Tag Archives: Handicapped Travel

Four Airport Tips for Disabled Flyers

Thanksgiving is just a few days away, so I thought it would be a good time to repeat a few of my airline travel tips and add a few new ones.

Get the wait-time app

Needless to say, you need to get to the airport early on busy travel days. TSA appHow early? In the United States, the Transportation Service Administration has an app, MyTSA, which will help you judge. It will tell you:

  • The approximate wait-times at security checkpoints.
  • How historically busy the airport will be on your specific day and time of travel.
  • The delays and current weather at airports nationwide.
  • Which items you can bring with you through the checkpoint.

Get some wheels

Airports, particularly those handling international flights, can be huge. Even if you can walk you really don’t want to walk from check-in to the plane.

I travel with a scooter that’s very light and also can be folded like a travelscoot_classicbaby stroller. I drive my TravelScoot right up to the aircraft door. Its battery is taken on board (FAA regulations require that it be stowed in the overhead) and the scooter is stowed with the baggage. When we arrive, the scooter is returned to the aircraft door and off I go. (There are several other light scooters that fold. You can find them on the internet.)

This works well with a lightweight scooter. If your scooter is larger and heavier, or if you’re in an electric wheelchair, you’ll need to check it at the gate before flying rather than at the plane door. The airline will use an onboard wheelchair, if it’s necessary, to move you from the gate to your seat.

If you’re not disabled enough to use a scooter, arrange for a wheelchair. The airline will provide this from check-in to the gate and in reverse when you arrive. (There is no charge, though tips are accepted.) Request the chair when you make your reservation either via the airline’s website or with an agent on the phone. If you’re buying your ticket through a travel agent or third-party website, it’s a good idea to phone the airline three days ahead of your flight to ensure they know you need a chair. This notification also should be done if you’re traveling with a scooter or an electric chair.

As an extra benefit, whether using my scooter or in a wheelchair, we’re usually moved through security using the (usually faster) TSA Pre-check line. (Once, changing planes at London Heathrow, my wife and I were taken to a completely empty screening area).

Pre-select your seat

Don’t wait until you get to the airport to select your seat. Most airlines allow you to choose your seat when you buy your ticket or when printing a boarding pass. Doing this may allow you to nab an aisle seat or one near a restroom.

Many airlines now have two classes of coach seats: regular and premium. Premium, of course, costs a little more, but the extra leg room is worth it to me, even though I’m only 5-foot-6 tall. Those few extra inches allow me to stretch my legs and even to stand. I also can squeeze past others in the row more easily if I wind up in a window seat. And things are a lot less uncomfortable if the passenger in front of me decides to put his or her seat back as far as it can go … right into my lap.

Premium coach seats are at the front of the coach section, which means there can also be a downside to sitting in one. These seats are sometimes located far from coach restrooms, which are only in the rear on some types of aircraft. I’ve found, however, that if I explain to a flight attendant when I first board the plane that I have difficulty walking in the aisle, they’re usually willing to allow me to use the higher-class restrooms up front on the other side of that blue “iron curtain.”

Medications

Your meds need to go in your carry-on when you’re flying. You really don’t want to be without them if your checked bags are lost.

I travel with about a half-dozen oral medications. I keep them in their original pharmacy containers and carry those in a see-through food freezer bag. Using that method, I’ve never had a problem with security, in any airport in any country.

In the United States, the TSA considers needles and syringes medically necessary items and you can carry them on after they’re screened, just like pills. The Transportation Security Agency has a lot of good information about traveling with medications and medical devices on its website.

From my family to yours, I hope you have a thankful Thanksgiving.

(Featured photo by Nick Fewings, under Creative Commons

(This first appeared as my column on Multiple Sclerosis News Today)

 

Advertisements

Three Tips for Smoother Flying With MS

It’s the time of year for travel here in the U.S. Graduations, weddings and vacations are on all of our calendars.

Air travel, in particular, can be a real pain for someone with a handicap such as multiple sclerosis. Security, aircraft seats and legroom are all becoming increasingly tighter. I’ve flown quite a bit for business and pleasure, and I’ve learned a few things that make my life a little easier at the airport and in flight. Here are a few of my tips for smoother flying with MS:

1. Get some wheels

Airports, particularly those handling international flights, can be huge. Even if you can walk you really don’t want to walk from check-in to the plane.

I travel with a scooter that’s very light and also can be folded like a baby stroller. I drive the scooter right up to the aircraft door. Its battery is taken on board (FAA regulations require that it be stowed in the overhead) and the scooter is stowed with baggage. When we arrive, the scooter is returned to the aircraft door and off I go. Note: This works well with a lightweight scooter. If your scooter is larger and heavier, or if you’re in an electric wheelchair, you’ll need to check it at the gate before flying rather than at the plane door. The airline will use an on-board wheelchair to move you from the gate to your seat, if necessary.

If you’re not traveling with a scooter arrange for a wheelchair, even if you may not think you need one. Trust me, you’ll be glad you did. The airline will provide this from check-in to the gate and in reverse when you arrive. (There is no charge, though tips are accepted.) Request the chair when you make your reservation either via the airline’s website or with an agent on the phone. If you’re buying your ticket through a travel agent or third-party website, it’s a good idea to phone the airline three days ahead of your flight to ensure they know you need a chair. This notification also should be done if you’re traveling with a scooter or an electric chair.

2. Join TSA Pre-Check

Pre-Check is the Transportation Security Administration’s program for speeding passengers through TSA security checks. Membership in the Pre-Check program requires you to fill out an online application and then appear for a 10-minute interview at a TSA location (usually at an airport), where you’ll be fingerprinted.

A five-year membership is $85. In exchange, you’ll be entitled to use the (usually) faster pre-check security line at the airport and won’t be required to remove your shoes, belt or light jacket. You also won’t need to take your laptop or liquids out of your carry-on bag. Though someone on a scooter or in a wheelchair is usually directed to the Pre-Check line even without Pre-Check membership, you’ll still need to go through the hassle of removing all of those items. To me, not having to do that is more than worth the cost and effort of signing up for this program.

For international travelers, an additional $15 and a slightly more extensive interview will get you a Global Entry card from U.S. Customs and Border Protection. This allows you to use an automated kiosk for customs and immigration clearance at major airports in the U.S.

If you have concerns or questions involving airport security, the TSA has a special office for help called TSA Cares. The office suggests contacting it three days before traveling at: (855) 787-2227 or TSA-ContactCenter@tsa.dhs.gov

3. Pre-select your seat before flying

Don’t wait until you get to the airport to select your seat. Most airlines allow you to choose your seat when you buy your ticket. Doing that may allow you to nab an aisle seat or one near a restroom. Many airlines now have two classes of coach seats: regular and premium. Premium, of course, costs a little more, but the extra legroom is worth it to me even though I’m only 5 feet 6 inches tall. Those few extra inches allow me to stretch my legs and even to stand. I also can squeeze past others in the row more easily if I wind up in a window seat. And things are a lot less uncomfortable if the passenger in front of me decides to put his or her seat back as far as it can go … right into my lap.

Premium coach seats are at the front of the coach section, which means there can be a downside to sitting in one. These seats are sometimes located far away from coach restrooms, which are only in the rear on some types of aircraft. I’ve found, however, that if I explain to a flight attendant when I first board the plane that I have difficulty walking in the aisle, they’re usually willing to allow me to use the higher-class restrooms up front on the other side of that blue “iron” curtain.

We all know that air travel isn’t as easy as it used to be. But a little advance planning can do a lot to smooth your flight.

(This first appeared as my regular column in Multiple Sclerosis News Today)

Is it Time to Treat Your MS to a Scooter Ride?

To scoot or not to scoot? Is is better to drag your legs around for as long as you can or to give in and get yourself a set of electric wheels?

That decision prompted this vent on a multiple sclerosis Facebook group recently:

“I’m just wondering if anyone has this happen to them. Every time I go to the store I have someone roll up on me in their electric scooter and tell me I need to get one. Every time my response is the same “I refuse to use one until I absolutely have no other choice” and then they shake their head at me like I’m crazy. Granted I know how I look pushing my walker (which I refused to use for a long time and just clutched onto walls) and dragging my dead weight of a right leg behind me, red faced and sweating with the effort, but for now I am able to walk so I do, is that really such a bad thing?”

For many years I felt the same way as that writer. It took one tripping fall too many, however, to convince me to find some walking help. I began using a cane; first a fold-up, used only occasionally, then a nice looking wooden cane that I used all the time. That was in the late 1990s, close to twenty years after first being diagnosed with MS.

I started using a scooter in the summer of 2000, when a colleague suggested that I rent one to get around the large Staples Center in Los Angeles, and Philadelphia’s First Union Center (now the Wells Fargo Center), while covering the political conventions being held in those cities. Riding, rather than walking, gave me the mobility that I needed to do my job. I scooted whenever I was at those venues and at the the end of each long working day I parked, plugged the scooter into its charger and walked out of the convention center. Without using the scooter someone probably would have had to have carried me out.

Four years later, my wife convinced me to buy a scooter of my own. My Pride Sonic (now called a “Go-Go”) separated into 4 parts. The heaviest was about GoGo-Sport-3W-Red40 pounds so I could disassemble the scooter, throw it into the back of my SUV and take it to work with me. That gave me two benefits, I could move around our news bureau, which covered 3 large floors, faster than anyone else and I also saved a ton of personal energy.

That Sonic also came along on cruises to Alaska and the Mediterranean with my wife and I but, eventually, it became too heavy and cumbersome to travel with.  So, enter the TravelScoot. This is a 35 pound scooter that can be folded

Two scooters

With another cruise passenger in Dubrovnik

like a baby stroller. I can ride it right to an aircraft door where it’s stowed, folded in a coat closet or unfolded in the cargo bay, and it’s returned to me at the door when we arrive. I still use a larger scooter, now a Go-Go, around town and to walk our dog. (And when we go grocery shopping, my wife rides the Go-Go and I ride the TravelScoot). But the TravelScoot is, as the name suggests, primarily my travel scooter. It’s wheeled me around the ruins of Ephesus, Turkey and been “tendered” from a cruise ship onto the shore at Santorini, Greece. 

I’m not advocating for a particular brand of scooter. An on-line search will turn up dozens, at prices ranging from around $900 to $4,500 or so. And you’ll probably have to pay for it yourself. Unless your doctor will certify that you need an electric scooter to get around in your house it’s unlikely that Medicare, Medicaid or your insurance will pay for it in the U.S.

I am, however, advocating that you not allow pride, vanity or a strict “use it or lose it” philosophy to stand in the way of getting yourself some wheels. It really helped to make me more independent and it made a big difference in the qualify of my life.

—-

(This post first appeared as my column on http://www.multiplesclerosisnewstoday.com)

 

Take Your MS on the Road

(This first appeared as my column in http://www.multiplesclerosisnewstoday.com)

“Round round get around.  I get around.”

I was humming that classic 1960s Beach Boys tune this morning (yes, I’m that old) as I thought about a feature story that I saw on one of the TV networks the other night.  The story profiled Cory Lee.  Cory has spinal muscular atrophy, which means he’s one of us gimps who get around on wheels.  For Corey, however, “around” means more than just wheeling around his neighborhood.  With the help of his mom, Cory has traveled to nearly twenty countries on several continents. And he blogs about it on curbfreewithcorylee.com.

If you’re stuck in a chair and you think you can’t travel, think again.  It takes some

istanbul

Istanbul

planning, and it may cost a little more than your average trip, but where there’s a wheel there’s a way.  Over the past ten years my wife Laura, my scooter and I have been all over Europe.  We’ve seen the Berlin Wall, traveled through the Vatican and taken a gondola ride in Venice. I’ve even rumbled over the ruins of Ephesus in Turkey and taken a tram up the cliffs of Santorini.  Closer to home, a visit back to the city where I grew up took us to see “Ground Zero” and the 9/11 Memorial and museum.

Cruising makes it easier

One of the things that make travel a whole lot easier for us is doing that travel on a cruise. These days, most cruise lines are used to dealing with wheelchairs and scooters and an accessible cabin, if you can get one, is a lot larger than a standard cabin..and at the same price.  Since you use the ship as your hotel you can visit multiple countries and only need helsinkito unpack and pack once.  The crews on the five cruises we’ve taken have all gone out of their way to help us, even lifting my scooter into and out of the small “tender” boat that’s sometimes used to ferry passengers from the cruise ship to the dock.  In Alaska, where we took a train to our ship, the train had a lift that took me, with the scooter, from the ground to the train door and I drove right on.

There are many shore excursions for cruise passengers.  Most involve large, comfortable  buses which have big luggage compartments underneath.  The scooter slides right in and out.  For more difficult locations, such as Ephesus, Turkey, Crete, Greece, St. Petersburg, Russia and Venice, Italy our travel agent hooked us up with a car and a tour guide.  It costs more but it allowed us to move at our own pace, see more places in a short amount of time and have help moving the scooter and dealing with any language difficulties.

Good travel info is just a click away

There are several travel agencies that specialize in travel for folks with disabilities.  Since we use a local agency I can’t vouch for any of these.  But sagetravel.com, flyingwheelstravel.com, (which sets up escorted tours), are two that I’ve come across on the internet.

There are also several on-line sites that can help you plan your trip.  If you think that a cruise is right for you I’d recommend taking a look at cruisecritic.com.  Not only can you scope out various cruise lines, ships and locations, it has an excellent forum devoted to disabled cruise travel. Gimponthego.com provides great one-stop-shopping for all sorts of travel info. Spintheglobe.net is a blog written by Sylvia Longmire, who has multiple sclerosis and who happens to be Ms. Wheelchair USA 2016.

If you can’t go far, go near

I know that some who are reading this may not be able to afford to travel like this. But there may be much simpler trips that can be made that are within driving, or even mass transit, distance of where you live.  My point is simply to encourage you to get around, no matter where that getting gets you.

 

 

 

 

 

 

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.

**

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.

 

 

 

MS bandana

Are You Ready to Enjoy Summer?

I love the summer.  I also live at the beach.  So, I’m just asking for trouble.

I can’t help it.  Being out in the sun is one of my greatest pleasures, followed by hanging around in the swimming pool at our condo.  Note that I said in the pool.  Staying in the cool water helps offset the problems that summertime temperatures create for those of us with MS.

Even if you don’t have a pool handy, there are still ways of staying cool in the heat.

The national MS Society has lots of good hot weather hints on its online magazine.

And there’s a great review of thirteen cooling vests on the web site www.activemsers.org.  Some of these vests, of course, can be expensive but the MS Society suggests that you try seeing if your insurance will cover the cost as an item of Durable Medical Equipment.  The insurancooling bandana 4-shotce code for that is E-1399.  If your claim is denied the Society also has instructions on their web site for filing a health insurance appeal.

For me, a simple and inexpensive neck bandana has worked well.  When I exercise in the heat I like to use it around my neck. It only costs a few bucks and it usually keeps its cool for a few hours.

Have you wanted to get onto the beach but walking though the sand is impossible? Most beaches are accessible, one way or another.   Ocean City, MD, where I live, has several beach wheelchairs which you can borrow.  Many other beaches have the same set-up. The beach patrol usually coordinates the chairs.  At some beaches you can reserve a chair while at others it’s first-come, first-served.  Of course, you need to have someone to push you. ed on beach buggy If you fly solo, or if you spend a lot of time on the beach, you might want to consider buying something similar to what I use.  (Obviously, this isn’t a summer picture but it’s all that I have).  This beach buggy was made by a fellow in California who’s a quad.  It was expensive, and it took him forever to build and ship it, but it gets me out on the sand, it’s loads of fun, and it’s fast!.  I don’t want to make a recommendation but you can find several folks who make these if you search on-line.  In San Diego, California you can reserve a power beach chair like mine, to use free of charge, at several beaches.  For more info, check with Accessible San Diego at: 619-325-7550.

Some beaches, like a few in New York City, even roll out a blue carpet to make your access easier.nyc beach ramp

Here’s a look at some accessible beaches, near and far.

At the beach I can walk into the water if a couple of people help me and the surf is light.  The undertow makes getting out more difficult.  But if you’re not that mobile Adam Lloyd, who writes the Gimp on the Go web site, has come up with a unique idea.

 So, one way or the other, there are ways to have fun in the sun while staying cool.
Have some ideas of your own?  Let us all know with a comment.

 

 

 

Good Test Results for Primary-Progressive MS Drug Ocrelizumab

My neurologist tells me “the buzz is good” about ocrelizumab.

The investing web site Motley Fool calls it “the revolutionary Multiple Sclerosis drug you’ve never heard of.”

Ocrelizumab, which Genentech hopes to market under the name Ocrevus, is special because it’s designed to treat primary-progressive, as well as relapsing-remitting, MS.

How does it work?

I’m not a scientist, but after reading a lot of scientific writing here’s my best attempt to ‘splain it in “people-speak.”  (I’ve linked to some of these reports in case you want to wade through yourself).

B-cells are white blood cells that create infection-fighting antibodies. In MS patients some of these B-cells carry abnormal antibodies. Scientists believe these “rogue” B-cells play a role in the way the immune system attacks the brain and spinal cord tissues in MS patients.Ocrelizumab diagram crop

Ocrelizumab binds to a molecule called CD20 on the surface of B cells and depletes those cells from the circulation. The result appears to be a reduction in MS activity while still leaving the immune system capable of fighting off infections such as PML, a very dangerous potential side effect of the current group of powerful MS drugs.

Ocrelizumab is similar to rituximab, marketed as Rituxam, in the way it works. But rituximab is a CD20 antibody that is derived from mice and humans.  Ocrelizumab is derived from humans.

Encouraging test results

Genentech recently announced encouraging results from a Phase 3 study of 732 primary-progressive MS patients.  Ocrelizumab was administered intravenously; two infusions given two weeks apart every six months. The results showed that the drug reduced the risk of disease progression, as measured by the Expanded Disability Status Scale (EDSS), by 24-25 percent compared to a placebo.  MRIs also showed a large 17 percent reducti0n in the rate of brain volume loss.

Data from two related Phase 3 studies, testing the efficacy of ocrelizumab in 1,656 patients with relapsing forms of MS, found that it was superior to interferon beta-1a, reducing the annualized relapse rate by nearly 50 percent over two-years of treatment.

What’s next?

This past February the Food and Drug Administration designated ocrelizumab a Breakthrough Therapy for use as a possible primary-progressive MS treatment.  That designation allows quicker drug development and FDA review.

Roche says ocrelizumab is the first investigational medicine to show very positive results with both primary-progressive and relapsing-remitting MS patients. The company says it plans to submit data from all three studies to the FDA this year.  If so, it’s possible there could be FDA action on the drug by the end of the year.

 

%d bloggers like this: