Friday, April 4, 2008

Travel and social life

Having ALS doesn't mean the end of traveling or one's social life; it does mean adapting. I LOVE to travel. As my ALS has progressed where and how I travel has changed.

Before ALS I went to Europe several times. My grandfather was born and raised in Switzerland so I have a special fondness for that place. My grandfather's family still lives in there. When I have been there I feel like I am home. It just feels right. I have been there three times and wish I could go back but Europe is not handicapped-friendly at all. I am very sad about that.

I have been to the Netherlands twice, concentrating on Amsterdam and the surrounding area. If you have never been to Europe, excluding England, this a great place to get your feet wet. English is the unoffical second language and everyone speaks it. Signs, menus, etc. are all in English and Dutch.

I have traveled all over the US. Since my diagnosis I have gone on some of my dream trips. First we went to the coast of Maine; beautiful scenery and lots and lots of seafood. Then we took an Inland Passage Cruise in Alaska on a 100 passenger boat; icebergs, whales and so much more. Last year we went to New Mexico to see Santa Fe and Georgia O'Keefe's Ghost Ranch among many things.

In Maine I used an ordinary cane, in Alaska I used a quad cane, in New Mexico I used a walker with a seat. Now that I am using a power wheelchair my options are more limited partly because flying feels like too much of a hassle for me. Road trips this year. We have a second home in Door County, WI and will continue to go there.

One of the biggest challenges for handicapped travel is accomodations. Not all "handicapped" rooms are created equal. Too many rooms labeled as handicapped don't have grab bars at the toilet or in the tub or a tub chair. Or the room is too narrow to allow someone using a walker or a wheelchair to manuever. It is very important to be specific as to what you need and have someone at the hotel physically check to see if the room will suit your needs.

A good resource: http://www.access-able.com/tips/

Wednesday, April 2, 2008

Fun, fun, fun

There is nothing more fun than going to another doctor. I have seen five different doctors this year alone. Add surgery and three days in the hospital and you have a laugh riot! Every trip to one of these doctors is a production because I am using a power wheelchair. This means I have to ride the fold-out ramp into our custumized van and get my chair "locked in". Reverse the process when I get to the hospital where all my different specialty clinics are.

Sometimes I have an appointment at two different clinics in the same day, on opposite sides of the immense campus housing the hospital and clinics. It is probably close to a half mile from end to end, involving very long corriders with twists and turns and multiple elevator rides in order to get from building to building (attached to each other). I can zoom from place to place because my power chair has amazing speed. I do have to remember to wait for my husband when I get to one of the "forks in the road" because he will get lost no matter how many times we have done this.

At least when I am at the hospital people are considerate of someone in a wheelchair. They move aside when I need to get through a crowd and make room for me on the elevator. This cannot be said of the general public. Somehow, even though I am in a big power chair, I am invisible. People don't notice that I am trying to get through a crowd. Sometimes they may glance at me then return to talking with each other without moving an inch. My hubby tries to get their attention. When I am finally able to move forward most people don't move enough to let me through without my running over their feet. I am so grateful for those few people who try to help me. They are rare and precious. The rest of "them" are RUDE and INCONSIDERATE to say the least.

Life in a wheelchair is no picnic. There are far too many places I can't go to because they don't have a ramp and/or a wheelchair accessible bathrooms. Not all bathrooms labeled as handicapped can accomodate a wheelchair. Then there is the issue of doors, especially those in bathrooms. How do I push or pull a door open by myself when it is heavy and closes automatically? Unless someone else is coming in or out I struggle with this. It would be funny except it is so difficult.

Ironically my power chair allows me more freedom to go more places. Without my chair I couldn't go out to a restaurant or go shopping for example. Inside my home I can easily go from room to room, hopefully withour nicking the walls or doorways. I can maintain some independence this way.

Being able to maintain some independence is VERY important to me. I have always taken care of myself. ALS steals so much that anything that makes me feel even a little like my former self is precious. I have a hard time relinquishing tasks to someone else.