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For those of us <a href="https://alsnewstoday.com/living-with-als/">living with ALS</a>, every day can have a stressful event. The key, I believe, is to get through the event and, if possible, <a href="https://alsnewstoday.com/columns/sense-of-humor-vital-living-with-als/">remember it later with humor</a>. Even in a parking lot.
“Let’s circle the parking lot one more time,” my agitated husband said.
“No,” I replied, “I think we’re better off staying put.”
We sat motionless in our van, in the middle of the large accessible parking lot of the Tucson Veterans Affairs (VA) Medical Center in Arizona. Thirty generous spaces surrounded us, and of course, all of them were full. It was hot outside, the inside air blowing from our van’s vents was beginning to feel stale, and my husband was losing patience — fast.
[recommended-reading id=91066]
We were there because he had a few back-to-back routine appointments, and I was following one of my ALS-related anti-stress strategies: <a href="https://alsnewstoday.com/columns/my-go-along-strategy-living-well-als/">to be a go-along</a> whenever the opportunity arises.
I looked forward to my afternoon of sitting on my mobility scooter and waiting in the lobby of the big VA medical center. Besides my favorite pastime of people-watching, I enjoy seeing the various styles of rollators and mobility scooters that roll by. I also relish the quiet time to knit and come up with ideas for <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">my next column</a>.
But first, we had to park the van. Till then, we were stuck playing the parking lot waiting game.
<h3>What happened next</h3>
The game is much like going fishing. Pick your spot, put the line in the water, and wait.
We sat near one line of parked vehicles, and our van’s hazard lights blinked while we scanned for potential movement in our line of sight. A few people walked into our zone, jangling keys and digging through pockets. But they were just false alarms and crossed through to parking lots beyond ours.
Finally, just after my husband wanted to circle the lot, a couple came into view and headed straight to a vehicle parked ahead of us and slightly to the left. We then ever so patiently waited as the woman loaded her husband’s rollator into their SUV, helped him get seated, and seated herself in the driver’s seat. Ignition on, more waiting. Brake lights on. And lastly, the SUV backed up.
At that moment, a white car pulled up next to us and wedged itself between our van and the SUV that was now in full reverse and almost clear of the coveted parking space.
“Oh no,” I remember whispering as the white car boldly drove into the now-vacated space.
My husband jumped into action. Our van lurched forward, and he honked the horn as he rolled down his window to wave his arm in disgust. What followed was much ballyhooing, posturing, and arm waving. The white car’s driver rolled down his window and extended his arm. A passerby, who unbeknown to us had witnessed the whole scene, began waving his arms too and hollered at the driver of the errant white car.
Maybe because our accessible van was much larger than his vehicle, the uproar was intimidating, or he finally realized he&#8217;d broken the unwritten parking lot code of “wait your turn,” the white car slowly backed out and sped off. I stopped holding my breath.
Thankfully, the rest of our afternoon unfolded without further incident.
<h3>Reflection</h3>
On the drive home while recounting our parking lot altercation, we noted the changing social norms. Everyone seems to be in such a rush to get somewhere that they just think about themselves. Cutting in line is rude. If the white car’s driver had politely asked us if he could take that spot because of an emergency or that he was running late, we surely would have let him in.
Then my husband told me that at his first appointment, his initial blood pressure reading was unusually high and needed to be repeated before he left the office. When his doctor questioned, my husband jokingly told him, “I think I have parking lot syndrome.”
His doctor laughed and said, “I totally understand.”
We drove home chuckling. For me, it was another day of looking for the bright side while living with ALS.
<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.

Finding humor while waiting for a space in an accessible parking lot

A couple of weeks ago, I lined up a daytime <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregiver</a> for my husband, Todd, so I could take a day trip with our 14-year-old son to ski and snowboard. During the two-hour car ride, he introduced me to the &#8220;Bellied Up&#8221; podcast, a call-in advice show with comedians Charlie Berens and Myles, the You Betcha Guy. They invite callers to belly up to the bar and share their situation, and then the guys dispense advice with thick Midwestern accents. It’s mostly silly banter, and I’ve since listened to a few older episodes looking for a laugh.
<a href="https://podcasts.apple.com/us/podcast/maple-syrup-and-death-75/id1625967187?i=1000635005059" rel="nofollow">In one episode</a>, a man called in for advice because his girlfriend was annoyed that he was working too much during maple syrup season. “I&#8217;m a funeral director by day, and then maple syrup producer by night, pretty much.”
“Oh, you&#8217;re a funeral director,” Charlie said.
“Let&#8217;s hold on with that,” Myles interrupted. “We&#8217;re going to dive into that in a little bit here.”
I smiled, anticipating the humor that was sure to come.
[recommended-reading id=89720]
<h3>Questions for the living</h3>
Death is frequently on my mind because Todd has had <a href="https://alsnewstoday.com/what-is-als/">ALS</a> for more than 13 years. <a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> is no joke, but both Todd and I have found comfort <a href="https://alsnewstoday.com/columns/weve-developed-dark-sense-humor-living-with-als/">when humor and grief collide</a>. We often laugh at the absurdity of the hardest parts of life.
After fleshing out the maple syrup situation, Myles asked the funeral director a question for the living: “When is too early to start looking at a plot in a cemetery? Do you have any advice on that? Should we be looking now to find some prime real estate, or can I wait a little later?”
“There’re two things that you’ll never escape,” he replied. “Death and taxes. So my piece of advice is, if you’re thinking about being buried in a cemetery, buy your plot now. That way it’s cheaper in the long run because you can prepay everything, all set ready to go right now, not pay a single penny more when your time comes, and it’s gonna be a lot cheaper now than it will be in the future.”
I’ve considered various burial sites in our area, such as a beautiful cemetery where green burial is an option. But in the green burial section, there are no headstones. While I’m drawn to the idea of my body becoming earth and providing nutrients for plants to grow, I’d also like to have a specific spot marked for my kids to visit, more than just a path that diverges into the woods to a pretty glade.
<a href="https://alsnewstoday.com/columns/honoring-family-memorial-day-visit-cemetery/">Every Memorial Day</a>, the kids and I visit Lakeside Cemetery in Hancock, Michigan, where my dad is buried, as well as his parents, both sets of his grandparents, one of his sisters, and his aunt and uncle, who were like surrogate grandparents to me. That&#8217;s where I want Todd and me to be buried, but I hadn’t considered buying a plot now.
While it’s unlikely Todd will survive for many more years with ALS, I’m only in my mid-40s. But if plots aren’t getting any cheaper, perhaps Todd and I should buy a plot for both of us now and nail things down.
I posed the question to Todd: “Should we be buried in the old section of the cemetery where my great-grandparents and my aunt are buried? There are trees there, and it&#8217;d be nice to have shade when I visit. Or should we be buried near my dad on the other side of the cemetery?”
“Will your mom be buried next to him?”
“Yes.” Her name is already on the headstone.
“That’s where we should be, too,” Todd said. “But if you get remarried, you could end up being married to him for longer than you were married to me. You could be living in Florida, and would you really want to have your body brought all the way back here?”
“I could be cremated,” I said, “and if I remarry, I wouldn’t have kids with him. I’d want to be buried where our kids would visit both of us.”
“What do you think of buttercups and daisies on the headstone?” I asked because I like wildflowers.
“I love buttercups,” Todd said, “because that’s you.” Buttercup has long been his term of affection for me. “But I want a cross.”
We&#8217;re going to design a cross with buttercups.
“Should we get the headstone made now and store it?” I asked. “We could put it in the garage — or in our living room.”
“I think if we buy a plot, we can put it at the cemetery and add the dates of death later.”
“And then we can visit our plot together,” I enthused.
“That would be romantic,” Todd said.
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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.

Humor and grief collide as my husband and I discuss burial plans

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>.
[recommended-reading id=77415]
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.
<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, 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

<a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> can be an emotional roller coaster. However, I’ve found that when I round the bend and find humor in a situation, I’m sure to have a smooth ride ahead. Let me share my latest experience with you.
Before <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, my life was filled with moving. I grew up doing gymnastics and enjoyed a happy livelihood teaching classes in wellness, fitness, and dance. But as a person <a href="https://alsnewstoday.com/als-diagnosis/">newly diagnosed with ALS</a>, my mind swirled with images and thoughts about how patients eventually become paralyzed. The prospect of being unable to move made me angry at ALS and my body, and jealous of others who would be able to move when I couldn’t anymore.
These thoughts dominated my thinking and even caused me to avoid watching TV shows that portrayed any type of physical movement. Some of those shows used to be my favorites. But if I watched the dance competitions, gymnastics championships, and Olympics like I used to do, I&#8217;d be left sitting in a puddle of tears.
However, experts say that <a href="https://alsnewstoday.com/als-and-exercise/">exercise is beneficial for people with ALS</a>, so I thought, “What’s the worst that could happen? If nothing improves, I’ll just be right back where I started. I can at least try.”
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<h3>What I did</h3>
Sifting through my old fitness notebooks, I attempted modified versions of each routine. But even the simplest yoga poses and Pilates moves had become too complicated for my body to perform correctly. My <a href="https://alsnewstoday.com/symptoms-of-als/">sense of balance, spatial awareness, and body control</a> were out of whack. Even though my mind clearly remembered how to do a particular movement, my body regarded it as an alien command.
So I thought further back, to my early days in dance and how new and complicated step patterns always made me feel, as if I had two left feet. But with enough practice and time, I found success. The secret was to break down the step patterns into smaller bits, practice in slow motion, and relate everything back to fundamentals. These were easy fundamentals, like doing just a step-step, rock-rock.
I decided to practice only basic movements — very basic movements — such as rolling and stretching on the floor, slow walking forward and backward with my rollator, and even sitting for &#8220;chair dancing&#8221; while listening to music. While I’ve now added many more <a href="https://alsnewstoday.com/columns/movement-exercise-daily/">movements and exercises to my day</a>, these basic movements continue to be the core of my daily routine.
<h3>Aha!</h3>
To my surprise, my daily warmup movements were the same type that dancers and gymnasts do. That aha! moment clicked my brain into wanting to watch all those favorite TV programs again. I’d see the performers prepare and look for new movement ideas.
In fact, a recent televised gymnastics championship prompted a discovery. “I’ve invented a brand-new event: walker beam bars!&#8221; I exclaimed. When I walk with my rollator, I imagine I’m pushing a small set of parallel bars and my path is a 2-foot-wide balance beam. Eyes up, posture straight, elegance and balance. My score? A perfect 10. Take that, <a href="https://simonebiles.com/" rel="nofollow">Simone Biles</a>!
If you’re stuck with negative thinking, try to change your mindset. You just might transform your physical limitations into opportunities! It’s an important strategy for <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">living well 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, 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 I got unstuck from negative thinking due to ALS

When I took my son to the doctor for his sports physical, the nurse went through a checklist of health history questions. The exchange took an unexpected turn when she asked about my husband’s health.
“Is Dad healthy?”
“No. He has <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.”
The nurse glanced at her computer screen. “I saw that in the file. Other than that?”
Caught off guard by her question, I held back a laugh. “Well, it’s such a debilitating disease. He’s very unhealthy.”
The nurse continued, “Has Dad had any health changes since last year?”
“Yes. ALS is progressive.”
[recommended-reading id=77415]
As I later recounted the conversation to my husband, Todd, we laughed at the absurdity of her questions.
“Why do I find it funny?” I asked.
He pointed out that the phrase “other than that” has a minimizing effect. “If I said, ‘I totaled my car,’ no one would ask, &#8216;other than that, how is it?&#8217;”
ALS is so bad that nearly every other ailment pales in comparison, even to the extent that Todd’s primary care physicians haven’t screened for them.
In retrospect, the nurse was likely trying to assess unrelated genetic predispositions to things such as <a href="https://www.mayoclinic.org/diseases-conditions/type-2-diabetes/symptoms-causes/syc-20351193">type 2 diabetes</a> or heart disease, and so her questions make sense, but they still made me laugh.
There are as many theories about what makes something funny as there are comedians who tell jokes and audience members who hear them. But most people might agree that there&#8217;s humor in the unexpected or incongruous, and otherwise normal or perhaps slightly odd behavior becomes funny when it occurs in a serious setting.
My family has been working our way through &#8220;<a href="https://www.imdb.com/title/tt22074164/" rel="nofollow">Jury Duty</a>,&#8221; a series that&#8217;s billed as a cross between &#8220;<a href="https://www.imdb.com/title/tt0120382/" rel="nofollow">The Truman Show</a>&#8221; and &#8220;<a href="https://www.imdb.com/title/tt0386676/?ref_=fn_al_tt_1" rel="nofollow">The Office</a>.&#8221; The show&#8217;s premise is that a man is asked to be part of a documentary about serving on a jury, but unbeknownst to him, everybody else is an actor and the case is fake. Crazy things happen, and what makes the show funny is that we witness it through the eyes of someone who&#8217;s expecting solemn official proceedings and doesn’t know everything is staged.
Living under the cloud of terminal illness provides ample opportunity for the unexpected. Serious subjects become fodder for banter in our household.
The kids and I surveyed the cemetery after a recent <a href="https://alsnewstoday.com/columns/honoring-family-memorial-day-visit-cemetery/">Memorial Day</a> service, and we discussed if their dad and I should be buried in one of two sections: an old one near my aunt and great-grandparents, with mature trees and shade, or in a newer section on the other side, near my grandparents and dad.
As we debated the merits of cremation, green burial, and traditional burial, we laughed at the absurdity of the conversation. It feels so strange and different from the average family at our life stage.
When friends came over for dinner recently, Todd mentioned his idea to build a glass vestibule inside one of the entrances at the church where our friend works. “When I&#8217;m gone, you can call it the Todd Neva Memorial Vestibule,” he said. And then we discussed who&#8217;d preach at his funeral. We laughed, because these are not normal conversations.
Another friend and I went for a walk, and she reflected on our laugh-filled conversations with Todd and her husband. “You talk about death so casually,” she said.
“Well, we’ve been living with this for <a href="https://alsnewstoday.com/columns/trying-see-beauty-after-13-years-with-diagnosis-als/">13 years</a>.”
If we didn’t laugh, we’d just cry. It feels surreal to live our lives on <a href="https://alsnewstoday.com/columns/burden-knowing-future-farewell-lulu-wang/">the edge of death</a>, and laughing at the absurdity of it has become a way to cope.
<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: humor

Finding humor while waiting for a space in an accessible parking lot

Humor and grief collide as my husband and I discuss burial plans

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

How I got unstuck from negative thinking due to ALS

We’ve developed a dark sense of humor living with ALS