Month: April 2011

Accessible Travel: Amsterdam

“I amsterdam” near the Van Gogh Musuem.

Last month I traveled to Europe with some friends, we started out in London and the next city on our itinerary was Amsterdam.

We flew from London to Amsterdam on Easy Jet – which is normally the cheapest way to go, unless you are overweight on your luggage. Be careful, the overweight fees are not cheap. When we landed in Amsterdam we encountered our first access adventure. The plane required passengers to climb down a set of stairs, well we all know that was not going to happen in my case. They told us they had a special climbing chair that could take me down them. It was quite an interesting contraption and a step up from the chair they used in Macau – basically in Macau they just carried me down by hand. Scary! The chair in Amsterdam was literally a climbing chair that required two employees to guide it down the stairs. Fairly easy, quick, and I felt safe. After the stair climbing chair ride, the staff loaded my friends and I into an accessible van and drove us to the baggage claim area.

From the airport we needed to take a train to central Amsterdam. We bought our tickets and went to the information counter to request assistance with boarding because we needed a ramp. The worker at the counter scolded us for not making reservations in advance and told us we would have to wait 2 hours to board the train. However, one of his much nicer co-workers showed up and got us on the next train. Train travel in The Netherlands was hit and miss, we learned to arrive early and arrange for a ramp. The train workers we encountered were either super nice or super rude – there was no in between. And not all of the train stations in The Netherlands are accessible. For example, Delft had a set of stairs from the platform to the street and huge step to get on and off the train. With Lonnie and Traci’s help I was able to manage, but it was work – for all of us.

The city of Amsterdam, in general, is very accessible – mostly because all the curbs have cut-outs for the many, many, many bikes. Because I knew places in Europe tend to be smaller and less accessible I took a bike lock with me for my scooter. Having been to Amsterdam a couple of times before I knew it would be easy to find bike stands – they are everywhere! Having the bike lock gave us more options for restaurants and shops. If you can walk a little, even with a cane I highly suggest you take a lock with you to secure your wheels should you want to explore some of the smaller shops and restaurants.

Most of the museums and attractions are very accessible – but you still may want to call ahead. We came across two tour companies that offer accessible canal tours – one even offered a nighttime cruise. Again, call ahead and make a reservation because there is limited wheelchair space.

In conclusion, I feel the city of Amsterdam is small enough and accessible enough for wheelchair users to enjoy – that is if you don‘t mind the smell of pot. If you plan on visiting other parts of The Netherlands, I suggest you rent a car and avoid the trains. Good advice from my local friends that I wish we had followed – but I was out voted.

My friend Tessa showed us around, it was great to have a local tour guide and translator.

Marathon Monday


Monday, April 18th was the day of the 115th Boston Marathon. Over 24,000 runners from all over the world, took to the streets of Boston and pushed their bodies to the limit.

Everyone seems to have their own personal reason or reasons for running. For one runner, I was a reason. Angela DeLucco ran in my honor! You can read more about Angela and her fellow Genzyme runners HERE.

Angela finished the marathon with a time of 5:37:09. Way to go!

I will probably never be able to run a marathon, but on Monday I ran step by step with Angela – in spirit.

Congratulations to all the Genzyme runners! You are amazing!

Angela and I in Boston enjoying lunch at Genzyme. March 2011.

Crafting for a Cause


It has taken me some time, but I think I finally have everything ready to go. Now I just need some shoppers!

For months I have been quietly working on creating a jewelry line to sell online for the purpose of helping to raise funds for Pompe research. The process has taken a lot longer than I thought it would, mostly because of my busy travel schedule.

This whole new adventure started because Pompe has given me a bit of down town where I am more or less tied to a chair, either for infusions or during my EMG treatments. I wanted to do something to keep myself busy other than just surfing the internet, reading books, or watching movies – I wanted to create something. I started making necklaces just for myself, then I decided it would be a great way to raise awareness for Pompe if I sold them and donated a portion of the proceeds to Pompe research – specifically to the University of Florida Foundation.

One of my favorite creations, the Sugar and Ice necklace. I have a similar one that is blue and white and I wear it all the time.

I finally did it. This week I finally posted a few necklaces online through Esty. I named my shop pearls4pompe. Each design will feature either pearls as a major design element or will contain at least one discreetly placed Pearl of Wisdom (pearl beads, not real pearls of course).

So stop by pearls4pompe and take a look around. I only have a few items currently listed but there will be more soon.

Accessible Travel: London



I love London! Have wheels and passport will travel!

As London prepares to host the 2012 Olympics and Paralympics their accessibility for travelers increases with each renovation. Still, traveling through a city with cobble stones and buildings that date back hundreds of years present many challenges and obstacles to those of us with mobility issues. I will give them major credit for improving conditions and everyone we encountered in the tourism and hospitality industry was friendly, compassionate, and very helpful.



Lonnie, me, and Traci after enjoying Dim Sum in Chinatown.

London is probably my favorite city, and I could easily live there again. I was a little concerned that it would be very difficult to navigate around this historic city and that it would never be the same for me because of my mobility challenges. But I was able to do and see some of my favorite things – with a little help from my friends, Lonnie and Traci. Thanks girls!

Transportation: If you use a wheelchair or have trouble with climbing stairs, then take the bus. The London underground is very old, and while some of their stations claim to have step-free access from the platform to the street we discovered that was not entirely true. If you look at the London underground map and use any of the stations marked as accessible you will find lifts to take you to and from the platform, however there will almost always be a step (and often a gap to mind) from the platform to the subway car. What they need is a system like I found in Copenhagen where they simply put down a lightweight ramp for a wheelchair to roll on and off. Luckily I was traveling with Lonnie and Traci who would carry my chair on, and usually I would drive it off – to the shock of our fellow passengers. Again, take the bus as all London public busses are accessible. If you choose to take one of the hop on/off tours (which I highly recommend to anyone visiting a place for the first time) note that only a portion of those buses are accessible so you may end up waiting for the next bus, which isn’t bad – except if it is cold, raining, and windy.

The busses make the journey a little longer than taking the tube, but you do get to see more of the city that way.

Lonnie and I with the Tower Bridge.

A word to the wise about using the buses – make SURE your bus driver knows where you want to get off. London busses don’t have a special call button that requests the ramp like most US buses have. You have to make sure the driver knows where you want to end your journey. If you are traveling with friends it wouldn’t hurt to send one of them up to the driver to remind them about lowering the ramp. My friends and I were on the bus and told the driver we were getting off at Regent Street. When the we got to that stop, Lonnie jumped off with the other passengers while Traci waited with me for the ramp – that was never deployed! Off we were down Regent Street with Lonnie running after the bus. Traci went up to the bus driver and told him we meant to get off and needed the ramp, he seemed to forget and could care less. She stayed there until the next stop so he wouldn’t forget again. Luckily it was only a few blocks from where Lonnie got off and we headed back to her. Funny story, when this all went down the other passengers on the bus started yelling at the bus driver too because they thought Lonnie was our mom! “You lost your mum? What are you going to do?,” was what this one lady kept saying to us over and over again. No worries, we met up with our panicked “mum” shortly and were on our way.

Accommodation: Again in preparation for the Olympics many hotels are making their properties more and more accessible. For wheelchair users you will want to ensure your hotel has “an accessible path of travel” at the very least. Expedia is great for researching the accessibility of hotels. Finding an actual accessible room in London will be a challenge as each hotel only has a few. The real problem we ran into was that we were a party of three and the limit on most accessible rooms is 2 people.


Traci and I at Buckingham Palace.

Shops and Restaurants:

Like most European cities these are going to be hit or miss with steps and ramps. And even if you can roll into a shop or restaurant, the space inside can be very cramped. I took an 8 foot long bike lock with me just for this reason. I could lock my scooter up outside and then walk into the restaurant or shop.

Museums and Attractions: Most London museums are accessible as are most of their attractions to a certain level. The Tower of London has limited access because of the amount of old, spiral, and uneven staircases. However there is still plenty to see and do at the Tower including seeing the Crown Jewels and if you can manage 5 steps with a handrail you can go into the chapel.

Concessions: This is a word you want to learn. Tons of London attractions and even theatres offer “concession” tickets which are discounted tickets for disabled and elderly visitors. Additionally, they also often offer a free caregiver ticket. This saved us a lot of money. If you don’t “look” disabled you will want to bring some sort of documented proof with you. Call the location and ask what they will accept for proof.

Best play ever!

Theaters: No trip to London is complete without an evening in the West End. Some of these theaters are small and very old, yet they will make every effort to accommodate you. The larger venues that usually host the big budget musicals often have the latest and greatest gadgets to get you and your wheels into the seating area.

We saw two shows this past trip, one large and one small. We saw In a Forest Dark and Deep (the best written play I have ever seen, and I have seen A LOT!) at the Vaudeville Theatre which is one of the smaller ones. We had do some creative planning in order to see this show. Because the theatre is so small, I had to transfer to a standard wheelchair but fire laws prevented us from being able to store my scooter anywhere. I had the bike lock, but didn’t fancy locking it up for 2 hours when I couldn’t peek out the window and watch it like I could in a shop or restaurant. We ended up storing at the left luggage site at Charing Cross station. This only works if you have a scooter that breaks apart like mine into pieces that are small enough to fit through a standard luggage x-ray machine. My friends dropped me off at the theater where the staff rigged up a wheelchair into this tank-like stair climbing contraption. Because I had to wait for the entire theatre to clear and for my friends to collect and bring back my scooter I got to meet and chat with the writer and director Neil LaBute! Being last out of the theater can have its advantages.

On my way to see "Wicked" - I travel in style!

We also saw Wicked at the Apollo Victoria Theatre. This theater was much larger and had stair lifts installed to get me from the street into the lobby and from the lobby to our seating. I did have to transfer to a standard wheelchair, but they did have room to store my scooter.

Always call ahead to verify the availability of wheelchair space and the extent of their “accessibility” because as we learned there are many levels of accessibility and only you will know what works for you.

With my real life friend Lee who just happens to be part of the amazing staff at Madame Tussaud’s.

With some attractions, like Madame Tussaud’s you really should book in advance because they can only have a certain amount of wheelchairs in the building at one time – fire laws again. That being said, the staff at Madame Tussaud’s couldn’t have been nicer and more accommodating. We did book a time in advance and that helped, but everyone we came into contact with was extraordinary. Please note that it is their policy that anyone arriving with any sort of mobility device will not be allowed to ride the Sprit of London attraction (slow moving amusement park type of ride)- evacuation stuff again. There is a café attached to Madame Tussaud’s gift shop with access to the street via stairs, but they do have a stair lift. You just need to ask one of the workers for assistance and they will be more than happy to help you out.

All in all, London is surprisingly accessible for disabled travelers, you just have to do your research and you can’t do it all online. You have to make phone calls.

I still love London and can’t wait to go back!

On my way to an important meeting with the Prime Minister. 😉