Month: September 2010

Accessible Travel: Copenhagen, Denmark Part 1


Dad and I enjoying lunch at the Carlsberg Brewery - we're not big beer drinkers, so we opted for free soda instead of beer at the end of the tour.

I’ve just returned from my annual father-daughter trip. This year we went to Copenhagen, Denmark. Each year instead of exchanging gifts and cards for birthdays and holidays, my father and I embark on a vacation together. Because of the difficulty I experienced with Pompe Disease, from the long diagnosis process, the pain and mobility issues, and putting together a treatment plan this was the first overseas trip I’ve been able to take since my condition really starting going downhill back in early 2009. I love to travel, and having that passion potentially sidelined by Pompe was not something I was happy about – so this trip meant a lot to me!

Since starting my treatment plan earlier this year, which includes Lumizyme infusions every other week, daily physical therapy, and a special diet I feel so much better than I did when 2010 began. With my new found strength (I still have a very long ways to go and still need a mobility scooter) we decided it was time to try an overseas trip. We chose Copenhagen for a couple of reasons. Neither one of us had ever been there (which is shocking because my father has been to almost 60 countries and I lived in Britain for over 2 years). Copenhagen claims to be “one of the most accessible European cities,” but there is only so much you can discover through the internet and we knew we could be taking a big chance traveling overseas which my mobility challenges. But, one of my new mottos is: I’ll never know what I CAN and can’t do unless I try. So we booked our trip, packed our bags and set out to discover Scandinavia.

Copenhagen is a picturesque city with an interesting history, filled with amazing sites, people, and delicious food. The people of Copenhagen couldn’t have been nicer and everyone seemed to go out of their way to offer to help. Locals stopped us on the streets to see if we needed directions, shop and restaurant staff members did everything they could to accommodate or try to accommodate me, and one patron in a coffee shop even asked if he could get my order for me when he noticed there were steps leading into the shop!

And as far as its claim to be accessible, I have to say for a European city that has streets and buildings that are older than America, Copenhagen is very accessible. There are of course places your wheels will not be able to take you, but like me – just focus on what you CAN DO! And in Copenhagen there is a lot you CAN DO if you have mobility issues.


Me using the hand-placed ramp to exit the train. The regional trains and city buses are really your best bet for accessible tourist travel around Copenhagen.

The Metro, regional trains, and buses are all accessible. The s-train and the canal boats are not. The Metro however, does not really go to many tourist areas – it seems to be targeted more at getting the locals to and from work. In all honesty, you can get around the major sites of the city on foot (or on wheels) pretty easy as everything is fairly close together, and what is not can be easily reached by bus or regional train. The red Hop On Hop Off busses are also accessible and are a great way to see the city and get the lay of the land.

When boarding the trains, you need to get the attention of one of the staff members because they have to lay out a ramp by hand in order for wheelchairs to board. A good spot to wait is at the front of the train and as it approaches simply wave at the driver indicating you’d like to board and he/she will assist you.

Because Copenhagen is such an old city you will encounter a lot of cobble stone lined streets and sidewalks. This can be a little jarring for those of us traveling in wheelchairs – just take it slow. The city has made a real effort to make the sidewalks accessible as far as putting in “ramps” at crossings so curbs won’t be an obstacle. The ramps can be hard to spot as they blend in with the street – you sometimes have to be right on top of them before they become visible. I think I ran into all of two curbs that were a problem for my scooter. There was a lot of construction going on in the city so I think that partially contributed to my two little curb problems. But in both cases I was simply able to go around the intersection the “long way” to avoid those curbs.

Shopping and Dining

The shops and restaurants have varying accessibility. Some entrances allow you to just roll right in, others have steps which vary from one or two that are pretty manageable if you can walk a little, to huge stone stairs with no handrail. Many of the cafes offer sidewalk seating, and several have outdoor heaters which makes dinning outside very pleasant even in cooler weather.

If you come across a shop or restaurant that doesn’t look accessible – always ask about accessibility before moving on. We came across a few “hidden” entrances, from back doors to staff entrances – if the people of Copenhagen can find a way to get you inside, they will.

Museums and Galleries

Like shops and restaurants, these are also hit and miss with their levels of accessibility. While most major museums boast they are accessible, there are limits to how accessible they can make a building built in the 1600’s. Again, ask first before deciding if you can or can’t enjoy one of these treasure troves. Some have installed stair lifts and/or ramps, others have yet to acquire the funding for this. Even the museums with limited accessibility are worth going and exploring the parts that are accessible.

I’ll go into more detail about the specifics of my wonderful trip to Copenhagen and the levels of accessibility major sites offer disabled travelers in an upcoming post. I’ll even include how I was able to stick to my diet and exercise routine while traveling along with some other tips and tricks.

Both contain helpful information and pull-out maps, but to really get the most of your research you'll need both.

If you’re considering a trip to Copenhagen – do it! I recommend the books below for all travelers, but especially Copenhagen Encounter for disabled travelers as this book offers information on the accessibility of locations. The entries have a wheelchair symbol next to the locations which are considered accessible, but that doesn’t always mean they are completely accessible. Use it in combination with Top 10 Copenhagen as this book offers more details and lays out, as the title suggests, the best of the best.

Lonely Planet, Copenhagen Encounter, by Michael Booth

Eyewitness Travel, Top 10 Copenhagen, by Antonia Cunningham

Still Busy, so Enjoy Some Quick Links


Wow – I knew it was going to be a busy September, but I‘m loving it! I’ve just returned from DC – more on that later including accessible travel and meeting up with another Pompe patient. I had a hassle free infusion yesterday, so I’m all powered up for my next overseas adventure – again, more on that later.

For now, here is a LINK to the latest Pompe awareness article that has been published by the Dana Foundation.

Also, just for fun, here is a LINK to a foreign article about Pompe. Can anyone translate?

Will blog with you soon!

Busy Times – Quick Update & Photos


I know, I know – I have lots to update you on, but very little time to do it. I will get around to posting everything as soon as time permits.

In the meantime, here is a quick update about one event this past week:

On Tuesday, Ramin and Darryl from Ivanhoe Broadcast News met me at the fitness center to interview me and get some footage of my physical therapy work. They also interviewed Dr. Byrne because they are putting together a piece on Pompe that will be sent to their 250 affiliates nationwide in early October. I’ll keep you posted about when and where it will air, but for now – here are some photos from the shoot.

MDA Telethon Success!

This year’s MDA telethon raised $58,919,838! That is money that will, among other things, go toward research. Remember $0.76 out of every dollar donated directly benefits people like me in one way or another. We already have an amazing treatment for Pompe Disease, now let’s find more treatments for all the other forms of MD and dare I say… a cure!
Here are some photos from the Orlando telethon…

Welcome to Chapman Leonard Studios in Orlando - September 6, 2010.



With Orlando hosts Leslie Gail and Todd Jensen.


The crew working hard behind the scenes.

No set would be complete without Craft Service.

With Sarah from the MDA.

MDA phone bank filled with happy and dedicated volunteers!

Local members of the National Honor Society volunteered their time to help take pledges. Brains and big hearts!

 Thank you everyone – see you next year!

Labor Day Weekend 2010


When I was a kid, Labor Day weekend used to mark the end of summer vacation. A few years ago it meant a much needed long weekend away from work. This year, it takes on a whole new personal meaning to me – it is the largest fundraising weekend for the Muscular Dystrophy Association.

I remember one of those end of summer weekends back in elementary school. I was on vacation with my parents. We were in the hotel room and the Jerry Lewis MDA telethon came on – this is the first time I ever remember watching it. Even as a child, I was amazed that all these people would dedicate so many hours in a row to help all those suffering from Muscular Dystrophy. Several years later, we were visiting my aunt in Florida and her son was working at one of the local telethon broadcasts. I remember being so excited to be on the set of a live television production. Never did I imagine that one day I would be one of Jerry’s Kids – as an adult!

Fast forward to 2010. In January I was diagnosed with a rare form of Muscular Dystrophy called Pompe Disease. Fortunately for me, there is a treatment for this condition – enzyme replacement therapy (ERT). The Muscular Dystrophy Association contributed research which led to the development of my ERT drug, Lumizyme. This Monday I will head down to my local MDA telethon broadcast to be part of it. As a volunteer, a fan, and as someone who has directly benefited from this amazing organization. They helped save my life!

Please take some time this weekend and tune in to your local telethon and please consider donating (no amount is too small) to this great cause.

Happy Labor Day!

Meet n Greet


Today I met with the guys of Marion County ‘s Fire Rescue Spruce Street Station. These guys are truly heroes, not only do they run in to burning buildings and respond to medical emergencies, but they also raise funds for the Muscular Dystrophy Association (MDA). You may have seen firefighters in your area participating in their “Fill the Boot” campaign – and hopefully you helped them fill the boot because every dollar, every dime really does help.

It was such an honor meeting and talking with these heroes today. Having personally benefited from MDA research, I really appreciate their fundraising efforts.

We met with the press and took some photos and then they took me on a tour of the fire house. They are a great bunch of guys who really love what they do and are truly passionate about helping others. I really enjoyed my time there and learned a lot about how the fire house works, they even sounded a test alarm so I could hear and see what they do when a call comes in. I learned a lot, and appreciate even more what our emergency response professionals do for us each and every day!

I was even hooked up with a ‘swag bag’ filled with Marion County Fire Rescue goodies to remember my visit!

Thank you guys for a great day – I loved it!