Trip to NYC

[technovicki]

I recently took a trip to New York city and had a blast. Mind you as some of you may know airports can be a pain when you wear braces and can't remove your shoes. The TSA are only doing their jobs and for the most part are sensitive to the situation. I traveled by myself and met some friends who live there (I'm from Texas). This was my second visit to the city and while I enjoy visiting it is not somewhere I would like to live as you can imagine its not the most accessible city. Overall I had a great time...did some walking but also driving (my good friend would drop me off while he founding a parking spot) and cabs. I learned from my first trip that trucking through the city wasn't a good idea as my ankles were pretty swollen at the end of day two. It had been a few years since I first visited and remember thinking at the time that I should take the opportunity while I could still walk. Unfortunately that was a negative view and shouldn't have assumed when I would or would not be able to walk.

I have traveled quite a bit and have visited other major cities such as Chicago, Los Angeles, New Orleans, San Francisco, Maui (which I have another trip planned in June) and other cities that are not as exciting for work. Just thought I'd share my story about traveling and how its good to get out, even out on your own if you can (just requires a little more planning). I honestly believe that keeping in shape has a lot to do with me being able to stay this active too. I would definitely recommend cycling and strength training to anyone capable. I even live on the 2nd floor of my own apartment. Its not the easiest but I feel more comfortable and while I don't particularly enjoy the stairs on grocery day its just a little extra work on other days. And as in most of my posts I am truly grateful to my parents who raised me to be independent and let me try anything I wanted to within reason.

[kali]

you sound so content and happy, and accept life as it is...good for you. I pray my son will be like you when he grows up.

[Barb]

Very cool! I absolutely hate the whole TSA checks dealing with bracing and chairs. UGH!

[printemps]

Hey good for you , I have not flown since all these new rules went into effect so have not had to deal w/ it myself . I just have the afos to deal with so I dont imagine it would be a big deal . I understand the importance of being active - swimming , riding a bike all good stuff I did alot of these growing up and this has helped keep me as mobile as I am .I hope you had a great trip .

[Dodger67]

I've never taken an airline flight longer than 2 hours.
Is it at all possible during longer flights for a wheelchair user to access the toilets?
Or is my only option to get a catheter and leg-bag and hope I don't burst it!?!?

[angel]

I flew for the first time last year when i went to the national SB confrence in louisville Ky. I found it to be pretty easy to get through security as all they had to do for me was pat me down (and they leave no stone unturned!!) I usually walk with crutches (no braces) but i had to take my chair as i never would have made it the length of the airport. I went with my son's care coordnator from shriners hospital. She is relativly new to her job she has been there about a year and i think that was the first time she had traveled with someone in a wheelchair. She was besider herself when the help we needed was not readily available. I finally had to tell her to chill that it would be ok we would get there and i didn't need the help anyway. She was just outraged that things were not easier. I am used to it so i just took it in stride.

I love to travel. My husband and i went to D.C. last week. We went to see Stephen King at the Folger Shakespere Library. It was also a business trip for him as well. When he left he said order food to the room i worry about you going out on your own in this city. I guess i can see his concern i might look like a pretty easy target if someone wanted to harm me. They would be wrong but i can see where they would think that. I wanted to go outside and enjoy the nice weather so i went out the front and sat in my chair. I saw a huge garbage can with metal railing around it. I just casually held on to that figuring if anyone wants to take me they will have to be able to carry me and the garbage can lol.

I have never been one to worry about stuff like that. Not that i don't know what can happen i do. Plus i think my husband's job makes him a bit more paranoid sometimes about things that could happen. Before i married him i would jump in my car some weekends and just go wherever it took me. My mom didn't like it much but she never told me not to just to watch out.

Sorry i know this is rambling lol but i had to tell you this about NYC. We took our boys there last summer. We thought we would surprise them and take them to see the statue of liberty. We were all excited waiting to see their reaction. They didn't seem that impressed. In fact we heard it looks bigger in the movies. LOL i was like that is it i give up!! If you are not impressed by that i can't imagine anything you would be impressed by lol.


Angel

[Michelle]

Hi Angel! I live in Louisville, KY and my son Jack is 3 months old with SB and I was wondering, is the SB national meeting in a different place every year? Do you know when and where it is this year? I hope you enjoyed Louisville.

Take Care!

[angel]

Hi I did enjoy louisville. It is in a different place every year. This year it is in Tuscon Arizona June 25-28. I am pretty sure of those dates. My plane ticket was bought over a month ago. Most of the people that go are there every year. Last year was my first year to go. My son has SB occulta, i have SB myleo and i go with shriner's hospital which is where my son is a patient. I head up the group for parents who's children have SB and that is why they are sending me there. I had a good time there last year. I had some issues with some things i heard there but that is a whole other story. I am sure you can still register if you are interested!!!

Angel

[eng188]

Seems like this thread is going in all sorts of different dirctions now, but as a T-2 incomplete SB myelo (using crutches/AFOs), I'll give props to the idea that travel is a great thing, though it can be challenging at times.

I am from California, but nowadays live in Pennsylvania (for life coaching with the SBA-WP). I have also lived in Vermont and North Carolina. My parents live immediately north of San Diego. Ergo, a couple times a yar, I fly allllll the way back there. I like to fly, and like to travel in general. TSA has always done their best with me. Always courteous, if somewhat understaffed at times. ALWAYS accomodating.

I will say that lately, I have suffered symptoms of tethering, which include increased hardship maintaining continence. This reared its ugly head when I, too, went on a trip to DC on Greyhound. All morning, I felt as if my bowel or bladder was on the verge of an attack on me. Because of all that, I wound up going to several metro rail stations that I hadn't planned on. Metro rail is getting a bit frustrating, since, every so often, the bathrooms are shut for repainting. I experienced that at a stop or two this time. It makes you really think about how to accomodate yourself. I am pledging to be more aware of landmarks at any station I might use that might have restrooms.

That's the thing, I think. You need to do a post-mortem on any trip you do. Really think hard about difficulties you experienced and think about how to avoid such problems. Learning is a good thing in the end, and travelling, to me, is a blast and a way to have a change of pace.

I didn't do anything touristy (Smithsonian, etc.), but I wrapped up my night quite well at the DC United - Pachuca soccer match at RFK that I was there for anyway.

Just some thoughts about travel. Travel is a great hobby, even for those of us who need to think ahead with our lives. No----not "even"..."especially".

[Dodger67]

But can a wheelchair user pee on a plane?

[StrictNon-Conformist]

Oh, absolutely: but it won't likely encourage friendships amongst your fellow passengers and flight crew! :D

On a non-Steve Martin-esk sort of answer, all the planes I've been on (737 and the ilk for size) aren't nearly big enough from my experience to come close to getting even a small wheelchair up and down an aisle, and the closets they have the nerve to call bathrooms don't seem nearly big enough except for 2D midgets. I'm not wheelchair-bound and haven't personally traveled with someone that is, and should I degrade to that state for one reason or another, I suspect I'll hate the whole modern airplane experience that much more.

But can a wheelchair user pee on a plane?

[mommy2cnj]

This is pretty cool, speaking on the topic of travel. Having both children younger (for the moment), I'd never really thought of the situation(s) that one could encounter.

[eng188]

Heck, I'm still learning and I'm 32 with SB. I suppose we biffs have a different "aging" process.

[Spokie]

Had some interesting moments even before getting to the plane. Funny how some people think that disabled parking bays are only for disabled drivers, and not disabled passengers. The looks I get when I park the car and get out WITHOUT A WHEELCHAIR!!

My son's also very tickle-ish - so we had quite a number of laughs at the security checkpoints with the patting-downs... :)

[technovicki]

yeah traveling is fun! you really start getting better at thinking ahead and become better and better what you need and to expect. i wear afo's and since i can't take off my shoes to cross through the metal detector i always have to get that extra dose of security. but as some of the previous posts stated TSA is usually pretty courteous. they have to swab your braces, shoes and sometimes your palms and run them through some chemical machine. this is a much better option than the process in beginning where they actually had me take off my shoes (not my braces) and scan them...they dont do that now which is nice! and they will pat and wand you down so you have to get there a little early knowing that it will happen. i also have OCD so its a little tough :)

i have never been in a wheelchair on a plane but i can't imagine one really fitting. i know the airports use one and take passengers down the jet way and onto the plane. this was the first time i ever had to use the bathroom on the plane (again OCD dread) and while the door had a handicap sign on it i can't imagine anyone with a wheelchair getting in there...really sucks...i'm 5' 1" and it was tough for me.

BUT...I did buy my ticket to Maui for June...super-stoked...now if i can find some non-rubber shoes for the water...i missed out on it the last time but am determined to find a way this time. although my friends and i will be doing an ATV tour (4-wheelin) ...now thats a fun way to see the island and not have to do a lot of walking!!!!!!

[angel]

I had to take my shoes off. I was in my chair so that didn't matter so much because my feet didn't touch the ground. I used my crutches to get on the plane and just sat in a regular seat. I almost wished i had asked for a booster seat though because i am so short i could barely see out the window!!!
The one thing that made me nervous was putting my wheelchair in luggage or cargo whatever they call it. I was afraid it would get lost and i need it for long distances. I could walk if i had to but i would be so beat by the time i got to the hotel i wouldn't have been able to have much fun.
Well i am off to take my son to an orto appointment at shriners (hoping for a good report!!!!!)

Angel