A roll in the woods

This story first appeared in the Information Point newsletter Our World in 2013, when Sarah Foye told The Information Point about a visit to the Appalachian Trail.

The Foye family.

My son, AJ, age 12, has centronuclear myopathy caused by a mutation in the Titin gene. AJ was recently required to read a non-fiction book as part of his language arts class in 6th grade. He chose the book, ‘A Walk in the Woods’ by Bill Bryson. As a result of AJ’s condition, he uses a wheelchair for long distances as he tires easily and since holding books for long periods of reading can tire AJ, he often chooses to listen to the audio version. One benefit of him listening to books instead of reading them is that we can enjoy them together.

‘A Walk in the Woods’ is a hilarious tale of one man’s attempt to walk the Appalachian Trail. The Appalachian Trail is one of the longest continuously marked footpaths in the world, measuring roughly 2,180 miles in length. The Trail is located in the United States goes through fourteen states along the crests and valleys of the Appalachian mountain range from the southern terminus at Springer Mountain, Georgia, to the Trail’s northern terminus at Katahdin, Maine.

This amusing story opened up a world not generally revealed to people with physical disabilities and after learning about the Appalachian Trail through the book, we realized that a portion of it runs through our home state of New Jersey. After some research, we also discovered that a portion of the New Jersey Appalachian Trail has a wheelchair accessible boardwalk, so one beautiful fall afternoon we took a drive to that corner of our state and discovered a glimpse of the world described by Bill Bryson. We joked with people who passed us by that we pretty worn out after traveling all the way up from Georgia.

We discovered also that there are other sections of the Appalachian Trail that are wheelchair accessible, such as the Appalachian Trail on Bear Mountain and the Appalachian Trail in Vermont. Also that the United States National Park Service makes an effort to make many national parks wheelchair accessible.

So, that’s one thing AJ crossed off his bucket list: hiking on the Appalachian Trail. With some advanced research, many trails may be open to you, too. Happy trails.

New Zealand adventurer

This story first appeared in the Information Point newsletter Our World in 2012 when Kelly Mclean who lives in Adelaide, South Australia and is diagnosed with recessive centronuclear myopathy, told The Information Point about a cruise around New Zealand. 

Kelly with new friends.

Since I was young I have dreamt of going on a cruise. I always thought it looked a luxurious, fun, relaxing, adventure and in March, my dream came true when I embarked on a 13 night cruise of New Zealand on the Sun Princess with my friend Jane.

We departed from Sydney and visited Bay of Islands, Auckland, Mount Maunganui near Tauranga, Napier, Wellington including Mount Victoria lookout, Dunedin and Milford Sound before returning to Sydney.

Jane and I travelled with Princess Cruises. We were told they have slighly newer ships and an extra star rating on their main competitor P&O. Also, they seemed to offer more options for travel throughout the year, when we needed to travel. P&O is also a young crowd, in their 20’s – they are into partying and drinking. We are in our 30’s and are more likely to be reading or doing a crossword. Dags, I know.

The ship was big and we could explore floors 5 to 14. The facilities on board included spa, bars, dining rooms, 3-level atrium including shops, bars, entertainment areas, Princess theatre, Vista lounge, buffet, pool / spas, kids club, night club, casino and an art gallery. My favourite place on the boat was The Atrium – it was visually spectacular and had everything you needed. It was a place to stop for a drink and listen to some live piano or orchestra, a place to shop and the place they did demonstrations such as bar tricks and animal towel folding. It was the centre of the boat, so you got to walk through it to get to either end of the ship.

The first few days, as we crossed the Tasman Sea (open water) was a bit rough and we needed a few sea sick tablets. I did better than Jane but we both did better than many of the others we spoke to, even people who have cruised before. However, once you got used to the swell and the fact that you slowly sway all the time, it is quiet relaxing, like being rocked as a baby.

The boat was accessible but there were a limited number of wheelchair accessible rooms with wide doors and an accessible bathroom, so it is important to book early. The only limitation was getting on the deck. Each door has ramps, but I bottomed out at most because my scooter is close to the ground. There was one automatic door off the buffet that I used to access deck 14 but in my opinion, this was the best deck anyway. Also, I couldn’t disembark at two of the stops – Bay of Islands and Akaroa. The ship stayed in deep water and passengers had to transfer to a smaller boat and be taxied in. These boats are not accessible. This didn’t bother me though as it gave Jane and I a break from each other and me some time to sleep. It was an exhausting trip – so much to do on and off the ship.

The trip was my first, independent of my parents, so that was pretty special. My first look at the ship made me feel like a kid in a candy store, it was so impressive. I loved the ‘family’ feel on the ship. Everyone said ‘hi’ in the corridors, chatted in the lift and was happy to include you in their teams at afternoon quiz and other times. We had some great chats at the dining table – we had set seats and set time for tea so built up a good friendship with our group. We swapped email addresses and have already been in contact with each other. Also I loved reconnecting with Jane; we live 7 hours from one another now but once lived together and studied together for three years.

I loved all of New Zealand and the ship experience. Everywhere we visited had its unique and beautiful features. I especially loved Milford Sound which was overwhelmingly beautiful, a ‘pinch me now’ place. We were extremely lucky with the weather, getting sunshine when they usually have rain.

I would absolutely recommend a cruise to others and believe it is the most wheelchair accessible way to travel. Transport, accommodation, food and entertainment are all in one place and there is no need for packing, unpacking or setting up equipment over and over. You are also dropped easily onshore for day adventures. The staff are so helpful and are setup to help people with mobility issues to board and disembark. Seamless.

I now have the cruise bug and would definitely travel this way in future. We hadn’t even gotten of the ship and Jane asked ‘When is our next cruise Kelly?’ So, in a few years, we will look into going the Pacific Islands we think. The sky is the limit now.