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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.
[recommended-reading id=81111]
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.
<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.

Preparing for accidents that will happen, guaranteed

Last month, a series of health issues bombarded me. They flew in on top of my usual <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a>, causing me to become frustrated and ask, “Has this become my new normal?” But the advice I once received from a TV game show host rescued me — advice that continues to help me carry on when life’s curveballs head my way.
My month of health challenges began when I got my <a href="https://alsnewstoday.com/information-about-covid-19-als-patients/">COVID-19</a> booster and — typical for me — felt the side effects of a sore arm, body aches, and blah feelings. Then a few days later I caught a cold, accompanied by a dry cough. I armed myself with a powerful cough syrup, which unfortunately gave me the wobbles. I misstepped and twisted my foot. Argh! Limping and coughing while pushing a rollator are not fun at all.
While waiting for the cold to disappear and my foot to heal, I spent time looking back to when I first heard the words that give me guidance today.
[recommended-reading id=84352]
<h3>A special seatmate</h3>
A number of years ago, my husband and I were returning from a trip overseas, and just before boarding our flight to the U.S., he gave me good news. “We’ve been bumped up to first class, but we’re not sitting together. Are you OK with that?”
Extra leg room and comfortable seats for a multihour flight? I quickly agreed to the new arrangement.
Boarding, I was led to the very first row, seat 1A, and I thought things couldn’t get any better. The seat next to me was empty, but within a few minutes, the occupant showed up. I recognized him immediately; it was <a href="https://www.imdb.com/name/nm0355937/">Monty Hall</a>! As the host of the TV game show &#8220;<a href="https://www.cbs.com/shows/lets_make_a_deal/about/">Let’s Make a Deal</a>,&#8221; Monty was known for pressing contestants to choose between unknown options and surprising audience members with questions such as, “Madam, do you have a hard-boiled egg in your purse?” If they produced one, they won money.
We exchanged pleasantries during takeoff, all while I imagined the fun to be had with him as my seatmate. But once we hit cruising altitude, the fasten seat belt light flicked on and the pilot announced we’d be flying into turbulence.
Turbulence? It was rough and relentless.
Noticing my death grip on both armrests, Monty turned to me and said, “You know, I’ve flown this leg many times, and there are always some bumps.” Knowing he had my full attention, he added, “Flying is much like riding a speedboat over waves. Instead of hitting waves of water, we’re skipping over waves of air.” In his calm, smooth TV voice, he continued the comparison, explaining how the bumps are only temporary annoyances and just a variation of the natural wind currents. “We’ll soon find calmer air,” he added, his voice trailing on.
As my mind followed his words, my hands slowly relaxed.
Although we couldn’t unbuckle our seat belts for the entire flight and Monty and I never had the opportunity for light chitchat, I&#8217;ll always be grateful for his advice. In fact, I still use it as an analogy today, now that I have <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
<h3>Using Monty&#8217;s advice today</h3>
Instead of water waves and airwaves, <a href="https://alsnewstoday.com/columns/how-i-resist-attack-small-stuff-while-living-with-als/">life’s curveballs</a> are the cause of the occasional turbulence I experience now.
When I’m experiencing the curveballs or <a href="https://alsnewstoday.com/columns/taking-time-mentally-exhale-while-living-with-als/">“bumps” of life</a> and they’re coming at me too fast and too strong, I think back to that special flight with Monty Hall. I hear his calm, soothing voice assuring me, “The bumps are temporary. We’ll soon find calmer air.” They&#8217;re words that reassure me and give me hope.
<h3>A postscript on Monty</h3>
I was saddened to learn of Monty’s passing in 2017, and after reading about his life, I came across an interesting fact. When not on TV, he was an avid fundraiser and received the <a href="https://www.gg.ca/en/honours/canadian-honours/order-canada">Order of Canada</a> for his charitable works for the Variety Clubs International and the <a href="https://www.mda.org/">Muscular Dystrophy Association</a>. So I double thank you, Monty Hall!
Let’s resolve to learn to live well while we <a href="https://alsnewstoday.com/living-with-als-2/">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.

How advice from a ‘Let’s Make a Deal’ host helps me live with ALS

On the ski trail the other afternoon, I was feeling discouraged. I hadn’t slept well the previous couple of nights and had a low-grade headache, but I willed myself to keep going. Exercise is good for my body, and <a href="https://alsnewstoday.com/columns/how-daily-nature-therapy-helps-relieve-my-stress/">being in nature usually soothes my mind</a>. They&#8217;re two of my biggest coping mechanisms in dealing with <a href="https://alsnewstoday.com/columns/breathe-stress-relax/">the stress</a> of living with my husband’s <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
I skied my favorite path through birch trees, but the forest didn’t work its magic on me that day.
But then my phone dinged. I opened a message from a member of an ALS Facebook group. On occasion, people reach out to me because we&#8217;ve been at this for so long.
[recommended-reading id=80134]
It’s been almost 13 years since Todd’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a>. I remember those early days when our life had derailed. Todd was 39 years old. I was 32. We had a 4-year-old and a 9-month-old. The diagnosis was devastating, and I couldn’t imagine how we&#8217;d ever be OK. It was helpful for me to talk with another spouse caregiver who&#8217;d been at this for years.
Now, I&#8217;m the veteran spouse caregiver. I feel like we’ve navigated the last decade well, considering the circumstances. Life with paralysis is hard, and it only gets harder with a progressive disease.
Over the past year, Todd has needed <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">breathing support</a>, and he&#8217;s since become homebound and sometimes counts the hours until bedtime. We&#8217;re often bored day to day, interrupted with occasional frenzied activity to clear his lungs. Life increasingly feels like a slog for both of us.
What could I offer this other caregiving spouse in my discouraged state? I came up with a few things that rang true, even in my funk:
<ul>
<li>Give yourself time to process and grieve. It took both of us at least a year to come to some sort of acceptance.</li>
<li>If your spouse still has functionality, take a special trip if you can. Make memories and take a lot of pictures. <a href="https://teamgleason.org/adventure/">Team Gleason</a> helps people with ALS fund trips.</li>
<li>It’s hard to live with a disease that gets progressively worse, but there have been good moments in our years <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>. And for those of us who have <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">children</a> (or grandchildren, nieces, or nephews), we can find vicarious joy in watching our kids experience new things and grow up.</li>
</ul>
Sometimes it’s easier to find perspective for others than for oneself — and after sending my reply, I felt my spirits lift a bit.
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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.

Tag: advice

Preparing for accidents that will happen, guaranteed

How advice from a ‘Let’s Make a Deal’ host helps me live with ALS

Supporting those new to ALS with lessons from my experience