Is It Age or MS?

Recently, Jeopardy uber-champion James Holzhauer surprised by donating to a nonprofit battling the type of cancer that affects show host Alex Trebek.

Holzhauer, 34, was epic master of Jeopardy for weeks on end, winning $2,462,216, just shy of Ken Jennings’ record $2,520,700. He donated to a fundraiser in his boyhood hometown of Naperville, Illinois. Event participant Ann Zediker decided to email him. “My gut told me it was the right thing to do. It couldn’t hurt.” (There’s an example for the would-be activists out there.)

Holzhauer’s rein lasted 32 games before he was beaten by another Chicagoan, 27-year-old university librarian Emma Boettcher. (Holzhauer is actually a professional gambler from Vegas, but Naperville’s a Chicago burb = he’s ours.) Boettcher lasted four episodes. It’s tough out there.

The day I tried out for the show, about 70 bookish characters turned up. They didn’t get a lot of sun, these people. The people from the show gave us three or four Jeopardy-type quizzes, flashed across a couple of TV screens while we sat at long tables, scrawling down our answers. The nerves were there in that room. It’s a different ballgame actually committing answers to the page instead of thinking them in your head. We finished the timed tests, then went through the answers together, correcting ourselves. The entire room groaned and laughed, not a little awkwardly. Going through the answers aloud really was a fun idea for preparing a roomful of people for rejections.

A stage manager from the show told us a couple of anecdotes about Alex, which was the honey, and then told us the cut-off point for right and wrong answers: people with this many right can stay for the next round (and use the fake buzzers!), but all of the rest… Wa Wah Waaah. It was a pretty thin margin between making it and not. It didn’t take many mistakes. When they announced the number, there were a lot of forehead slaps and moans in the ‘You’ve got to be kidding me’ vein.

Let me tell you, in the lobby where we waited for the elevators, all the good-natured masks had dried up and blown away like dust. Here were the people who prided themselves as the smart kids in the room. They were ones used to getting all the answers right, the high SAT people. They were Those kids – but not today they weren’t. Now, they were the fallen of the Battle of Wounded Ego. Like all defeated peoples, there was seething, there was moaning, there were conspiracies. They were hissing back and forth about this answer not being fair, and that rule was so stupid. And I when I entered the room, forget it. By then I couldn’t handle a pencil, so to allow for accessibility I sat off to one side at the front of the room with the list of questions, while a guy wrote down my answers. (Can’t you hear them: “He probably doesn’t even need that wheelchair…ooh, here he comes now.”) The way they acted in the lobby, I figured there are seven a half-dozen daggers sticking out of my back. Oh well. I smirked as I rolled into the crowded elevator.

Although I continued to train (“train” means watching Jeopardy every day, with Pop-Tarts and stuff) I never did make another audition. I think that Trebek once recommended doing so before your mid-30s. Something about losing a step by then, either with your brain or your thumb (the clicker-finger). By now I’m well past my Jeopardy sell-by date. Neither of my clicker-fingers work anymore, and the ball of fat that sits on top of my shoulders? Well, it’s interesting you brought that up…

37 was the year. The first gray hairs in a red beard, at 37. The first deep lines across the forehead, at 37. And at 37 I noticed the first slowing in my thinking. Nothing serious, nothing to complain about. It were the ciphering. I was good with numbers, not genius or anything, but they were fun to me. I was good at up to three or four digits, multiplication, division, whatever. I liked doing it. Road trips I would pass figuring the minute and second we would reach the town ahead. That kind of thing was fun to me. But at 37, the digits started coming a little slower, just a tad, but I noticed. It was normal aging. Alex would say I’d hit my Jeopardy sell-by date. So, do the Jeopardy at 36 when you’ve got the most knowledge, because you’re about to turn into a pumpkinhead.

Now 17 years later, math is not so much. I still do it in my head, but I pull out the calculator for the important stuff like at tax time. My wife and friends stopped asking me for instant calculations years ago. What are you going to do? I wasn’t getting paid for it anyway.

The thing I’ve got going on lately is with conversation. I stick on words, like a gumball that doesn’t want to come out. Jumbled, awkward sentences tumble out of my mouth. I was always quick with the wisecracks. No more. In fact I’m kind of out of the snappy comebacks game altogether. For the fast party games I sit on the sidelines. I’m getting forgetful: ‘what were that lady’s instructions on the phone yesterday?’ or ‘I can’t believe I forgot to take care of (insert your own errand/bill/phonecall here).’ I mean just the simplest things that make me question where my head is at.

So then comes the question, is it age or MS? Although my MS is considered severe, I’ve been lucky to avoid cog fog, mental haziness, cognitive impairment. About half of those with MS develop cognitive systems.

When I do forget something and feel like a boob, there’s always this underlying question. And I’m not alone. According to others I talk to, it is a common concern among those with MS.

Last week I brought this up with my neurologist. I asked at the end of our time together, after we’d been talking for about a half hour. When I don’t come with a list of questions, with copies for everyone in the room, I have to shoehorn my questions in at the end. He patted my hand, mumbled something reassuring (’cause he’s a mumbler) and said see you in six months. On the way home my wife told me I did not make myself clear in what I wanted. I pay attention to it until my next appointment.

So now I’m coming for you, Trebek. If I can remember when tryouts are.

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$30 gift card for Hotel info survey

From United Spinal Association:

Indiana University is conducting a survey to evaluate whether accessibility information provided by hotels are meeting the needs of people with spinal cord injury (SCI).

Study results will help commercial lodging facilities provide better accessibility info to guests with SCI. A $30 gift card (Amazon or Visa) will be sent to survey participants (people w/ SCI or caregivers). Contact the research team at travelx@indiana.edu or call 812-855-9037 for a link to the survey.

“She was a force of nature”

That’s what Edward Kennedy, Jr., head of the American Association of People with Disabilities, said about the great activist Marca Bristo, who has died at 66. She was one of the architects of the Americans With Disabilities Act and also founded the huge and influential services agency Access Living in Chicago. She then went on to found the National Council on Independent Living and become policy advisor to presidents and congressmen, traveling the world as an advocate for accessibility.

I knew her only as a name. Then I read her obituary. What fire she had in her heart. What a great life she led. She’s definitely humbling and inspiring to read about.

Bristo broke her neck in an accident on the shoreline rocks of Lake Michigan on which I enjoyed so many carefree times when I was young. It happened when she was 23, which was the same age that rapid MS fell on me. But that’s where our similarities end. Bristo bounded right back out there, it seems. Fourteen years later she was working alongside the late Justin Dart (“the Martin Luther King Jr. of the disability rights movement,” she said) putting together the groundbreaking civil rights law of the ADA. Looking back over the years, I guess I had my moments, but in so many ways did poorly and regressed. I wasted a lot of time, spinning my wheels from frustration. I realize that we’re all different and it is foolish to compare. But that is why I use that radioactive word, inspiring, to describe her. I remember the late firebrand activist Dennis Schreiber, leader of the in-your-face Chicago group Disabled Americans Rally for Equality (DARE), telling me on one of our marathon phone sessions — Dennis was practically deaf and his speech very slow and affected — he said, “I hear you saying ‘can’t’ about yourself. Stop saying ‘can’t.'” At the time I felt like I was in a trick bag with little way out, and maybe most people would. But apparently Bristo didn’t have that trick bag, or any hardly bag at all. Again, looking back, maybe that bag was mostly in my head. You know it it’s like when you look back at your younger self and think, You’re doing just fine, little duck, don’t be so afraid.

Bristo’s New York Times obituary ends with this: ‘Ever the advocate, in the days before her death, Ms. Bristo received a phone call from Ms. Pelosi. According to her husband, the Speaker wished her well and said “I wish there was something I could do,” to which Ms. Bristo quickly replied: “You can. Move the Disability Integration Act to committee and to a floor vote.”’

If she inspires you like she does me, go over to the Disability Integration Act website and learn about this bill that aims to keep people in their homes (which is cheaper) and not stuck in nursing homes. As services get shortchanged, institutionalization is a very real prospect for many who are disabled. At the website you’ll see that the DIA has been reintroduced in Congress. The ball is in play. Find out where your reps are on this issue and put on your inner Bristo.

Accessible travel and camping links

Posted by a friend at MS Connection:

For those of you interested in accessible travel, I have found many great resources on Instagram and Facebook. There are hashtags specifically used for that purpose on Instagram. A couple that come to mind are #accessiblecamping #accessibletravel #accessiblefamilytravel and many variations of these names. There are also folks who maintain their own pages and if you just search by names like “accessible” and “travel”, you’ll find many different pages. The same thing on Facebook. I look at Accessible Family Travel and Accessible Travel Online but there are tons out there.

There’s a campground called Wilderness on Wheels in Colorado which has an Insta and Facebook page. I also read lately that Winnebago had recently come out with three accessible RV models. (Don’t think I want to see the price tag on those but the pics looked beautiful!). Safe travels everyone!!

Arches National Park by wheelchair

The Arches National Park we covered completely from inside the vehicle. The day was a mid-90s scorcher and we arrived late and short on time. Having only an hour or two, the ranger at the entrance recommended an hour-long scenic drive that covered about half of the park. We extended that by adding in a few scenic loops, and ended up seeing two-thirds of the park in an hour and a half.

Absolutely stunning formations of desert stone. There are outlooks and turn-ins throughout, so you can see as much or as little as you like. There are many trails and walkouts to the various arches and windows, much of which is wheelchair-accessible and clearly labeled on the maps that are given you. It was a bummer not being able to take more time, but on the other hand by going late in the afternoon like we did, we avoided the crowds. The park service recommends arriving in early morning or late afternoon for just this reason. In fact, they’ve installed a webcam at the entrance so that you can avoid long lines.

The neighboring resort town of Moab is packed with eateries and nightspots.

So, it’s three days in the new RV and we’ve hit two national parks. At this rate we’ll see em all by the end of the year! I kid, but watch out, Utah, we’re coming back for you.>

Visiting Grand Canyon South Rim in a wheelchair

The Grand Canyon was excellent for me in my chair. I haven’t been back since I was a kid, when my circumstances were far different. As you’d expect, the Park Service does a great job making it accessible.

The camping ground (Trailer Village) is clean and convenient. We picked a great place for our first night in an RV. They keep the spaces neat with pea gravel, that was a little too deep in one spot where I got stuck, but a young Frenchman walking by lifted me out of that bind. That’s a national parks kind of thing to happen, I guess.

Of course all the facilities and exhibits are accessible, but for me the big improvement is the emphasis on trams. Trams might have been around during my last visit too but that time my father drove us around the canyon himself. The trams are popular and well-run, shuttling thousands daily to the major outlooks along the rims of the canyon. The drivers are friendly and helpful answering questions and offering tips. At tram stops, wheelchair users and their families are directed to the head of the line so that they can be they can be secured in the tram before the peds file in. Wheelchairs must be 48 inches or less in length. The last thing we did was ride one of the four South Rim routes (red) and enjoy the sights sitting in AC. The round-trip took over an hour and we saw a lot of beautiful views from our seats. Disabled visitors can also get a pass to drive their own vehicles along the red route.

The signs throughout the park clearly labeled the accessible sites.

Highlight was going the 0.6 mile paved trail from Mather Point to the Yavapai Point and Geology Museum. The trail’s pretty wide and in decent enough shape. The edges are unfinished and often broken up, but folks gave us a pretty wide clearance. Excellent views.

Remember to get your America the Beautiful Access Pass for $10 gets you entrance to any and all national parks forever. ( Here’s the lifetime senior pass for $90.)

The scenery? It was OK:

Accessible Grand Canyon – National Park Service

Frommers’ Detailed Tips for Travelers with Disabilities

Trip Advisor – detailed Wheelchair Accessibility on the South Rim, written by the girlfriend of a wc user

USA Today – How to Plan a Grand Canyon Vacation for the Handicapped, with good tips

I love when a plan comes together

(Hat tip to the Mabster – this was the catchphrase of ol’ George Peppard from the A-Team. You know the A-Team, people: Mr. T!) Anyway, we rolled back into town, and what went down last week was the plan.

This was in the works since last year when we bought our powerful, outsized 2017 Nissan NV 3500 cargo van, Moby Dick. Last week Moby Dick met its destiny: we drove it cross-country to pick up the RV it was always meant to tow.

Like Moby Dick, we found the RV on the Internet. It is a small 16-foot toy-hauler (the back wall drops to become a ramp for my wheelchair), designed by Dunesport of Mesa, Arizona, which manufactures accessible RVs. Used Dunesports rarely come on the market, and like Moby Dick, this one was practically new, a 2019 that was traded in. The catch was that the RV was on the other side of the country, near Mesa, in Surprise, Arizona. That’s a long way from Chicago. (Moby Dick we found in Pasco, WA, crazy Internet.) But here’s the thing: the first sight we planned to see when we got an RV was the Grand Canyon, because Mabster had never seen it before – and lo and behold, this RV sat only a few hours from the Grand Canyon. So yeah, Surprise!

And they’re off!

Now 3900 miles and 10 states later, we roll back into town, exhilarated. We saw GC and the Arches National Park, crossed the Rockies (Mab and Moby Dick handling the mountains like champs) and stayed with comfort at six RV parks. Not all went perfectly – along the way we got stranded in West Texas in 100° weather – but once in the RV, it was so relaxing not having to micro-plan and negotiate and shoehorn ourselves into hotel rooms with our Hoyer lift, etc. Instead of frustration, headaches, and feeling like a pack animal, Mabster slept her soundest seven nights since I’ve known her.

More details later. Got another trip to plan.

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