Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Friday, May 24, 2013

Book It, Then Block It

I have some travel advice as we start into the long weekend when a lot of people travel. David and I do a fair amount of recreational travel, taking weekenders to pursue our railroad photography hobby and see some minor league baseball. When traveling with challenges, planning ahead is important.

I try to remember to pack snacks and bottled water for taking medications and because I know that becoming dehydrated happens faster and is an issue for me. Dehydration can just totally drain me physically and that can definitely dampen the spirit of fun when we travel. I also keep a blanket in the car. I have secondary Raynaud’s with the MS which makes me very sensitive to cold. Even in the summer the air conditioning gets to me and a blanket keeps me comfortable without parboiling my husband in his own sweat. (smile)

Another important thing is a hotel reservation. When we travel I’m in a wheelchair. While I use the walker or “furniture surf” grabbing the familiar stable things in the house sat home, it’s much safer to use the wheelchair when I’m in an unfamiliar place and will be going more than a few feet. When we make a hotel reservation we, of course, always reserve an accessible room. But that’s not enough to ensure that we’ll actually have an accessible room!

Last year when we checked in to the hotel at a conference we attended, my husband and I went to the desk together; he walked up and I rolled up. The clerk at check in addressed both of us, so I was seen. She gave us our keys and we went to the room. The hallway into the bathroom was narrow. There were no grab bars in the bathroom, no hand shower and a low commode; nothing was in compliance with even ADA minimums. We called the front desk to complain and get switched into the room we reserved. She said they were "out of handicap rooms.”

Out of them? We reserved an accessible room, how can they be “out of them?” I reserved with a credit card. If we just didn’t show up they’d charge my card, but they gave up our room anyway? There was still no excuse for not telling us, me sitting right there in a wheelchair, that the room they were checking us into was not accessible.

My research after the fact told me that hotels notoriously overbook accessible rooms. Reserving an accessible room is not a guarantee that you’ll have one. After making a reservation online or when making one on the phone you need to call the actual hotel and say “block the room.” That means they have to have an accessible room for you when you check in.

I don’t think that's okay. It is absolutely necessary, but not okay. Personally, I don’t think it should even be legal to offer to reserve accessible rooms and then not have one at check-in. Something needs to be done to make it impossible for hotels to reserve more rooms that they have. It shouldn’t be difficult to only be able to reserve four accessible rooms a night if you only have four accessible rooms. After four are reserved for any given night, no more show up in the system. Not rocket science or even major computer programming.

But, until a time when that error is fixed, we have to do it for ourselves. Make sure you call the hotel you’ll be staying at and tell them you just made a reservation for an accessible room and you want to block it. Also, while saying “handicap” may not be politically correct, don’t be too proud to use the word. We stopped at a hotel deciding not to drive all the way home one night and asked if they had any accessible rooms available. The clerk said “all of the rooms are accessible.” She must have thought we were asking if they have doors. Saying “wheelchair” made a huge difference in her interpretation. Use words like handicap or wheelchair when reserving rooms in person and when calling to block a room mention that you want to be sure there is a correct room when you arrive. Just because”the system” or some of the people in it aren’t up-to-date, doesn’t mean you should give up any of the things available to you to enjoy traveling.

At another time I’ll talk about the wild differences in quality an actual accessibility in different hotels and different places.

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