Monthly Archives: September 2016

Laugh with Ads That “Get” Disabilities

[This post first appeared as one of my columns on www.multiplesclerosisnewstoday.com]

You don’t see people with disabilities very often in TV ads.  And when you do, the person with the handicap is usually playing a secondary role, or the ad uses the disabled person for an emotional appeal.  It’s not real-life.  It’s not us.

So, a tip of my hat to the candy company Mars Chocolate UK for producing some ads for its Maltesers candy that “get” us gimps.  (And thanks to blogger Maayan Ziv for highlighting them in her blog on http://www.accessnow.me. The ads had me laughing out loud while making the point that a disability doesn’t, necessarily, disable a sense of humor.   WARNING: The first of these videos is a little, shall we say, “suggestive.” Also, if you’re not a speaker of the Queen’s English you may have to watch and listen twice to capture it all.  Here ya go.  Enjoy:

Mars Chocolate UK teamed with the non-profit group “Scope: About Disability” to produce those two ads. A Scope slogan is: “End the Awkward,” and one of the ways they’re working to do that is through videos.

Here’s the story of how the Maltesers ads came about:

Says Michele Oliver, the VP of Marketing for Mars Chocolate UK,  “As one of the UK’s biggest advertisers, we have a responsibility and a role to play in reflecting diversity in everyday media. This is a first step for us, and with a fifth of the UK population living with a disability, and the nation focused on this great sporting event (the Paralympics), this is the right time to join the conversation.”

Wouldn’t it be nice to see ads like these, including people with disabilities and produced by people who “get” it, running outside of the UK?  Wouldn’t it be nice for more companies to do what Mars Chocolate UK has done to help “end the awkward?”

 

 

 

 

MS Marathoner: 1 Continent Down, 6 to Go

(This is an update of my column posted last week on www.multiplesclerosisnewstoday.com)

Tripping, falling and bloody knees.

Been there. Done that. (Who with MS hasn’t)?  But this wasn’t me.  This was Cheryl Hile and it was happening to her as she was running a half marathon in Carlsbad, California.

Cheryl had been running marathons for half a dozen years when, in 2006, she was diagnosed with Multiple Sclerosis.  She says the diagnosis left her “devastated and very scared.”  She was also depressed.   Cheryl dealt with that depression by continuing to run.  But then, after that stumble in Carlsbad, Cheryl’s neurologist told her that it happened because she had foot drop…when her right foot should have been raising it was dragging.  And then the doctor tacked on a suggestion: lower your expectations, shafose warned.

“That p***ed me off,” Cheryl told www.sdnews.com.  But rather than lower her expectations, Cheryl raised them.  Cheryl worked with an orthotist who fit her with a light, durable carbon fiber brace, called an Ankle-Foot Orthotic (AFO), that held her dropped foot at an angle that would allow her to run.

Since then Cheryl has completed 30 half marathons, 31 full marathons and one 30 mile race with an AFO on her leg.

7 in 7 in 12

And is she’s doing more.  Cheryl has made it a goal to become the first person with MS to run icheryl-cape-town-2n seven marathons…on seven continents!  And, she plans to do all seven in just 12 months. Take that, “Doctor No”!!

Cheryl completed first of these seven marathons in Cape Town, South Africa  last Sunday, with a time of 4 hours, 51 minutes and 51 seconds.  Next comes Buenos Aires in October, Honolulu in December, Antarctica in January, Tokyo in February, Vienna in April and she plans to finish in Christchurch, New Zealand in June 2017.

 

Running Slower and Looking a Bit Strange

In addition to foot drop, Cheryl had four exacerbations in one year that left the right side of her body much weaker. At one point she could only lift her right leg an inch off the

cheryl

ground. She recovered a bit and can now lift it about 4-5 inches. She says her foot drop coupled with a weak thigh makes her a much slower runner. Cheryl pushes off with the left side of her body and, she says, the right side of her body is basically “along for the ride. I have a funny gait and my right leg swings out, so watch out if you are running next to me!”

It’s More Than a Marathon for Cheryl

“The primary reason I am doing this journey is to give back to the MS Society,” Cheryl wrote me in an email.  “They educated me about the disease and encouraged me to keep moving when I was first diagnosed and depressed. I want to be a role model for newly diagnosed to encourage them to do what they can and to never give up!”

So, on hercheryl-cape-town-1 CrowdRise web page, where she’s raising funds to cover this expensive journey, there’s a link for direct donations to the National MS Society.  Cheryl says that once she’s reached her travel-expense goal she hopes to raise at least another $10,000 for the Society.

It’s not an inexpensive journey.  Cheryl hopes to raise close to $60,000.  Her biggest expense will be the marathon in Antarctica – nearly $8,000 per person.  “I really do hope I make this fund raising goal,” Cheryl told me. “I am a frugal traveler and I am taking measures to cut costs.” When Cheryl and her husband landed in Cape Town at 9:45PM, for example, instead of going straight to a hotel for that first night, they saved money by staying at a cheapo motel across from the airport.  “As long as I have a teapot or kettle in my hotel room,” she says, “I know I can have oatmeal for breakfast and gnocchi for dinner!”

We’ll keep track of Cheryl Hile on The MS Wire and wish her the best as she consistently pushes toward the finish line.

Ladder 3

A 9/11 Re-visit

Today, on the 15th anniversary of the World Trade Center and Pentagon attacks, I’m re-posting a story that I posted a few months ago. It’s about a trip that I made to visit the 9/11 Memorial and Museum in New York City last Spring…a trip that will resonate with anyone who makes it.  And I encourage everyone to make it.

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I grew up in Lower Manhattan.

Though I’ve lived in Maryland since 1973, once a New Yorker…always a New Yorker. So, I’ve always felt the closeness of a New Yorker to the events of September 11, 2001. Earlier this month I finally had the opportunity to visit the 9/11 Memorial and Museum to pay my respects to those who died there and also to see the magnificent 1 World Trade Center, which soars above the memorial, just to its North.

9-11 museum wall edit

The museum and the memorial are fully accessible. But you may have to detour around a bit to avoid some steps at the memorial and to skirt some construction that blocks some nearby sidewalks.

The 9/11 Museum

The museum (the yellow square on the map) is on the Greenwich Street side of the plaza, between the North and South memorials. Trying to ride my scooter along Greenwich Street, on one side of the plaza, and West Street, on the other, required zig-zagging from one side of the street to the other to dodge construction blocking the sidewalk, but it wasn’t a big deal.

9-11 memorial map

At the museum you need a ticket. You can buy one at the museum ($24 a person with discounts for seniors, students, teens and the military), but if you go that route you can pretty much plan on waiting in line at the ticket booth. It’s much easier and faster to buy a 9-11 museum steelticket on the museum’s web site. Since the tickets are issued for specific entry-times, buying on-line also avoids a possible wait between purchase time and entry time. When I visited there was also a line of ticket-holders waiting to actually enter. However, when a museum volunteer spotted my scooter I was ushered right in via the entrance that’s reserved for staff, museum contributors and relatives of 9/11 victims.

9-11 museum steelInside everything is accessible, either via ramp or elevator, and there are plenty of volunteers stationed all over if help is needed. If you’re not using a scooter or a chair be warned, there’s lots of walking. But wheelchairs and walkers are available at the information desk at no charge, first-come first-served. You might want to take advantage of that. There are accessible rest rooms on several levels of the museum.

Guided tours are available, at an extra charge. I was on my scooter but, since my wife is a slow walker, rather than feel rushed by the pace of a group we decided to download the museum’s app to our iPhones. It contains an audio tour which allowed us to go at our own pace.

The 9/11 Memorial Plaza

Twin memorial pools fill the spots where the north and south towers stood. 9-11 memorialThe names of every person who died in the terrorist attacks of February 26, 1993 and Septembe9-11 memorialr 11, 2001 are inscribed in bronze around each pool.

There are several entrances to the memorial plaza. All are shown on the map in this post and there are signs that direct you to each.

Tours of the memorial are available, for a charge, by a memorial staff member or by a 9/11 Tribute Center volunteer, each of whom has a direct connection to the events of that day.

There are NO public restrooms at or near the memorial plaza. There are accessible restrooms inside the 9/11 Museum, but you need a ticket to enter.

1 World Trade Center

1 World Trade Center soars above the 9/11 Memorial Plaza. It’s the tallest building in the Western Hemisphere and the observation center is on the 102nd floor. A ticket is required 1 WTC1 WTCto go up to the observation level, even if you just want to eat at one of the restaurants up there. Like the museum, it’s best to buy this on-line before you arrive. The entrance for the observation platform is on the West Street side of the building.

There are accessible restrooms at several locations in 1 World Trade Center but you can’t get to them without an observation center ticket.

If for more information about accessibility you can contact the Guest Services office at 844-OWO-1776.

Brookfield Place

If you’re in the mood to shop, the very-upscale Brookfield Place is directly across West Street from the 9/11 Memorial. But let me warn you, it’s hard to find an entrance door with an automatic opener. I finally found one far to the right of the main (West Street) entrance. To go from inside the mall to the area, outside, along the Hudson River I could , again, find only one door. Again, it’s not easy to spot and there are no signs indicating its location…near P.J. Clarke’s restaurant.

For a nearly-new building, the lack of automatic doors that are easy to locate is inexcusable, Pelli Clarke Pelli architects. Just sayin’.

NYC Travel

For some information about getting around via public transit in NYC check the NYC Travel page on this web site.

 

 

 

Can you measure how tired I am?

[This post first appeared last month in my column on www.multiplesclerosisnewstoday.com]

Feeling tired? No surprise there. Fatigue is as much a part of living with Multiple Sclerosis as sand is a part of the beach where I live.

It’s interesting, then, that neurologists seem to have no good system for measuring levels of MS fatigue or any treatments that are really effective over the long term.

Physiologists at Colorado State University are raising those issues in a paper titled “Fatigue in Multiple Sclerosis: Misconceptions and Future Research Directions,” published in the Aug. 2 issue of Frontiers in Neurology. In it, they assert that “fatigue remains poorly understood and [because of that people with MS] continue to suffer from a lack of effective fatigue treatments.”

The paper points to research by B.M. Kluger and others, and puts it this way: “Current treatments are nonspecifically targeted to a vaguely defined symptom with unsatisfactory outcomes.” In addition, says Kugler, MS studies often fail to understand the difference between fatigue, depression and lack of sleep. I translate those statements to say: They’re shooting in the dark.

Defining MS fatigue

The Colorado State physiologists hope to find a way to shine a light on that target. They begin by offering this definition of fatigue: “The decrease in physical and/or mental performance that results from changes in central, psychological, and/or peripheral factors.” They define “central” factors as things related to the central nervous system. “Psychological” factors include mood disorders, motivation, performance feedback, and arousal. “Peripheral” factors are physical changes.

All of these depend upon what the authors call “conditional dependencies”: what the person with MS is doing, the conditions (e.g., heat and cold) where the person is, and the physical and mental condition of that person. These all interact with each other, as well as with the “factors” listed in my previous paragraph.

Assessing MS fatigue

Since MS fatigue isn’t a one-size-fits-all problem, the physiologists suggest that doctors measure it using multiple tests. These include electromyography, metabolic measurements, transcranial magnetic stimulation, magnetic resonance imaging (MRI), and near infrared spectroscopy.

Then, overlay the test results against the standard definition of fatigue that the Colorado State physiologists have proposed. “By using a uniformed understanding and measurement of fatigue,” they write, “progress may finally be made in effectively treating the symptoms of fatigue and improving quality of life” for MS patients.

A patient’s view

Sounds pretty logical to me.

There’s no doubt that my fatigue is affected by a number of factors, just as the Colorado physiologists suggest: heat, lack of sleep, stress, occasional depression. If I told a doctor I felt warm I’d expect to have my temperature taken … or my blood pressure measured if I was stressed. But no one has ever measured my fatigue.

How, and how much, does my fatigue change from day to day, and how can it best be treated? A drug like Provigil can be prescribed to improve my alertness if my fatigue is due to lack of sleep, but what if it’s due to stress or depression … or a combination of them?

I think the Colorado State researchers have the right idea. Now, I’d like to hear the thoughts about this approach to handling MS fatigue from the neurologists and other medical professionals who may be reading this.