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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.
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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.
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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.

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

Since the point where my husband, Todd, needed a wheelchair because of his <a href="https://alsnewstoday.com/what-is-als/">ALS</a> progression, he&#8217;s had to navigate a less than perfectly accessible world.
Todd is particularly challenged in our old community, which was built up long before the passage of the <a href="https://www.ada.gov/topics/intro-to-ada/">Americans with Disabilities Act</a> in 1990, with its accessibility requirements for public businesses. <a href="https://www.ada.gov/resources/title-iii-primer/">Accessible design elements</a> have since been incorporated into the construction of buildings, but many of our businesses operate out of early 20th century buildings, which have been grandfathered into a perpetual state of inaccessibility, with steps to get inside or inadequate seating.
Todd is <a href="https://alsnewstoday.com/columns/challenge-finding-fun-family-activities-als-progresses/">homebound now</a>, but when he could get out, his activities were limited to the buildings he could access. He could attend school events for our <a href="https://alsnewstoday.com/columns/parenting-children-rare-diseases-family-support/">kids</a> because the schools were built after the ADA passed. But when our daughter once had a violin recital in the old two-story building where I&#8217;d attended elementary school, he could only listen from the front foyer because the structure was never retrofitted with an elevator.
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Another time, our daughter was in play at a historic theater that had opened in 1900. The old auditorium&#8217;s aisles are too narrow and steep for a power wheelchair, but at some point a few seats in the back row were removed and a platform added. Todd had parked his chair there while I sat on a folding chair next to him. But when we returned for the play, a sound booth was in that spot, leaving Todd to park against the back wall. Fortunately, he has an elevate function on his wheelchair, so he could rise enough to see above the heads in front of us. I stood next to him.
We were delighted when there was a performance at a modern theater on our local university’s campus. There’s plenty of room for wheelchairs, with companion seats next to them.
<h3>Other kinds of challenges</h3>
Our local university also has accessible rink-side seating in its hockey arena, but when we started attending games, it was general admission. For one game, I purchased a wheelchair ticket for Todd and three companion seats for me and the kids. That hockey game was well attended because we were playing our rivals from a neighboring university, and other people in wheelchairs had filled all but one spot — and that was blocked by a videographer for a local television station. The man ignored our request to move his tripod down 3 feet, so I talked to someone in the box office. A manager arrived and persuaded the videographer to move over. The manager was apologetic and gave us free popcorn. The next time we attended a game, numbers had been added to the companion seats and open wheelchair spots so we could reserve the specific spaces.
It felt good to have a win.
Todd also had an accessibility win when he got a national chain restaurant to add a ramp between its parking lot and sidewalk. For years, Todd went out with his buddies every Thursday night, but it was difficult to get into the building because the asphalt parking area was a few inches below the sidewalk&#8217;s elevation. He couldn&#8217;t smoothly transition between the surfaces and would be jostled. But the real problem was leaving, when his chair would tip forward driving off the sidewalk. Todd had to back off of it for his safety.
He complained to the manager a few times over a couple years, and the manager assured him that he&#8217;d escalated the complaint, but no action was taken until Todd found a form on the corporate website and described the problem. They must have contacted the franchise owner, because a month later the problem was fixed.
<figure id="attachment_89829" aria-describedby="caption-attachment-89829" style="width: 671px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-89829" src="https://alsnewstoday.com/wp-content/uploads/2024/02/Joyful-Sorrow-Sidewalk-Fix.jpg" alt="Two pictures are divided by a diagonal line. On the left, under the word &quot;Before&quot; in red type, we see what appears to be concrete in the foreground, with a gap of a few inches before it resumes. on the right, under the word &quot;After&quot; in red type, we see dark gray rectangular stones butting up to dirty white or light tan stones, all on the same plane." width="671" height="322" data-wp-pid="89829" /><figcaption id="caption-attachment-89829" class="wp-caption-text">Before and after the sidewalk was fixed. (Graphic by Todd Neva; photos courtesy of Kristin Neva)</figcaption></figure>
It was an incremental improvement in a world that’s been progressively difficult for Todd to access.
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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.

We celebrate small wins for wheelchair accessibility with ALS

One of our greatest sources of joy and normalcy when my late husband, Jeff, was <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a> was getting out and about in the community. The more <a href="https://alsnewstoday.com/what-is-als/">ALS</a> seemed intent on changing our life, the more determined Jeff became to find ways around it. I was his accomplice in our adventures, making sure they were safe, comfortable, and enriching.
One important way that we stayed connected with life was going out to dinner — whether to nice places or dive bars, we didn’t care. We just enjoyed being out, and we relied on his <a href="https://www.youralsguide.com/als-power-wheelchair-guide.html">wheelchair</a> and <a href="https://www.youralsguide.com/transportation.html">mobility van</a> to make it possible.
Before we began using Jeff’s <a href="https://www.als.org/navigating-als/resources/fyi-information-about-feeding-tubes">PEG tube</a> for his meals, we frequented a set of favorite restaurants in and around our home in Annapolis. Annapolis is one of many places in Maryland renowned for excellent seafood, and we were both fans of local rockfish, blue crabs, and other delicacies. Eating well, while Jeff still could, was a familiar comfort during an otherwise scary and unfamiliar time.
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I remember one such evening, heading out to Jeff’s favorite local restaurant, a large, airy, nautical place accented with varnished wood and filled with sailing memorabilia and vintage photographs. We loved the menu at any time of day and enjoyed taking family and friends there when they visited us. The service was reliably good, and Jeff found that there was plenty of room to maneuver his wheelchair, which was always a consideration.
The restaurant had a small parking lot, though, and we discovered that routinely, the two designated handicapped parking spots were occupied by cars not bearing handicapped tags or hanging placards. The first time this happened, we found alternate parking blocks away, which was complicated as Jeff’s 425-pound wheelchair was challenging to drive on older, brick streets. The second time, and the third, we regrettably changed our restaurant choice after finding the spots occupied. After that, we just stopped going altogether.
This made me sad, and it also made me reflect: If people knew that using a handicapped parking space without need, simply for convenience’s sake, would keep someone who needed it from enjoying a dinner out or a visit to the mall, or from using an airport check-in counter, would they still use it?
Before ALS impacted our family, I’d been a passenger in cars plenty of times when the driver pulled into a handicapped parking spot, reasoning that it was just for a quick errand or that we’d “only be a minute.” I never objected; it felt petty to do so. Parking there seemed like a relatively small thing, and it was hard to argue when the stop at hand was for a short period of time.
Now I know different.
Going on an excursion while using a wheelchair was, in our case, a significant undertaking, one for which we could easily spend more than an hour preparing. It was vitally important for Jeff to get out and enjoy life while he was living with ALS, and we did a good job of making that happen. But it was crushing when we’d counted on access and found it unavailable. It happened more times than I care to count, and while we could usually redirect and change our plans, I know that for Jeff, doing so further drove home the reality of his disease and resulting disability. It was yet another minor loss in a sea of many, both large and small.
It&#8217;s important for me to note here that there are hidden or &#8220;invisible&#8221; disabilities, and many people legitimately availing themselves of handicapped parking and access who do not “appear” to need it. That, I know, is none of my business — and I’m grateful that the access exists for all who require it. Usually those cars are indicated with placards or tags. I’m speaking instead of those of us who are able-bodied and avail ourselves of better access for convenience.
Saving handicapped access — be it parking spots, pre-boarding on airplanes, or shorter spots in lines — for our neighbors and community members who need it is important. It can genuinely have a major impact on someone’s day, marking the difference between whether they’re able to participate in a cherished activity or not.
Even today, more than three years after Jeff’s death, I find myself looking for curb cuts to check whether a street or a sidewalk is accessible. I notice ramps, elevators, and other features that make life doable for those living with disabilities, whether seen or unseen.
I remind myself often to hold those spaces for people who truly need them, and I won’t use it until such a time that I need it — not even for a moment.
<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: accessibility

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

We celebrate small wins for wheelchair accessibility with ALS

Why I’ll never use handicapped parking until I need it