the-perfect-job-a-good-enough-job/id1474245040?i=1000595961715">episode</a> of &#8220;The Happiness Lab&#8221; podcast, Simone Stolzoff, author of the book &#8220;The Good Enough Job: Reclaiming Life from Work,&#8221; argues that we should stop hunting for the perfect job.
Stolzoff and podcast host Laurie Santos, a psychology professor, discuss how society&#8217;s view of work has changed over the course of a generation. Today, for example, rather than work being simply a way to pay the bills and support a family as it used to be, we’ve made it a major part of our identity. Stolzoff suggests that we should change our mindset to accept that a job may be just &#8220;good enough&#8221; — meaning that it&#8217;s a means to an end. We can find meaning in other areas of our lives.
Because my husband, Todd, has <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and is paralyzed, he needs a full-time caregiver. I took that unpaid “job” because his <a href="https://alsnewstoday.com/columns/medicare-guessing-game-bureaucracy-rights-dme-hha/">insurance</a> doesn’t cover his care, and I don’t have the ability to make more than what it would cost to hire someone to care for him.
I looked for something I could do from home so I&#8217;d have the flexibility to jump up <a href="https://alsnewstoday.com/columns/secret-finding-balance-caregiver/">whenever Todd needs my help</a>. I’ve written <a href="https://nevastory.com/copper-island-novels/">a series of novels</a> and <a href="https://kristinneva.com/toothella/">a children’s book</a>. I make and sell wreaths at Christmastime. These pursuits have been good <a href="https://alsnewstoday.com/columns/how-im-finding-solace-creative-work-als-caregiver/">creative outlets</a>, but haven’t produced enough income to allow me to do something other than be Todd’s caregiver. So his daily care falls on me.
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At times, I can’t believe this is our life. In a culture that celebrates the American dream and the underdog, it’s hard to live with an incurable disease like ALS. As the disease progresses, <a href="https://alsnewstoday.com/columns/husbands-als-progression-takes-us-different-season-life/">the losses continue</a>, and it becomes hard to accept an increasingly difficult &#8220;new normal.&#8221; I wish we could do what other families do, such as going on vacations, walking on the beach, or even attending concerts or sporting events.
Before we fundraised to hire night caregivers, I wasn’t getting enough sleep, and life was too difficult to say my job was &#8220;good enough.&#8221; When Todd gets a cold or <a href="https://www.youtube.com/watch?v=ITcMaevMO04">needs help coughing</a>, and I wonder if he’ll pull through, the job isn&#8217;t &#8220;good enough.&#8221; When I’m tired, or a night caregiver cancels on me, I can’t get into a positive mental space. In those moments, I wish my husband’s care was not my job.
But on some days, I can say, “It’s good enough,” because in this <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a>, I still have my best friend, we still have our time together, and we have the kids to raise. Those are meaningful things.
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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 caregivers

Disaster preparedness insufficient among patients, caregivers in Japan

Tips for ALS caregivers from my outpost at a respite care facility

Time away from home and ALS fuels me to keep going

‘Good Enough’ Means Something Different in Life With ALS