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Accidents can and will happen. Do you have a plan for when they do?
The two accidents I&#8217;ve feared the most since being debilitated with <a href="https://alsnewstoday.com/what-is-als/">ALS</a> are getting scalded in the shower and smashing my toes against the wall or any other object when I&#8217;m in my wheelchair.
I saw a YouTube video about a young ALS patient whose feet were immersed in water that was too hot, but he couldn&#8217;t get the caregiver&#8217;s attention to remove his feet from the water. He suffered serious burns from that accident.
I&#8217;ve had a couple of minor hot water issues, and smashed toe accidents, too; fortunately, I had no long-term effects. Still, one emotion that accompanies being totally vulnerable is <a href="https://alsnewstoday.com/columns/choosing-home-health-agencies-fear-double-edged-sword/">fear</a>. It&#8217;s always there, lurking in the shadows and ready to jump out anytime.
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My recent thoughts on accidents and incidents have turned to other possibilities — namely, that something could happen to our <a href="https://alsnewstoday.com/columns/who-cares-for-als-caregiver/">caregivers</a>. While leaning back in the shower one day, I thought about my attendant slipping and hitting her head. What would I do if she were unconscious? How would I right myself? I can&#8217;t lean back for too long because of my shallow breathing and weak diaphragm. I need my <a href="https://www.patientcare.shop.philips.com/Philips-Global-Category/hospital-respiratory-care/hospital-respiratory-ventilation/respironics/trilogy-ev300-hospital-ventilator/p/989805661881?salesOrg=US90&amp;_ga=2.39322531.1482519603.1674764567-137826464.1641591043&amp;gclid=CjwKCAiA-P-rBhBEEiwAQEXhHztGgC7fhucSx_7N_Uf7DcGYW_g0CyZ80Vf78ig1cTiqE2tPzwVN1hoCaCYQAvD_BwE&amp;gclsrc=aw.ds">Trilogy breathing equipment</a> during extended periods of being on my back.
A myriad of accidents can happen to patients and caregivers. How can we reasonably <a href="https://alsnewstoday.com/news/disaster-preparedness-inadequate-als-patients-caregivers-japan/">prepare for those contingencies</a>? During the few times most ALS patients are alone, any number of life-changing events can occur.
I saw a video of a man whose wife takes care of him. After attending to him, she left him alone in his wheelchair for what she thought would be a relatively short period of time. When she returned, he was slumped forward with his head leaning down, which made it <a href="https://alsnewstoday.com/als-symptoms/difficulty-swallowing/">hard for him to breathe</a>. His wife said he would&#8217;ve died had she not come back when she did.
One of my constant thoughts and concerns is about my wife having an accident either when she&#8217;s home or away. She&#8217;s been my primary caregiver. If she were unable to do that any longer, it&#8217;d be catastrophic. I have no other family members or friends who could step in to fill the void, so I&#8217;d thus be relegated to <a href="https://alsnewstoday.com/columns/tips-als-caregivers-outpost-respite-care/">a nursing facility</a>, in which I&#8217;d spend my last days.
<h3>Readiness with awareness</h3>
So accidents, although they can&#8217;t all be stopped, must figure in to our plans for what we&#8217;ll do in an emergency. Some questions we could face:
How will we contact someone to help us if we find ourselves in an untenable position?
How much can we prepare for the unknown? Is there a way for the fire department to know that you have ALS and require priority response? Is there a neighbor who can check on you regularly? Do you have a backup plan for power outages?
What would we do if our lifelines malfunction — meaning our cellphones and eye-gaze computers? Is there some hands-free, voice-activated device available in our area? Some of us have no or few emergency resources, especially proactive resources, that we can depend on.
Here&#8217;s some advice that may help you prepare.
You should do a situational analysis of your environment to identify your weaknesses and then address each one. For instance, should caregivers have an accident and be immobile but conscious, a push-button emergency device would be a good tool for them.
Second, you should have a visible note in your car to the police or fire department, advising them that you&#8217;re at home with ALS and need help. How about an alarm in the house that sounds every 10 minutes or so to alert the caregiver that you&#8217;re alone and should be checked? Last one: If it&#8217;s allowed in your community, install an outside alarm or an LED light that flashes to alert passersby.
This issue is a serious one for all ALS patients. When we&#8217;re aware that accidents can and will happen, the least we can do is look for ways to ameliorate or mitigate them.
Please share your suggestions below on how to prepare for accidents. And have a safe holiday season.
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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.

Preparing for accidents that will happen, guaranteed

A few weeks ago, I had a long conversation with a stranger I met while traveling. She was a bold and smart young woman who shared tales of her solo trips as we flew. She insightfully concluded that travel had made her more resilient, aware, and resourceful.
I agreed. Growing up, I spent several years living in Germany, developing a love of travel and a level of comfort being on my own. Those experiences helped transform me from a timid, self-conscious kid into one who&#8217;d learned to trust her own instincts and talents. Other things can provide this same confidence, such as athletics, service, and advocacy.
As we continued talking, my new friend revealed that she’d gotten a tattoo to commemorate her adventures and share her philosophy on life. Her tattoo was simply the word &#8220;fearless.&#8221;
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I smiled on hearing this. It was just the tattoo I might have chosen a few short years ago. At the time, I too believed myself fearless, proud of doing what I saw as scary things: skydiving, taking a flying lesson, zip lining 700 feet above the forest floor in Costa Rica. I equated physical risk and <a href="https://www.npr.org/sections/health-shots/2019/11/01/775198994/the-science-of-scary-why-its-so-fun-to-be-freaked-out">seeking adrenaline </a>with bravery, and compared frightening myself to personal growth.
<figure id="attachment_81538" aria-describedby="caption-attachment-81538" style="width: 285px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-81538 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/01/riding-in-ireland-aug-2019-285x380.jpg" alt="Two women wear riding gear and helmets as they ride horses through a shallow pond in Ireland. The horse on the left is dark brown, while the horse on the right is brown and white. The women appear to be laughing." width="285" height="380" data-wp-pid="81538" /><figcaption id="caption-attachment-81538" class="wp-caption-text">Juliet, right, and a friend ride horses in Ireland in 2019. (Courtesy of Juliet Taylor)</figcaption></figure>
I am no longer fearless.
<h3>A different kind of fear</h3>
When my late husband, Jeff, was diagnosed with <a href="https://alsnewstoday.com/what-is-als/">ALS</a> in 2018, I got a crash course on <a href="https://alsnewstoday.com/columns/choosing-home-health-agencies-fear-double-edged-sword/">fear</a> in a way that was incomprehensible to pre-ALS me. Previously, I’d understood fear to be a fleeting response to a scary event, something to be managed, overcome, and conquered, subsequently filling me with pride.
The type of fear that arrived when <a href="https://alsnewstoday.com/columns/how-love-conquered-fear-after-husbands-als-diagnosis/">Jeff was diagnosed</a>, then as we lived with his disease for 19 months, and for me now as his surviving partner is altogether a different emotion. This new fear — of the loss of people I love, of human suffering, of the seeming randomness of life — has no quick fix, nor should it.
There was no response other than fear when Jeff’s neurologist said, simply and without fanfare, “You have ALS.” I thought somehow this discussion, which we knew was coming, would be more momentous. Instead, it was simply three words delivered in a windowless, unremarkable room, with me knowing as it happened that this was the scariest moment of my life. I walked out of that exam room a different person from who I was when I walked in.
There was nothing but fear when Jeff fell in our gravel driveway and I had to make our first 911 call, knowing that I couldn’t lift his 260-pound, once-strong body and realizing for the first time that I couldn’t provide something he needed, and we couldn’t outsmart or outrun ALS.
I know today that fear, while uncomfortable, is valuable because it shows us what’s important in our lives so we may seek to protect it. We can try to fight fear with knowledge, faith, preparedness, or all three. But there’s no shame in recognizing and experiencing an emotion that highlights our priorities and reminds us that maybe we can’t do this alone, and that vulnerability is a part of being human.
For Jeff and me, the most powerful things that stood up to fear were speaking its name and going through it together. On one occasion, in a particularly frightening medical situation, I asked Jeff if he was scared, and he nodded. We were holding hands; I told him I was scared, too. When we locked eyes and smiled — he could no longer speak — fear lost its power over us in that moment.
Today, I embrace no longer being fearless. I am still, I hope, the confident and joyful person I aspire to be. I’m still up for an adrenaline-inducing adventure, and it’s still exhilarating to do so. But I don’t take unnecessary risks.
I like to think now that fear is an indicator of how much, and whom, I value in my life, and how much I have to lose. Fear reminds me that I love deeply, and I hope fervently. Fear requires giving up the illusion of control over life in the face of those things. The only solution I’ve discovered is to recognize it, name it, and then live and love fully in the face of it.
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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: fear

Preparing for accidents that will happen, guaranteed

How Fear Can Show Us What’s Important