United Brachial Plexus Network, Inc.

We would like to write an article in Outreach about the issues of the challenges and difficulties of travelling with a bpi. (air travel/driving, whatever)

Either post here or send in your story (nancy@ubpn.org) about any travel tips that you have found that has helped you, or any problem that you think needs to be explored.

UBPN Board of Directors

First Dont take xrap from the airline attendents! UHG, I was so frustrated today, I was finally trying to ask for pre boarding (something I have never done before) and the attendent would not give me the time of day because I didnt have a seat assignment. He would not hear me, just kept telling me to wait until my name gets called. UHG!!!! So I tried again but still nothing so I just went and sat down and waited for a different attendent to go up there. 10 min before the flight is supposed leave, I decided to stop waiting for my name to get called. I obviously didnt get pre boarding so here is where my next tip comes in handy...

Jump in line after a group of nice guys, and when you get to your seat, ask if they will help put your bag up. I had some very nice guys help me lift my suitcase up. They dont even ask questions if thats a fear for some.

Another one would be, no matter what the weather is supposed to be pack a glove/arm warmer of some sort. It was 80's all weekend and my hand was just freezing!

Thats all I can think of right now but I will post more if I think of anything

Hugs,
Amy 21 years old ROBPI from MN


ps. Nancy, drive a little closer

I usually travel with my husband and never asked for early boarding. Last September at the Seattle Airport I requested early boarding. I was asked "Why would you need early boarding?” It is against the law to be asked what your physical disability is but don’t kid yourself people ask. I said I had a brachial plexus injury and was just leaving a support camp for families impacted by this injury. I was told OK... the airport was crowded and one of the "service people" was directing people for boarding. I asked him if early boarding had started and he looked at me and said "what would you need early boarding for?" In a very rude way and he did not allow me to board the flight early. Ralph was off getting water and when he returned and asked what was going on the "gentlemen" quickly turned tail and quickly disappeared out of sight. I could not get his name. Lucky for me Ralph was able to stand behind me and prevent the pushing and shoving. If shoved I could not save myself and would fall.

This past Monday I was flying alone back to NY. I had to stand on a very long security lines. Due to the storms over the weekend many flights to NY were cancelled and this line was much longer than usual. . I was on line for over an hour carrying a small back pack and my pocketbook. I realize now that standing on line and carrying things on my shoulders is no longer possible for me. But I realized it too late. As I approached the rushed Security check point I was faced with yet another challenge and realized I needed a few baskets to place the items required for individual checking. I also needed a place to remove the required items from my backpack other than the floor with people pushing to hurry along. I could not grab as many baskets as I needed and move as quickly as those behind me and the staff expected me to. They kept telling me to move faster and the people behind me were pushing and grabbing baskets in hopes of getting me to move faster. I realize this was a huge physical task for me but I also see where people behind me were getting frustrated because of my clumsy movements. They are not aware of our injury. I could not move as quickly as I would like to and was quite frustrated. I use one hand and my fingers are so messed up from the arthritis I take much longer. I assume they thought it was age not a disability.
I reported to the desk and asked for early boarding they were polite and said they would call. The wheelchairs were brought up and boarded and then the First Class and Elite Passengers and then people with children and those who needed early boarding. As far as I was concerned it was of no real help because the pushing and poking with bags were a bit much.

My pride would not let me accept the airlines wheel chair option to transport me to the Gate. I can walk so why ask for that service? Next time I will swallow my pride and ask for it and get true early boarding. I understand now why people with other issues are forced to accept wheel chair assistance because that is the only ones to get a true early boarding. I use to wonder why some people took wheel chairs to the gate when they seemed to walk so well... NOW I understand. I realize that the arthritis in my spine and knees would allow me to board early but I really need it more for the bpi. We are slower with one hand and need more time to navigate the isle, security checks etc. The people who accept the wheel chair assistance get the help we also need at the Security counter. We need the extra time and often assistance to manage all the trays along with our belongings.

Kath robpi/adult

Oh you gotta love security! UHG!!! I hate being that rushed and having to have extra bins, its such a hassel with pushing people. My lines were also incredibly long and I realized how much lighter I need to pack, my left arm is not tolerating things like it used to. Very sad that its killing my left arm too and I just turned 21.
So Pack light! Security is not fun when they rush us!
Small airports are amazing for that. But then the cost goes up.

Hugs,
Amy 21 years old ROBPI from MN

AIRPORT SECURITY I HATE IT !!!!! I HAD TO TRAVEL WITH BRADNON ALONE IN OCTOBER OF 2001 RIGHT AFTER 9/11. THE SECURITY LINES WERE TERRIBLE LONG ABOUT 3 1/2 HOURS. MY HUBAND COULDN'T STAY, HE HAD TO BE OFF TO WORK, BUT AFTER 3 HOURS OF BRANDON IN THE STROLLER SQUIRMING AND HAVING A FIT, HE FELL ASLEEP. OH FINALLY PEACE, SO I THOUGHT. THEY MADE ME WAKE HIM AND TAKE HIM OUT OF THE STROLLER SO THEY COULD CHECK OUT THE STROLLER. I WAS SO AGGRAVATED.

I HAVE HAD SOME GOOD EXPERIENCES WITH AIRLINE PERSONEL AT THE GATE THOUGH. I REMEMBER ONE TIME I FLEW WITH BRANDON TO CALIFORNIA. HE WAS SO EXAUSTED HE FELL ASLEEP ON MY LAP WAITING TO BOARD. THE GATE PERSONEL APPROACHED ME AND ASKED ME IF I WAS GETTING ON THE FLIGHT TO CHICAGO, I SAID "yes" SHE GRABBED ALL MY BAGS AND SAID" OKAY COME ON, I WILL GET YOU ON THIS PLANE. I PICKED UP BRANDON AND BY THE TIME HE WOKE UP WE WERE HOME. WE WERE THE FIRST ONES ON THE PLANE OTHER THAN THE FLIGHT ATTENDANTS. WHEN WE APPROACHED CHICAGO, A FLIGHT ATTENDANT ASKED"IS YOUR HUSBAND MEETING YOU AT THE GATE ADN I SAID "no" THEY WON'T LET HIM. NEXT THING i KNOW MY HUSBAND WAS WALKING ON THE PLANE AND TOOK BRANDON, BY THIS TIME THE BAGS WERE LIGHT lol. WOW THE POWERS THAT WERE WITH ME THAT DAY !!! I TOLD MY HUSBAND EITHER THEY THOUGHT BRADNON WAS REALLY CUTE OR I JUST LOOKED DOWN RIGHT TIRED !!!!!!

GAYLE

When I travel I like to pack light (especially for carry-ons) and check my bag because it isn't worth the overhead storage bin headache. Also, if you have suggestions for security or a specific problem, TSA has a blog where you can send them feedback and ask about certain procedures, they've used some of the comments to address problems with the system like some airports making up their own rules etc. http://www.tsa.gov/blog/

Also, if I asked for pre-boarding and the attendant was rude, I would absolutely contact the airline, even without the guy's name. That's just not acceptable.

Just my thoughts,
Carrie
26/OBPI

Kath,
I am glad to "hear" you've come to accept asking for wheel chair/escort service when you travel. It is sooooo much easier and hasle free..except when they fail to order ahead for deplane-ing...I always ask the flight atendant to double check before landing.

Thanks too, Carie for that link to tsa.

HUGs,
Carolyn


Message was edited by: Carolyn J

Carolyn
I feel foolish asking for wheel chair because I can walk. I just can't carry anything when I do. I really need more time at check point and getting on and off the plane.

I used the electric cart they have in Newark but needed to use several escalators to get to the palace where my baggage was being off loaded.

I don't make the rules but I guess I have to get one from now on... grrrr.

Kath robpi/adult

Kath,

"but needed to use several escalators to get to the palace where my baggage was being off loaded." ....
This is the exact reason not to be too ashamed to use a wheel chair with escort straight thru the security loong lines; wheel chair users get a nice lonely bare area to unload purses, pockets etc and remove shoes and sit down to get "put ourselves back together".not to mention back ways and elevator use routes to concourses and back thru to baggage carrousels.

Once you do it, you will be amazed.
Bottom line is having OBPI is a Disability that:
1) involves poor balance;
2) high risks for falls[breaking a limb!!]
3) Por dexterity/ability touse arms/hands to unload and reload purses, pockets... and carry-ons if asked.

How many reasons or "accidental falls" is worth our Pride
to ask for this Service?

I love ya' Kath, really really, I do.

HUgs,
Carolyn J
LOBPI/ Not adult yet..69 & counting....


Message was edited by: Carolyn J


Message was edited by: Carolyn J

I always bring a pillow with me when I travel. Weather it be flying or driving. I use the pillow to sleep on of course hehee..but I also use a pillow or blanket to prop my arm up on, especially on long drives. It really helps alleviate the arm from just hanging for such a long period of time.

I also use a heating patch during the cold weather when driving long periods of time. It helps to keep the muscles warmed up and loose.


I also catch myself using the handle in the car a lot. I put my hand up on the handle and let my elbow rest on the window of the car. Not all cars are made this way but it is a great way to help take the strain off the shoulder while driving.

Flying is just a nightmare because you feel cramped in the seats and having to carry the luggage around really puts a lot of strain on the neck & shoulder area. I haven't really found a great way to handle this yet.

Thanks,

Rachel from MT