Month: October 2010

Accessible Travel: Copenhagen Part 2

 

As promised in Copenhagen Part 1, here is more information about accessible travel in Denmark’s capital.

Nationalmuseet

This exquisite building was formerly a palace, but now houses extensive collections devoted to Denmark’s history. For a building that is several hundred years old, it is surprisingly very accessible. The museum has small lifts that will carry you from floor to floor, as well as stair lifts at each set of stairs that separate the rooms. Both types of lifts are very small and are designed for manual wheelchairs or very small mobility scooters. If you have a larger scooter you won’t be able to explore the entire museum and should borrow a manual wheelchair from the museum. Just ask the staff at the entrance near the coat check area.

Rosenborg Slot & Kongens Have

This 16th century Renaissance castle houses the crown jewels. The castle and grounds are beautiful, but the castle is not accessible at all. To tour this site you need to be very independently mobile, enough to negotiate very old and uneven staircases and cobblestone paths. The surrounding grounds are completely accessible, so roll around and enjoy the picturesque setting.

Tivoli Gardens

This amusement park was built in 1843 and takes some of the credit for inspiring Walt Disney’s launch into theme park world domination. Like most theme parks the accessibility of Tivoli will vary from person to person depending on how well you can transfer in and out of the ride vehicles. They do have ramps and lifts installed to get you to the loading platforms, and the grounds themselves, shops, and restaurants are almost completely accessible. Occasionally you may have to ask an employee about alternative entrances for restaurants and shops, and they will do their very best to accommodate you. We dined at Groften (one of the many, many, many restaurants inside the park) and the manager took us around to the side entrance to dine on the patio so I could avoid the stairs. We couldn’t have asked for better service or a better meal! If you find yourself at Tivoli I highly recommend trying Groften for some delicious Danish food.

Amalienborg

This complex of palace buildings has been home to the royal family since 1794. You can tour parts of the palace that host gatherings, but only if you can climb up and down a long set of stairs. While the palace itself may not be accessible, the center of the buildings offers a brilliant view for the changing of the guards ceremony.

Ny Carlsberg Glyptotek

Even though this building claims to be recently renovated, the renovations didn’t seem to include adding stair lifts like the ones found at Nationalmuseet. There are stairs to enter through the main entrance and a lift can be found around the corner to the left of the entrance. However, the lift only works about half of the time. Have someone you are traveling with ask the museum staff for assistance and they will have you enter through the staff entrance which is located around the corner to the right. This is actually pretty neat, as you get to enter through huge wooden doors and travel through some of the staging area, and maybe you’ll even catch a glimpse of pieces not on display. Once inside, you’ll find that some areas of the museum are accessible and given the size of the museum’s collection of fine art it is worth exploring these areas. There is a lift which will take you to some of the floors, but once there you’ll only be able to view some of the galleries before running into stairs. Because so much of this museum is not accessible, visit on a Sunday when admission is free.

Stroget

Copenhagen’s pedestrian shopping area is filled with one of kind as well as chain shops and restaurants. All 5 linked pedestrian streets that make up this area are accessible, but the shops and restaurants vary in their accessibility. Some have installed ramps to allow guests on wheels to enter and some have level entrances, but several have 2-3 steps you will have to climb in order to enter. The steps vary in size and height and often no handrail is available. There are enough accessible shops and restaurants to make this area worth your time.

Carlsberg Museum and Visitor Centre

Brewery tours are always interesting, they almost always include high tech multi-media type experiences which lead to a beer tasting which is included in your admission. The tour is fairly accessible, but the museum is housed in the original brewery which was built in 1847. Two of the rooms on the tour require you to climb up and down stairs, but you can just skip these two areas as there is still plenty of accessible areas to explore. When starting your brewery experience you might want to ask the staff if you can enter the first part through the exit near the stables, otherwise you’ll have to climb down two very, very large steps at the entrance. You’ll also need to have a member of the staff open up the elevator that takes you to the café and bar at the end of the tour.

The people of Copenhagen have made great strides in making their city accessible. You will run into a few obstacles, but if you do your research and contact the sites you plan to visit ahead of time you’ll be fine. There is so much you CAN see and do in Copenhagen without ever having to leave your wheelchair you’ll never miss the things that are not yet accessible.

Recipe: Low Carb Hot Chocolate

 

This is all you need!

I knew I would have to give certain things up as part of my high protein, low carb lifestyle. Most of what I’ve said good-bye to, I don’t miss. I was never that big of a fan of rice or bread or pasta, so eliminating those from my diet wasn’t difficult. But, I was not looking forward to life without hot chocolate. I vowed to myself that I would come up with a low carb recipe for it – and I have!

My recent trip to Copenhagen inspired my culinary masterpiece, ok so masterpiece might be a bit of a stretch – we are just talking about a hot beverage here. In Copenhagen, they pair just about everything with some sort of chocolate beverage. One shop we went to held up two pieces of chocolate to choose from, one milk and one dark. After you make your choice (dark of course) they place it in a cup, add hot milk and stir. They actually call it warm chocolate or drinking chocolate – whatever its called, it is delicious!

I came home and tinkered around in the kitchen until I came up with a simple, low carb recipe that would help me survive the cold winter months here in Florida. If you don’t like dark chocolate, you probably won’t like my version of European Drinking Chocolate, but you can use it as a starting point and then fiddle around in your kitchen to come up with something that better suits your taste.

Ingredients:

  • Unsweetened chocolate almond milk
  • Twinings Luxury Drinking Chocolate
  • Whipped cream

Fill your mug with almond milk (leaving room for chocolate to be added) and microwave it for 2 minutes

Add 3-4 teaspoons of Twinings Luxury Drinking Chocolate

Top off with whipped cream

Stir and enjoy! Please note that because this is made with real chocolate, you may have to stir occasionally as you drink.

More “me” Progress

 
 

 

Yeah for Lumizyme! The stuff works!

I had another physical therapy evaluation this week and the news was once again promising. I have continued to improve and showed increased strength in every muscle group – some more than others which is totally understandable since some are weaker than others to start with.

This week we’re going to start “test driving” manual wheelchairs, I hope to be able to use one full time before my next overseas adventure. It’s a goal, but if it is realistic or not – only time will tell. It is somewhat difficult to set goals with Pompe because everything is so new and undocumented with the availability of Lumizyme. In the past, someone with Muscular Dystrophy could expect to grow weaker and weaker as the disease progressed. But now, with a treatment available and a fierce diet and exercise routine to follow – no one really knows what the future holds for me. I can promise you this – I will keep fighting!

I’m also sleeping better, I can actually sleep lying flat now and don’t have to worry about waking up with a headache. That has not been something I’ve been able to do for several years. The pain is almost entirely gone. I still get flare ups every so often, but they are only in my legs and are much less severe than they were a year ago. The only pain killer I take is Aleve, and I’ve only had to take it a couple of times since starting my Lumizyme infusions.

Thanks to Lumizyme, diet, and exercise I’m slowing taking my life back from Pompe. Some days are harder than others, but for the most part my new lifestyle works for me and is helping me fight Pompe.

Update on Brad

 

Back in August, I introduced you to my fellow Pompe warrior, Brad Crittenden. Recently, Brad shared some very exciting and encouraging news with me and has agreed to let me publish an update about the progress he has made since starting enzyme replacement therapy (ERT).

Because Pompe can attack the diaphragm and other muscles needed for breathing, patients undergo pretty regular pulmonary function tests so the doctors can monitor just how low our pulmonary function is getting and to let us know when we’ll need to go on a ventilator or other assisted breathing device. Or at least that is how the story went in the past, before ERT was available to us. Now, Pompe patients are tearing up the old progression path of Muscular Dystrophy and paving a new path. Some of us are getting better and stronger! Brad is one of those people who is showing improvement after only a few treatments!

Here, in his own words, is Brad’s update:

A funny thing happened the other day. I had a pulmonary function test that was actually better than the previous one! I honestly can’t remember the last time that happened. In the world of Pompe, we get used to the disease chipping away at us. This time, that didn’t happen. What changed, you might ask? Three months of enzyme replacement therapy!

I had been eagerly waiting for this test. Each time I went in for my infusion I was feeling a little bit better. The last couple times I was able to recline in the chair and still breathe, which I couldn’t do before. Even my nurse has noticed that my oxygen is better than when I first started ERT.

I arrived early for the test. Okay, I was a lot early but I was feeling pretty good about this! First was my volume. I knew as soon as I saw the first number that it was going to be a good day. I was up 7% and I’m thinking, “Holy Smokes, that’s even better than I was hoping!” It’s not as good as I was last fall, but sure better than 3 months ago. Then we did my inhaling and exhaling pressures. I was blown away (pun intended!). One was the same as 18 months ago and the other was even better.

We had one more test, my volume lying down. This is the one that I really don’t like because I just can’t breathe enough. Last time it was only 27%. Since I use a bi-pap when I sleep, I had no idea what to expect. So, I’m flat on my back and I do the first blow. The tech asks me if I’d like to take a break between the three reps and my inside voice said, “Heck no, you’re not getting me down here again!” My outside voice said, “I’m okay, I can do it”. So I do it two more times and sit up with anticipation. I got 39%! Now if I were in college, 39% would not look so good. To me though, it was like a home run! That means that my lung volume when lying down is almost half again what it was three months ago. That seems like pretty good news.

Brad's PFT test results = ERT works!

So now I’m confused. I thought the idea of these tests was for us to be depressed after doing them. I mean, I’ve been practicing that each time and now this happens. I’m going to have to change my whole outlook, but, I think I’m willing to do that. Love that the graph looks kinda like a hockey stick!

Thank you so much for sharing this inspiring news with us! I hope Brad’s progress gives you that extra bit of hope you’re looking for to keep fighting! The stuff (ERT) works! It really does!