Flying With A Motorized Wheelchair: An Interview

Traveling with a disability can be difficult at times, but traveling with a motorized wheelchair presents special challenges. I learned more about those challenges when I accompanied my good friend Karen on a trip last summer.

Karen lives with primary progressive multiple sclerosis (PPMS) and uses a motorized wheelchair to get around. She was headed to an MS event in Chicago to discuss an upcoming MS medication, and I accompanied her to provide assistance in the airports and to ensure safety in the hotel.

This was my first time traveling with such complex equipment and the experience was truly eye-opening as there was nothing simple about the process. I’ve asked Karen to share what she has learned about flying with a motorized wheelchair as she travels the country as a patient advocate.

Lisa: Karen, how long have you lived with MS and what kind of wheelchair do you use?

Karen: I was diagnosed with MS in February 1996, but distinctly remember symptoms in August 1994. My wheelchair is a Permobil M300 with the capability to recline, tilt, and raise up. It weighs 345 pounds, has headlights and taillights, and can go about 6 miles per hour. I use the chair because of bilateral weakness of my lower extremities and extremely poor balance, which combined seriously limit my ability to walk. The wheelchair gives me freedom and allows me to maintain my independence.

Read this post in its entirety:
Traveling By Air With A Motorized Wheelchair

Invisible MS Symptoms Mask Disabiltiy

MS is such an invisible disease. Very few of the symptoms can be seen or detected by others, and only if they are really paying attention, they may notice tremors, inability to walk, balance impairment, speech problems, or bladder/bowel issues. Many MS symptoms cannot be seen, such as pain, spasticity, numbness, itchiness, fatigue, vision problems, dizziness, cognitive problems, or emotional changes.

Most of the time I do not look disabled. I am blessed to be able to move around easily, only getting noticeably fatigued with severe heat or exertion. Symptoms such as spasticity or pain respond to medication, exercise, and rest. Very rarely have I lost bladder control in public and even then I was able to go home to get cleaned up and change clothes.

To look at me, you can’t tell that sensation is diminished in my feet and ankles. My proprioception is affected and I dare not stand with my feet together and close my eyes for risk of losing my balance and falling. I am careful how I place my feet on the ground to avoid the ‘kissing the sidewalk’ symptom which I’ve experienced on a number of occasions. Those face plants are no fun and can cause extreme embarrassment and pain.

When invisible symptoms are hard for others to see...or hear.

Last weekend one of my invisible symptoms - impaired balance - caused a public disruption. I was in the airport in Newark, New Jersey, when TSA agents at the security checkpoint repeatedly asked me to stand in the body scanner machine. I’m not sure what went wrong the very first time I stood there. But in repeated attempts in the machine, the agents complained that either my feet were not far enough apart, or my hands weren’t high enough, or I wobbled which made the image blurry.

Read this post in its entirety:
Invisible MS Symptoms Can Cause Frustration and Mask Disability

Life with Chronic Illness is Unpredictable and Often Disorganized

When I first opened our bags after we arrived, everything was neatly folded and rolled up into perfect flat squares and uniform cylinders. It was easy to know exactly where everything was located as I was the one who packed our bags. But as soon as we began to pull out individual items to choose between the limited selection of clothing we brought, organization and uniformity dissolved.

Living with multiple sclerosis, or any other unpredictable chronic disease, can feel as though the neat pieces of life quickly become disorganized and disheveled. Symptoms can unexpectedly emerge and demand your attention. A relapse may threaten to derail your activities and send you looking for alternative solutions to situations which arise. Your neat life becomes a temporary mess.

On day four of our holiday adventure, the suitcase on the bedroom floor has become a mixture of folded organization and rifled through belongings. But for the most part, we can still find what we want although it may not be where we thought it had been. We haven’t yet reached the point where we’re asking each other, “Honey, have you seen [insert description of desired item]? I can’t find it. It was right here yesterday, I thought.”

Read this post in its entirety:
Living Out of A Suitcase

Carnival of MS Bloggers #146

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Just This Moment - A Trip Report from Provence

by Joan of A Short in the Cord

It has been over two months since I returned from my trip (aka my “heroic journey”) to Provence in southern France.  

I continue to process my feelings and experiences from that great adventure, but think it's time to share some things with you because people keep bugging me asking me, "was it a good trip?" :-)

Okay, so I brought back some things: postcards from the Chez Christine café in Saignon, bookmarks from an art gallery in Bonnieux, jams from a cherry festival in Casenuve, tapenades and placemats from a souvenir shop in  Fountain de Vaucluse.

I ate tender and tasty lamb wrapped in eggplant in St. Pantaleon les Vignes, and rabbit in Apt.  I tried goat cheese, sheep's cheese, French coffees and wines.  I marveled at the amazing geology of the mountains, explored the trees and plants, and tried to identify birds.  I hiked, I drank, and I sat by the pool having deep conversations with deep people.  I said "wow" and "yum" a lot!  It was exotic and exciting.

But I was exhausted for almost the entire trip.  I'm not complaining.  Really.

I'm reminded of the song "My Body" by Young the Giant, which goes "…my body tells me, 'no,' but I won't quit 'cause I want more." And I wanted more of the experience of France.

I had physically prepared for this trip by working out and increasing my time and distance on the treadmill.  But I also studied meditation and practiced awareness, and worked on living in each moment. 

I had no problem with the walking, the climbing, the carrying luggage.  But I did have a problem with fatigue from over- stimulation, communicating in another language, dealing with disruptions in routine.  By the third day, I wrote in my journal that I was scared, didn't think I could make it to the end of the week because I was just so tired, so overwhelmed.

But then my zen training took over and I told myself to live in the moment.  Just this moment.  Right now.  Only right now.  Don't worry about the rest of the week, worry about just this moment.  And I can get through this one moment.

I savored each moment.  Then another.  Then another.

As I mentioned earlier, I brought back a few souvenirs (and pictures).  But they really don’t matter.  What matters is that I brought back a desire to continue to have fresh experiences, a willingness to try new foods, and a renewed confidence that I can go out in the world again with multiple sclerosis and debilitating fatigue.  Even if it's just for one moment.

So, YES, it was a good trip!


Back to Home Page

PS - In case you missed it, here are links to my Heroic Journey:
Part 1 - The Call
Part 2 - After the Call Is Answered
Part 3 - What to Take on a Heroic Journey

This concludes the 146th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 19, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 17, 2013.

Comments for this post.

Fighting Heat Sensitivity on Vacation

Summer time is in full swing here on the East Coast.  We’ve had temperatures in the 80’s and the grass is growing like weeds.  Actually we do have some weeds where there shouldn’t be since we’ve been getting tons of rain during the past month.  Definitely not drought weather here.

But with heat and rain (and humidity) come annoying MS symptoms and potential pseudoexacerbations.  If you are heat-sensitive (like me), then a trip to the beach may be a challenge.  I’ve been very fortunate lately and my MS has been fairly quiet.  But in gathering supplies for the trip, I’m being confronted with the reality of what it may take to have a good time.

On the top of my list is a battery operated fan which I picked up on clearance at a department store years ago for less than $2.  Actually I bought two.  Best summer money spent ever.  They even came in handy when we lost power last year during to storms and thus lost air-conditioning for a few days.

Read this post in its entirety:
Headed to the Beach with MS

Meeting RA Blogging Friends in Person

Read this post in its entirety:
Seamus Mullen and the RA Blogger Summit in NYC

Victory in Victoria, British Columbia

(Previously unpublished post from the Alaska Cruise in 2010.)

Our final stop on the 2010 Alaskan cruise was Victoria, British Columbia. Rob and I visited the Butchart Gardens, a 55-acre estate which hosts the famous Sunken Garden created in a former limestone quarry.

Photo opportunities abound throughout the property including innumerable varieties of trees and flowers, a snake sunning itself on a stone wall (watch where you sit!) and a hummingbird feeding.

Flamingos, koi, tropical foliage, orchids, and butterflies with wing spans ranging from one to nine inches were seen at the Butterfly Gardens. Some of the butterflies, like the one to the left, had just emerged from the cocoon and were drying out their huge wings.  Other butterflies were flitting about so quickly that it was difficult to grab their picture.

Word of caution: the controlled tropical environment can be a challenge if you are heat-sensitive. I was happy to find benches available.

Before heading back to the ship, Rob and I stopped for a “tasty beverage” (aka beer) and a bite to eat. We listened as people at the next table were discussing the business of art auctions on cruise ships. We soon realized that they were talking about the auctions on our cruise ship. Very interesting conversation.

We were hungry and probably anything would taste good, but the seafood chowder was so good at The Sticky Wicket, an English pub, that Rob and I returned during a subsequent visit to Victoria in 2011. Oh, and Rob approved of his beverage as well.


Reflections
Two years have passed since Rob and I embarked on this once-in-a-lifetime voyage. The greatest memories come from the people (ladies at our dining table were a hoot), the connection with other MSers, and the time spent exploring the area. We enjoyed ourselves so much that we joined Rob’s family on another cruise to Alaska the following summer, making it a twice-in-a-lifetime adventure.

Our Trip to Switzerland

At the Löwendenkmal (Lion Monument) in Lucerne, Switzerland.

Sailing on Lake Lucerne with the Alps in the distance.

Swans on Lake Lucerne and the Bahnhof.

From the boat on Lake Lucerne, Switzerland.

The famous Spriingli chocolate shop on ParadePlatz in Zürich, Switzerland.

White Rabbit and Top Hat at the Dolder Grand Hotel in Zürich.

Sculpture of Grossmünster Protestant church in Zürich.

Random bride and groom being photographed on Rathausbrücke in Zürich.

What will your doctor do if you make an unusual request?

With all the traveling I had been doing and with MS symptoms bubbling up under the surface, I was concerned that a full blown relapse might occur during vacation.  A single pulse of steroids would have been welcome during all of this, as much as steroids are welcome at any time with their pros and cons.

I ended up calling my neuro's office to ask for a prescription of oral steroids to take with me 'just in case' on my last trip, the cruise to Alaska.  I didn't want to wait up and need to rely upon the ship's doctor who would likely have no clue with to do with me, nor the treatment necessary.

Trust is necessary in this situation where I'm calling out of the blue making an unusual request.  Turns out that my nurse practitioner did fill my request and I took a bottle of Decadron with me on the trip.  Fortunately, I didn't need to use the steroids and fortunately I have a good relationship with my healthcare providers.


Read more about this story:

Trust Between Doctor and Patient is Vital: MS, Steroids, and Vacation

Blue Ice and Still Waters

On the 5th day of our cruise, we traveled up the Tracy Arm Fjord to visit the Sawyer Glaciers. It was an early morning and actually the coldest on our trip.

Here is a view early in the morning near the entrance to the Fjord.  You can tell that no one had been through these waters yet that day. 

The Fjord is so narrow that only one cruise ship can travel it at one time. Wednesday was our day. Winding through the turns of the Fjord affording us many different views.

As we approached the glacier itself, most everyone on the ship was trying to get that picture-perfect view.

I was fascinated by the lines visible in the glacial ice. We were told that the lines were a sign that two glaciers were crunching into each other.  You can see here that even more than two glaciers are coming together.  It was truly beautiful.

Yes, the ice is that blue!

Harbor seals like to hang out on the icebergs. It took me awhile to figure out where people were seeing the seals. But once found, they became easy to spot.

Here's a seal swimming around an iceberg. Getting a bite to eat perhaps.

As we were leaving Tracy Arm Fjord and traveling toward open waters of the north Pacific Ocean, we passed a small vessel traveling up the fjord.  Yes, that smallish white blob in the middle of the photo is a boat.  I hope this helps to demonstrate the grandness of the landscape.

And still the waters are so very calm.  Later in the day and the following day, we were definitely NOT in calm waters.  The ocean created much turbulence, rocking, and swaying.  Several people did not handle it well, but thankfully Rob and I seemed to be just fine.  A little headachy but that's all.

One more day on the cruise in Victoria, British Columbia, before we return to Seattle.  In the meantime, enjoy this 6-minute video I took as we approached the Sawyer glaciers.

Related Posts:
The Rainbow Connection
Beginning of an Adventure
In Seattle for a Day, Kissing the Sidewalk
And They're Off!!
Whales, a Glacier, and Hottubs
On the Rails in Skagway
Blue Ice and Still Waters
Victory in Victoria, British Columbia
Who Knew Washington Could be HOT!!

On the Rails in Skagway

It's about time, I pick up the story of our Alaskan cruise.  The day after Juneau, we disembarked in Skagway, Alaska.  This was to be a very early morning since Rob had to get off the ship before 7 AM for a hiking excursion.

I tried to sleep a little longer, but was rather unsuccessful.  So what's a girl to do?  Go shopping!!

With plenty of time in the morning, I ate a leisurely breakfast (which was very smart because I didn't get to eat lunch until dinner time).  Then it was time to go into town which wasn't very far at all.  With our great luck, the day was gorgeous and beautiful.  Maybe a tad bit hot.

Next: The White Pass and Yukon Route Railroad.

"Built in 1898 during the Klondike Gold Rush, this narrow gauge railroad is an International Historic Civil Engineering Landmark, a designation shared with the Panama Canal, the Eiffel Tower and the Statue of Liberty.

The WP&YR railway was considered an impossible task but it was literally blasted through coastal mountains in only 26 months.

The $10 million project was the product of British financing, American engineering and Canadian contracting. Tens of thousands of men and 450 tons of explosives overcame harsh and challenging climate and geography to create "the railway built of gold."

The WP&YR climbs almost 3000 feet in just 20 miles and features steep grades of up to 3.9%, cliff-hanging turns of 16 degrees, two tunnels and numerous bridges and trestles. The steel cantilever bridge was the tallest of its kind in the world when it was constructed in 1901. 

The 110 mile WP&YR Railroad was completed with the driving of the golden spike on July 29, 1900 in Carcross Yukon connecting the deep water port of Skagway Alaska to Whitehorse Yukon and beyond to northwest Canada and interior Alaska."

The scenery truly was breathtaking as we climbed higher and higher into the mountains.

More train pictures with the Sawtooth Mountains on the right.

 

After a long train ride which took us to the border of British Columbia and back, what's some hungry goldminers to do?

Attempt to avoid spending too much money in the shops and head over to the Skagway Brewery to pick up a free hat.  The only catch with getting the hat (besides having a coupon) was the you had to got to partake in their beer samples.

I particularly enjoyed the seasonal Spruce Tip Ale which is said to be chocked full of vitamin C.  It was yummy! 

Sunset as we left Skagway.

Related Posts:
The Rainbow Connection
Beginning of an Adventure
In Seattle for a Day, Kissing the Sidewalk
And They're Off!!
Whales, a Glacier, and Hottubs
On the Rails in Skagway
Blue Ice and Still Waters
Victory in Victoria, British Columbia
Who Knew Washington Could be HOT!!

Whales, a Glacier, and Hottubs

The first stop on the cruise was in Juneau, Alaska.  I was really looking forward to this day as we had planned on enjoying the all-day excursion.  Whale-watching in Auke Bay, salmon bake, Mendenhall Glacier.  Rob got up early and I joined him as we watched the scenery coming into port.

Our whale-watching excursion began with a bit of excitement when we spotted three Orca "killer" whales on the way to the salmon bake.  We were told that while humpback whale spottings are highly expected, only about 10% of these catamaran tours saw killer whales.  We were extremely lucky and the crew showed genuine excitement.

Lunch was served at the Orca Point Lodge located on Colt Island.  Across the way we could see Admiralty Island which is said to have the highest number of brown bears per square mile than any other place in the country.

After lunch, we saw several Bald Eagles simply hanging out in the trees or on the rocks.  Can you see the eagle in the photo to the left?

There was so much great stuff to see on this trip.  I enjoyed watching the Stellar sea lions play for a little while.

I think it was around this time that the memory card filled up on my camera.  Thankfully my friend Jean had recommended that I get a spare battery for my camera.  While I was at it, I purchased several extra memory cards.  I was able to switch it out quickly.

Good thing because it wasn't too long until we found a group of about seven Humpback Whales who were bubble feeding.  Rob got some great photos while I try to get as much as I could on video.  I haven't editing any of the video footage yet, but here are a couple of very nice pictures.

Next stop on our excursion was to the Mendenhall Glacier.  Rob and I were completely impressed with the beauty of the area.  We took a walk to Nugget Falls which was enormous, but dwarfed by the glacier itself.
 

It took me about 30 minutes to walk to Nugget Falls where you could feel the mist even from a distance.  It was really unbelievable how we lucked out on such glorious weather.

Rob and I took several photos.  As we began to walk back to bus, we realized that we were going to be cutting it close.  The bus driver had given us one hour to spend at the glacier.

Well, we missed the bus.  Fortunately, a bus driver from the same line who was there with a different group picked us up as "strays" and took us back to the ship.

It was so warm that Rob and I had left our fleeces on the original bus.  We figured that we may have just lost them permanently.  However, we even got those back after waiting at the dock for a little while.  After all these delays, we were over an hour late for dinner but our waiter served us anyways.

It really was an exciting day!!

I was exhausted and becoming very stiff from all of the walking during the afternoon.  In an attempt to counterbalance the spasticity which was attacking, I made use of the hottub onboard the ship.  I soaked those muscles into submission and went straight to bed as we would be in Skagway the next day.

And They're Off!!

Hard to believe, but it's been three weeks since we embarked upon the cruise to Alaska.  Our time in Seattle was eventful but the cruise was to be the main attraction on this journey.

We met such wonderful people already, how could this trip get any better?

After settling into our cabin on the ship, Rob and I ventured up top to watch the scenery as we voyaged into the waters of the Pacific Ocean.  There were the Olympic Mountains on the left and the line of cruise ships behind.  I found this image to be humorous (and the inspiration for this post's title).

That first evening on the ship was relatively calm.  We went to dinner and discovered that, although I had called the travel agent and specifically requested that our party of two be seated at the same dinner table as Jen's part of four, we were seated with strangers.  Ironically, some of the folks at our table were also supposed to be sitting with friends who had been misplaced.  Oops.  Fortunately, everything got rearranged so that Rob and I could be entertained at Jen's table by some truly great individuals.

What a good-looking motley crew we make.  The photo above was taken during our first "formal" evening onboard the ship.  Pictured from left to right:

• Top row - Mary (Jen's mom), Norene (Jen's friend), Jen, Lisa, Rob (Lisa's boyfriend)
• Bottom row - Nancy (Jen's aunt, who reminds me very much of my own aunt Nancy) and Elaine (a wonderful MSer who was a great of fun and who playfully encouraged Rob to get moving in a direction which has been discussed.....and discussed.....and.....)

I thought that we looked pretty spiffy that evening.  What do you think?

It was about 8PM when this photo was taken.  Notice how the sun isn't even thinking about going down yet.  I loved it!

One person I was very happy to meet in person is Cathy of Navigating the Journey of MS.  We ran into each other several times on the ship and finally sat down for a photo.  Here's a moment where Cathy and her husband caught me shortly after I was in the shower.  Notice the wet hair.

Coincidentally I was also wearing one of Cathy's t-shirts.  "I do shots!"  I like it, even if I don't do shots any longer.  Although I did do an alcohol "shooter" later in the cruise.  However I didn't really feel any alcoholic effects from that drink.  Interesting.

Right before the cruise, Cathy held a contest on FB for the first person who could identify one of the new bears she carries on her website The MS Shoppe.   I won!!  As the prize, I received one of the bears which she delivered to me in person on the cruise.  It's a nice reminder of the trip and of meeting Cathy.

Now finally, we had lunch with all three MS bloggers. 

There are still many more stories to tell, but here's one which still makes me smile.

One evening while sitting at the dinner table, I notice a woman smiling at me.  Reflexively, I smile back.  Then I looked away so as not to appear staring.  She came around the table and asked, "Are you Lisa?"  Yes, I am.  "Lisa from Brass and Ivory?"  Yes (I blush).

Susan J. from northern California was the only person on the cruise who recognized me from my blog (other than Cathy and Jen of course).  My waiter interrupted our brief conversation while taking my order.  But we quickly got back to introductions before Susan sat at her table and I heard her explaining who I was.  :-)

What a special thrill!!  Being recognized from a little blog such as this one.  It really made my day, my week...well, heck, I'm still smiling about it.  Thanks Susan, it was wonderful to meet you too!  Too bad I didn't think to get your picture.  Sorry.

Next time, I'll share a few photos from glorious Alaska and tell some tales of Juneau and Skagway.  This was truly a scenic trip indeed.