My journey of pre-boarding with MS, or not…

My journey of pre-boarding with MS, or not…

Reader FavoriteI recently traveled for work, to sin city: Las Vegas, Nevada. On the journey over, I struggled with my MS, emotionally, and found myself confronted with making decisions that could have made my flight easier and more comfortable. My conflict? To ask for help or not.

This notion of asking for help is something I really, really struggle with. If I ask for assistance, do I essentially give up a part of my independence? Or, do I ask for little bits of help along the way, to conserve my energy for the fun stuff? Yes, to the second question. But it’s not always that easy.

For me, bringing my MS to the airport terminal can be stressful. I don’t look like I have MS, whatever that looks like. So if I end up asking for help at the gate, strangers seated around me would surely look up and think, “Well, what does she need pre-boarding for? She looks normal. I’ll bet she’s perfectly healthy. She’s probably lying just to board early.” It’s not like I have a card in my wallet or a sign on my back that identifies me as a disabled person, to make it more legit.

So it was during my trip to Vegas. As I sat in waiting near my gate, I contemplated asking for a pre-boarding pass. I was tired, felt weak and my legs were burning. Yet, I struggled with the consequences. Fellow travelers would likely glare up at me with those judging eyes and I imagined saying to them, “I’m not a cheater, I am not trying to edge my way to the front, to board first. I would love to avoid this, grab a seat, shove my stuff in the overhead compartment and settle in. Be normal, just like everybody else. I’m not a poser.” So, not wanting to deal, I elected no pass for this flight.

As we waited for boarding, I wondered, as I often do, “If these strangers bustling around me knew that I struggled, they will be more kind, right? They might give me a little bit more room as I stand in line with my MS. What if I get vertigo while waiting to board? Will these fine folks hold me up if I ask? Or, will they just look at each other, roll their eyes and say to themselves, ‘OMG. She’s drunk and it’s not even 9 o’clock in the morning.’”

Announcement. “Passengers with a pre-boarding pass and those needing extra time may now board.”

“That’s me”, I thought. Yet, I didn’t go up. [Insert excuse here] I had already missed my opportunity to grab the pre-boarding, I-have-a-disability blue pass. I was stuck waiting in line with my MS. The crowd drew closer around me as their bodies and bags squished me in between. My breath quickened. I’m suddenly reminded that I have claustrophobia.

Announcement. “Passengers in Group B, rows 1-30, may now board.”

I stepped towards the gate and began boarding. Feeling a bit shaky, I coached myself, “You got this, Christie, you’ve done this a million times.” My wonky legs were challenged on the jet way; it was nearly impossible to figure out what caused the bounciness, the ramp or my MS! “Don’t fall”, I reminded myself, “Look down while entering the plane, watch your step, hold onto the door and step into the plane. Say hello to the crew, make a quick turn to the right, don’t bang your bag into the heads of seated passengers. Sorry! Keep your eyes on the floor, watch where you step. Good grief. I should have pre-boarded.”

As I navigated the jet plane’s aisle, I certainly wondered if the flight crew and passengers thought I was drinking that morning. I wanted to tell them, “That wobble you just saw? MS, not a double shot of vodka. That trip you saw when I entered the air-chute? MS, no booze for this girl.” All of this niggling was lot of “stuff” to carry on-board. And, I even checked my baggage! You’d think that would have been a huge load off, right? Not so much…

So, finally secure in my seat, I looked up at the passengers boarding as they found their seats. “Uh-oh”, I saw a familiar face, someone I know but someone who doesn’t know that I just brought my MS on board. Congratulating myself, I thought, “Good thing I didn’t pre-board, my secret would have been out.” You see, that someone was a former colleague and I’m not out at work with my diagnosis and it was really a good thing I didn’t pre-board. I would have had a lot of explaining to do. “Good grief!”

“Chill, relax”, I tell myself. “You’re seated, your belongings are safely stowed away, the gentle hum of the jet plane engines is making you sleepy” A few deep breaths and I dozed off…well, not really. I started niggling about my flight home. “Should I ask for help or not?”

The pilot then announced that it would be smooth flight to Vegas. Ha! Smooth for whom?!

How about you? What have your travel experiences been like since your diagnosis? I’d love to hear your stories or your tips on traveling with MS.

Travel safely!

 

Christie

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (59)
  • akaiser56
    1 year ago

    When you go to the airport you should request curbside wheelchair. They wisk you through security and bring you right to the gate and you should request preboarding.You don’t need permission or acceptance from other travelers. This is in your head, change your attitude. There is nothing shameful in getting some extra help and consideration. It’s hard enough dealing with MS. Give yourself a break ,don’t be so hard on yourself. And to hell with what other people think. Shame on them, let them walk in your shoes.

  • misstiny
    1 year ago

    I don’t have MS but I do have Transverse Myelitis a distant cousin. I do pre-board. My reason is so I don’t hold up others. I don care if I look drunk I just say “these human bodies are so hard to get used to”, if I falter. If people are interested I will explain. I’m a friendly outgoing person, so please ask. I get an aisle seat for tiny bit more of leg room. A few times I’ve had to break in line to use a bath room. I would rather be thought odd then poop in my pants. Now that my hair is turning silver hopefully I’ll just be thought of as a crazy old lady. Works for me! Hugs to all.

  • DonnaFA moderator
    1 year ago

    Hi Misstiny, thanks for being here and sharing your honesty, your humor, and most importantly, your comfort in surmounting discomfort. I don’t have MS, but I do have vertigo and I may absolutely steal your “human bodies” line for those times I start spinning like a pinwheel:) We’re glad you’re part of the community! – Warmly, Donna (MultipleSclerosis.net team)

  • Dory
    1 year ago

    I have a very hard time asking for help. I don’t look like I have MS, but the falls, fatigue, and other things always have a way to remind me, even though I blame my falls on my natural gracefulness.

    After one of my falls, this one I sprained my ankle doing, I had to fly to Arizona, so I had to ask for help. I realized how much it helped in my overall trip. Ever sense, I have come to terms that I need to get assistance to the gate which also gets me preboarding.

    Now, swallowing my pride once again, I am working on my disability paperwork.

  • Julie
    1 year ago

    One of the toughest things I have had to learn for the past 17 years is that there are times I need to ask for help. It still chaps my hide when I do it but there are times it is necessary. Flying is one of them. Going from gate to gate is impossible if I want to have any ability to walk for the rest of the day. So I ask to be taken. I get to ride on one of those carts that come flying up behind people and you better watch out!

    Once at the gate you need to be they automatically put you in the pre-boarding line. I’ve had to learn to ignore what everyone else is thinking of me, ignore the looks the judging glances. These people aren’t going to have to figure out how I get thru the rest of the day. I ask this of all MS’ers. Please think of yourself first. You are not responsible for what others think. It’s their problem, not yours.

  • Sharon
    1 year ago

    I’m grateful you posted this story. I didn’t know, first off, that there’s a pre-boarding pass for people like you and me with ME. I too struggle with asking for help and letting other people know and see me as a person with MS. I travel infrequently, but, always feel tired and the symptoms of this disease, while invisible to others around us, always inevitably appear and take over with travel. I remember feeling so weak, dizzy, and wobbly on boarding once, and ended up fainting in my seat as we were in flight shortly after take-off. I managed to get by the 2 passengers in the row and make it back to an empty seat so I could lie down… after the flight attendant asked if I wanted the flight to turn around! Was I ever embarrassed, and replied quickly with a “no please, no!” If I had known about the pre boarding pass for ME, I would have thought about it and wished I had the guts to use it… but, I too would have felt all eyes on me, questioning my unseemly attached illness invisible to all, and passed on using it too. Why do we feel this way? Our disease is very real and so frustratingly hard to accept. Now, however, I know about this, and next time I’m not feeling well while travelling alone… I hope to have the courage to use this very useful and helpful tool.

  • Lina
    1 year ago

    There is nothing to be embarrassed about No one will understand or know what you go through on a daily basis. If you don’t feel well do anything to make your life easier without caring about what others might say or think. You don’t owe the world enough to suffer through your symptoms & they don’t and won’t help in any way. I understand how you feel I (having MS) have been there. I have not traveled yet since I was diagnosed via plane except once. I had no troubles then and I was traveling with family but this story made me realize that it could happen any given time. If it ever does I will worry about me without caring of what others think. I wish we lived in a better world but we have to deal with what we have. Nobody but us MSers really understand each other more than anyone else.

  • Spratt
    1 year ago

    I just had this experience last week. The gate seemed like miles away from the check-in counter and my biggest decision was whether to ask for a wheel chair – that brings on a whole other set of questions. I decided against wheelchair or boarding early, although I had already overdone it and I knew I’d be paying for it later. This will probably be my last time to travel alone without that assistance. As it turned out, I had the entire row to myself, which never happens any more, so I was able to rest my legs on the other two seats for the entire flight! Blessed indeed.

  • Toledo34287
    1 year ago

    Traveling is the most tiring. The glaring lights, dodging people, holding bags. If you opt for a wheelchair you still get looks.

    But…….you can get through the line quicker with a wheelchair. I’ve met some pretty interesting transporters.

  • KyleW
    1 year ago

    I kinda cheat. I always buy “more space” seats.They typically include preboarding. I get to on first and don’t have to explain why!

  • Christie Germans author
    5 years ago

    @dianna lyn – sounds like you’ve got the travel routine down! I think your suggestions are great, especially traveling with the cane. Take care and hope you’re feeling okay these days. Best, Christie

  • Dianna lyn
    5 years ago

    I have to travel alot to see my grandchildren and I look at the Airport as a challenge. I have traveled from east coast to Hawaii several times and it’s about a 10-13 hour flights. Exercise..is the key..but I don’t like to sit for very long unless I am sleeping or reading. I have always been athletic all my life. I am almost 50..i have been living with MS for a very long time, I watch my diet .i eat healthy .don’t go overboard.But, when I travel, I use the cane, monkey no see, monkey no speak, monkey no hear..i like my cane..so does TSA…

  • Lina
    1 year ago

    This comment is very helpful as I do plan to travel internationally on long hour flights. I myself can’t sit for long periods of time so it’s good to know you can get up and move around while on flight. TY for the insight

  • Dianna lyn
    5 years ago

    The hardest part is changing planes, so I always make sure, I take direct flights, no changing planes…i don’t fly if I have to change planes.

  • lois
    5 years ago

    Christie, Your story is so familiar to me! The last time I took a plane trip, I decided to ask for pre-boarding assistance when I checked in. The long walk to the terminal had always been so exhausting, and a bit scary because I looked normal, but could not hurry along like those around me, who at times just about ran me down. Also, exhaustion tends to make me prone to spatial and impaired “executive thinking”, just enough disorientation that I appear, or at least fear that I appear, just a bit “slow” or intoxicated…
    I’ve always resisted putting myself in the position of being helped, vulnerable. I suspect being a retired nurse is a part of this. I refuse to use motorized chairs available at grocery and department stores for the same reason, instead using the shopping cart for balance and to lean on when I get tired. I am usually exhausted by the time I get home.
    This time I “fessed up” at check in, and immediately and without fuss they called a staff person who appeared with a wheelchair to take me to the gate. Inside I was panic-stricken the moment I sat down in the wheelchair. My worst fear! I can’t explain it really. While it was wonderful to not have to struggle to the gate, ,my inner dialogue (and maybe some verbal muttering) was about why I didn’t really need help so bad as someone else and feeling guilty and also in some way more visible and more invisible than normal as she whizzed me past and through the crowds that normally whizzed by me. Somehow my identity had changed, my view of myself.
    My grandmother had MS, and maybe this terrified me because she had become bedridden and died bedridden at an age not too distant from my own…..
    I didn’t even have to stow my own carry on, just get to my seat from the aisle….my inner voice chastising me that I could have managed this on my own who did I think I was getting all this special attention? I was physically relaxed and not exhausted as I settled in my seat.
    Despite the great physical relief this experience gave me, I still ignore the motorized chairs at grocery stores, though part of me longs for the ease it would give me….one of the disturbing aspects of riding in the chair at the airport was that I was lower to the ground than everyone around me, no longer part of the crowd, apart from the “everyone” around me…..
    Regardless of rational thought, acknowledging how this extra help is a good thing, that I am entitled to, my emotional reaction is to resist. Anyone else have this struggle? I wonder if being a nurse or other similar helping profession makes this struggle more acute?
    Lois

  • Lina
    1 year ago

    Lois having been a caregiver of my family for so long before I was diagnosed I do believe that has a lot to do with the struggle. We are so used to taking care of others that we will refuse to care for ourselves unless we just can’t do anymore. I am learning that is the wrong approach. We have to take care of ourselves and let others take care of us so that we don’t cause more damage to our own minds and bodies. Believe me it is very hard to do and it is emotionally stressful but we MSers have to take really good care of ourselves before we worry about others. I give this advice but I am still attempting to do this. I have a great man God placed in my path at the right time who is trying to instill this in me. I am learning and he does take very good care of me. Him & my teenage son but he is a teenager so…LOL I also feel very depressed that my close nit family just doesn’t get it & make it not a big deal without thinking of how I feel and what I go through. I feel that if my boyfriend wasn’t around and I had to turn to my family for help I would have to go back to being a caregiver which I know would just deteriorate my condition a lot faster. Makes me very sad, but just know you are not alone in any way. I feel like I’m giving myself a pep talk so I hope this helps at least lift your spirits. Wishing you many more good days than bad. God bless

  • Christie Germans author
    5 years ago

    Thanks so much for sharing your story and being an inspiration to me. I, too, resist emotionally and it’s still something I’m working through. I am really glad to hear your story, it really helps me. Hugs!

  • RichG
    5 years ago

    Christie, it is not really a debate at all. Since 06 I have had MS and had to choose to pre board. My thinking about that as well as using a cane, walker, scooter or power chair is this: these things I choose to do to make living with MS easier
    for me HELP ME TO TAKE PART IN LIFE. And, really, isn’t that what we want for ourselves? To not miss out
    on as much as possible and to not
    give in to our challenges? For me, I
    never worried or cared what other
    people think. But please let me tell you what MS has done for me. MS has restored my faith in my fellow
    man. Almost every day as I go around on my scooter, or take a
    fall, or struggle with a door, there
    always seems to be some extra kind person there to help me! And
    as bad as MS can be to all of us,
    seeing this kindly expression of
    compassion almost daily is a
    welcome, yet unexpected
    happiness and catches me off guard even now. And I can only
    hope you find that same
    compassion. It makes it all
    somehow bearable. So best of luck, and make those choices that help YOU take part in life.

  • Lina
    1 year ago

    I wish we had more caring people like the ones you’ve had along the way. However, this also has a lot to do as to where you live. In big cities this may or may not be the case, unfortunately. I have not gotten to see what that is like but I see it all around me when I see others with physical impairments. I have always been very kind and helpful to others. There are also people out there who will refuse the help or get frustrated if you try to help but I still do it LOL. I will keep on doing so as long as I can. It is hard however for me to let others help. Reading these posts and comments is helping though so thanks for keeping my spirits up keep on keeping on 🙂

  • Christie Germans author
    5 years ago

    Thanks so much Rich! As I wrote in an earlier reply, I am still working through this yet have taken some steps in asking for help. I’ve traveled since writing this post up and have pre-boarding a few times. Once, while waiting to pre-board, I chatted up with a lovely woman who was very compassionate towards me and another time, I queued up right behind Michael Bolton, the singer. So, I guess pre-boarding does have some perks! ha, ha!

  • mary
    5 years ago

    I have debated this for years till a couple years ago when my husband and I went to Mexico. We called the airline in advance and set up for a wheelchair and an assistant to get us through. Let me tell you, that was the fastest check through TSA/customs we ever had!! Also, was in my powered wheelchair going to Florida and checked to see if would fit with the type of plane and it did. I was able to drive it to the door of the plane and they put it in the cargo hold and brought back up .

  • Christie Germans author
    5 years ago

    Hey Mary – thanks so much for sharing your story. Sounds like the best way to board a plane! Hope your trip was great! Best, Christie

  • Livingston
    5 years ago

    Hi Christie-

    I totally relate!!!!!! Yikes. Altho I used to travel A LOT for work; I no longer work. (Mainly because of cognitive stuff – doesn’t show!) So no longer a colleague issue – but the “But you LOOK fine; who are YOU to cheat the system and ask for help??” issue is very present.

    I have decided my sanity rates over the sanity of strangers.

    Do you have an MS ID card from the Rocky Mountain MS Assn? They issue identity cards that you can carry – to “prove” you have MS altho you don’t look like it. I showed mine @ the airport the last time I flew. My main issue is waiting in the horrifyingly long line – and getting more and more and more tired doing so. THEN there is the long journey down to the gate. Asking for help meant a zipping thru the line (went thru the airline employee line) and getting transported down to the gate via a little cart.
    It was such a relief!! I highly recommend it.

    Time to muster up that courage – and say “I deserve this. I want to make my life a little easier.”

    Something YOU can control!

    Good luck!

  • Christie Germans author
    5 years ago

    I have gotten better about this, thanks in part to all of the support here on multiple sclerosis.net. The last couple of flights I took, I pre-boarded and what a difference it made! It totally saved my energy and reduced my stress. Cheers! Christie

  • tesoroms
    5 years ago

    Last January, I had to cut my vacation in Mexico short because I was not feeling well. I was travelling back home alone but thought that I could manage it. After going through security and customs, I thought that I would have plenty of time to walk to the boarding gate. It was a long walk but I took my time and stopped along the way to get my balance and rest.

    Half way to the gate, I lost control of my left leg and could not walk the rest of the way without stopping and leaning against the walls and dragging my leg while inching myself to the gate. I almost missed the plane. I told the stewardess that I just had an MS attack but that I would be OK. My pride got in the way of asking for help. I was in denial and thought that this attack would be temporary and I would be able to walk out of the plane without any mobility problems. However, by the time the plane was about to land, I realized that I would not be able to stand on my own. I broke down and had to ask for a wheel chair. I called my son to pick me up and drive me home.

    I should have swallowed my pride and asked for help much earlier. I now have a cane so when I do travel again, I will bring my cane and ask to pre board. Everything moves so fast at an airport that trying to keep up when you have MS is unrealistic. This is one time when you have to accommodate your MS and treat it with the respect it deserves.

  • Christie Germans author
    5 years ago

    Hey tesoroms, thanks for stopping by to share your story. It’s nice to meet you. Sorry to hear about this stressful trip from Mexico – very scary and overwhelming and stressful to have an attack as you’re trying to catch a plane! I am glad to read that you’ll ask for pre-boarding for your next trip. I recently traveled and decided to ask for pre-boarding. It made such a big difference and the bonus? I met Michael Bolton! He was the first to board, I was the second. So, in addition to reducing the stress of travel, pre-boarding has its perks!

  • Pokervibe
    5 years ago

    Yeah recently a woman made a very rude comment while shopping she jut came out of nowhere and said to me its horrible of you to park in handicap spots when you clearly are not handicap One of these days I am going to be arrested for assault Im so tired of these comments how can I stop them or make them look like an ass for saying these mean things to me?

  • kmcintn416
    1 year ago

    My favorite reply for this situation came from a friend many years ago. When someone confronted her with the comment, “Excuse me, but you don’t LOOK handicapped”, she looked him right in the eye and said “And you don’t look like my neurologist”. Funny, he had no reply to that!

  • Christie Germans author
    5 years ago

    People are so mean! So sorry to hear you had to endure that. I am not sure what the best course of action is but, if you’re comfortable, maybe simply stating that you live with MS would be enough. It is very difficult to ignore what people say, especially since many of us live with MS invisibly. If anyone out there has suggestions, we would love to hear from you. In the meanwhile, hang in there ‘pokervibe’ and try not to let these meanies get to you. Best, C.

  • Grumpyangel
    5 years ago

    I have fibromyalgia and totally relate to everything you said. Some days I’m okay, some days I look drunk if I try to walk too quickly. I am “wobbly” and fall easily – 6 times this summer. Fortunately I usually just get bruises, but one time I broke my arm. I understand what you call “cog fog”. We call it brain fog. I had to quit working in May which is really frustrating. I have a handicap placard but only use it on bad days. You cannot see fibromyalgia, either.
    God bless you!

  • Nobu
    5 years ago

    I have gone through the same difficulty of deciding to ask for help, but now I need the wheelchair out to the gate since I use two forearm crutches and walk glacially slow. If you are just at the cusp of needing a cane, check out a hiking walking stick – some let you extend and reduce the length. That way you have a cane when you need it but can keep it in your car or use however. Kind of a nice way to slide into the change of using a cane.

  • north-star
    5 years ago

    I agree with Nobu, I loved my first walking stick– it let me stand tall and and walk without feeling hunched over. It took some of the sting out of needing help to walk. And it folded up when I didn’t need it! People stopped me to ask where I’d gotten it; there are a LOT of secret sufferers out in the world.

    All was well when I took my first trip with my stick until I put it through the scanner. I noticed sudden consternation among the TSA screeners, and as I waited to retrieve it on the other side I was informed that I couldn’t take it on board with me, it would have to be checked. I looked at the X-ray and was shocked to find the walking stick had a lethal-looking snow spike hidden under the cap on the end. I asked for and got a wheelchair to and from the plane, and had the spike filed off when I got home.

    I noticed that I didn’t need a day to recover on that trip and I’ve used an airport wheelchair ever since. If you get a sour look from a fellow passenger as you bypass long security lines you can always say (with a smile) “Trade ya!”

    Another thought to consider: you are avoiding the long screening line because the airlines want your wheelchair and pusher back ASAP to help another flyer get to the gate on time. There aren’t that many bonuses that come with having MS, be guilt free with this one, board early and enjoy your trip!

  • Jen
    5 years ago

    I always tell the airline when I get my ticket that I have MS and will need extra help and a wheelchair. That way if I am having a bad day and cant do it on my own I have the choice. I have never had an issue with it. I also have a Therapy dog who travels with me. ( my Neuro and Tatum`s vet wrote a letter for me to carry at all times so there is no issue.

  • Margaret
    6 years ago

    When it became obvious I could no longer navigate my way through an airport without becoming exhausted, I decided to look for help. Otherwise, my MS was going to stop me from traveling, and I was not about to let that happen! Now I ask for assistance with lifting my bag at check-in, escort through security, a wheelchair for the long walks to the gate, early boarding — everything I can find. Yes, I found it hard to accept at first, but I soon realized that it made the experience SO much easier, not only for myself, but my husband a well. He had been slowly taking on more and more of the “heavy lifting” for me and that was a lot of work for him. Now, with the extra assistance, we breeze through the airport! And if we have to navigate our way through an airport we haven’t been in before, was have our wheelchair operator to take us through the maze in the easiest way possible.

    My daughter gave me a picture a few years ago. It shows a woman with and air of exultation, and the caption is, “One day, she decided to forgive herself.” I have decided to forgive myself for needing help. (And I love my daughter’s insight…)

  • Christie Germans author
    6 years ago

    Hey Margaret. Yeah, MS is not going to stop us from traveling! You raise a really good point about relying on our loved ones. Taking the pre-boarding pass and asking for help definitely takes the pressure off them. And, love the quote. I will hang onto that one. Take care, Christie

  • Vickie
    6 years ago

    I read your story, nodding my head the entire time. I recently traveled to Reno, alone on business. Going was no problem. But the return trip was an MSers nightmare! The flight into Chicago was late. I discovered I had to get to another terminal and had little time to do it. I can’t run! So I walked as fast as I could. I was hurting. I was sweating. I git to the terminal only to discover I’d been given bad info. I had to go back to a terminal I had passed. I would have loved to hitch a ride but didn’t know how. So I pressed on. The ONLY reason I didn’t miss my flight was that the incoming plane was late. It took me quite some time to catch my breath. DidI use pre-boarding? No. I just didn’t want to have to explain myself.

  • Christie Germans author
    6 years ago

    Hey Vickie. Thanks so much for stopping by. Sorry to hear about your awful flight home! And, I hear ‘ya about not wanting to explain. Take care, Christie

  • Lala
    6 years ago

    Christie, thank you for writing this. You are not alone with this, especially being in the MS closet.
    When I travel, which is hardly never, I just bring a really light bag and buy what I need when I get there. I take xanax, ginger, strong mints. I book the knee room aisle above the wing. I try to board LAST and get out FIRST (gangway!) as I am also claustrophobic. I get to airport very early so I can “walk”. Although once I did miss the plane, even though they closed the airport door on me and the plane sat on the tarmac for 3 more hours, they would not let me on. The hardest part is changing gates far away with limited time and if it’s summer or hot, my legs and hands are NUMB!

    anyway, I am also saving my limited NRG for ‘fun’. Thanks for writing

  • Christie Germans author
    6 years ago

    Hey Lala – so glad to hear from you and appreciate your comment about not being alone with this. Am curious about the Xanax, ginger and strong mints, what’s the story there? Hope you’re well. Best, Christie

  • Christie Germans author
    6 years ago

    You guys are awesome! Thanks so much for sharing your stories and for the travel tips. Very, very helpful.

    Take care and bon voyage!

    C.

  • Rendeanne
    6 years ago

    I do travel frequently and aftr several trips on the kamikaze wheelchairs I have learned to accept it as something I NEED not want for the sake of getting through the lines faster by not standing for 45 minutes to an hour in security on some occasions etc.

    I travel out of one of the U.S.’s busiest airports and the long travel distance just to get to the gates is tiresome. I gave up on the pride issue and my travels are now so uch more enjoyable.

  • RichG
    6 years ago

    Let me make this a bit easier for you, hopefully. And this comes from a person with MS who just suffered the indignity of buying my first pair of mens Depends…ughhh! First, please stop worrying about what other people think about you if you preboard. People are mostly, by and large, suportive of disabilities. I have found this over and over and you will also if you let the “MS” out of the bag. Second, you must realize that walkers, wheelchairs, canes, scooters, ramps, parking passes, and yes even pre boarding, allows you one important thing: To take part in life! Once you understand and accept that, life opens up to you and people may even supprise you! They have me!

  • nancytngirl
    6 years ago

    Hmm interesting story as I face a somewhat, altho not entirely similar, situation. I have a unique opportunity to travel to Germany! My online bf would love for me to spend the month of september with him. My dilemma would be more of a ADVANCED severe disability MS. Not the “I can still walk, just wobbly” MS.. but the “There’s no possibility I can travel alone by myself, handle luggage, or even be able to walk” type of MS. I NEED a travel companion.. Family and friends are out of the question as I have no friends, and family absolutely forbids me to even try. The way I look at it.. This would be my very LAST chance to ever get to go anywhere. SURE he could come to America.. but my friends in Europe far outnumber my nonexistant amount of friends here in US. If you suggest “Why dont you just contact the MS foundations..” yea sure I have many times and have no idea how others got their help cause I never did. Any other suggestions?

  • ydress
    6 years ago

    I have had MS for 9 years, I have been very fortunate the last 5 years, I have been off all 12 pills of medications and daily injections. Even though I was feeling better being diagnosed with MS, I no longer had the desire to travel anymore. We just found out our 12 year old son may have a very rare syndrome that we have to see the only doctors that specialize in this illness. When I booked our flight to Boston, I ask for an end seat in coach so have leg room to stretch out my legs.
    This is the first time I told the agent, I have MS and if I can have extra leg room in economical plus. I got upgraded for free and you should know they save handicap seats in the front row of every class.

    Book your tickets through an agent not online, they will help you get the proper seats, which is the best way to guarantee one or if you already have your ticket as the agent at the gate desk if any of those saved handicap seats are available. You need to bring a letter from your MS doctor or your injection medication card you get that states you have MS. I no longer take injections so I will be getting a not from my doctor. I was very lucky since I have not traveled in years and only use my United mileage plus card, I had over 250,000 miles. I got our travel tickets at no charge and was able to get all 3 of us business class getting there and coming First class coming back home, both flights nonstop. 6-7 hours is a long time to travel when your legs go numb. I also find taking a couple Xanax on a long flight like this lets you sleep for 4 hours.
    I’m scared because my MS has reared it’s ugly head last year June of 2012, I have had an episode on my right side that went numb, I have had 2 three day steroid infusions, 2 MRI’s, and back on lots of medication like Efelxsor and Wellbutrin for depression the severe fatigue caused and Adderall to help keep me away. I have never drank coffee in my life, I’m 52 and now I drink a latte at 3pm to get me through the rest of my day. I have not worked since I was diagnosed however I did treat my illness as a full time job. Now with my MS spreading getting 3 new lesions in 6 months, I will have to start the
    BG-12 drug as soon as my MS doctor can get it. Yup not easy to ever have to deal with people when you have MS, you just never know when you will have a bad day until you wake up in the morning. Not an easy thing to deal with for the rest of your life, especially for my husband and now 12 year old son.
    Good luck traveling, you will be fine if you just take care of helpful things before you get to the airport.
    Ydress

  • 6 years ago

    Judging yourself and making life harder for yourself because you have MS is a bad practice.

    “But You Don’t Look Sick” is true for so many invisible ailments: renal failure, color blindness, diabetes, epilepsy, asthma chronic fatigue syndrome, fibromyalgia, AIDS/HIV, Schizophrenia, Developmental Co-ordination Disorder (DCD)/ Dyspraxia, ADHD, depression, anxiety disorders, cancer, allergies, and autism to name a few.

    When you suffer with MS, you have absolutely got to look for the silver lining on that cloud. My blog is titled “In It For The Parking” because when I was first diagnosed, having a handicapped placard was the only good thing I could think of that came out of the situation.

    For me, traveling on a plane is joyous. It’s one of the only times where MS works FOR me and not AGAINST me. I always get a wheelchair even if my legs aren’t wonky that day, I get to skip about a hundred people in the metal detector line, and I always get to pre-board. On carriers like Southwest, where you choose your own seat, it means I get a comfortable chair on the plane to boot.

    What I see in this article is a PRIDE issue. You’re still not accepting your multiple sclerosis as a condition that you proudly fight, but rather as a dirty secret that no one should know about. It’s not like AIDS where you potentially got it because of irresponsible behavior.

    Why on earth would you care if someone knows that you have MS? You’re not any less of a person for dealing with these difficulties; if anything, you’re more of an inspiration and an example of strength. It’s really our job to raise awareness and kindle empathy in people.

    If you haven’t done so already, I would strongly recommend a few sessions with a good psychologist or therapist. Having MS is obviously messing with your sense of self-worth, and it doesn’t have to.

    It is our JOB in life to take care of ourselves as best we can. No one else is going to do that for you. Pretending you don’t need more time does nothing but harm you and make you feel lesser than. You deserve better treatment than that.

  • JeanS
    6 years ago

    I can still do the long walk to the gate, but being able to board early would be very beneficial because of my balance problems. How do I get an early boarding pass? Do I ask at the gate?

  • north-star
    5 years ago

    Ask for assistance when you get your ticket and remind them when you check in. You’ll be met at the aircraft’s door with a wheelchair when you land. And don’t feel bad about bypassing security lines, the airlines want your wheelchair and attendant back ASAP to help another flyer.

  • 6 years ago

    Yep! It’s that easy.

  • dkr55
    6 years ago

    I always feel guilty as I am being whisked through the airport and past long lines at security on a wheelchair. I almost never use a wheelchair in daily life and spend hours each day around home, walking with no assistance. I do look quite healthy. Once, a TSA commented after finishing their check, “Here’s your wheelchair, but you really don’t look like you need it.” I wasn’t sure if she was joking. On another trip, I stumbled as I left their scanning machine and had to be caught to keep from falling. When my wife books flights, I always tell her I can make it without a wheelchair, but she always quietly schedules me for assistance.

    The bottom line is that my spirit of independence of feeling bad for the people that stand in long lines at security while I am wheeled to the front is just foolishness. I can walk unassisted for short distances, but there are no short distances in an airport. I am a big man (6’3″, 260lbs.) and if I fall, I am going to take out a whole herd of other passengers. I might feel like I could walk to my plane, but after sitting in a cramped airplane seat for a few hours, I can barely walk to the door of the plane and am quite happy to see a wheelchair and attendant waiting there for me. It is nice to look healthy, but MS is the reality.

  • 6 years ago

    I am very glad that you are doing what you need to do to have a positive experience with travel. The ADA rules and airport procedures exist *specifically* to make travel possible and life easier for those of us who are disabled. It’s considered “leveling the playing field.”

    You absolutely should have reported that TSA agent to his/her manager for discrimination. That comment was terribly out of line. No one knows just by looking at you what you’re struggling with. MS isn’t the only invisible illness! I hope you don’t have to endure that again.

  • Laura Kolaczkowski
    6 years ago

    The past couple years I have had the opportunity to travel -alone without my husband to hang onto. I’ve not hesitated to ask for assistance at the airport when my ticket is booked. The wheelchair lift can be demoralizing because I don’t normally use a chair, but I have found it welcomed. I do carry my cane when I travel because it gives me stability on those shiny airport tile floors but it is also a visible sign that I need that blue boarding pass.

    I have preached over and over about being smart with our MS – conserve our precious energy for those times when we need it by making use of those rare opportunities. If it’s parking in a spot that takes a placard or asking for help at the airport, it leaves me more energy to accomplish my ultimate goal.
    keep traveling, Laura

  • Ronald Huff
    6 years ago

    I enjoyed this article and it reminded me of my first wheelchair assisted traveling. It was embarrassing to me in most ways, but this was something mostly within my head. Some parts of it were scary. Wheelchair attendants don’t mess around. Stepping into the chair, automatically being raced to the escalator, tipped back, and taken down backwards staring at the ceiling. Upon reaching bottom, I was whirled around, sat down, and raced to the carousel belt. Upon getting the bags, me and my wife were hustled with them to the terminal waiting room. There we were deposited, the wheelchair left with its attendant, and it was just the two of us left holding the bag, so to speak. I’ll never forget.

  • joannmaxwell
    6 years ago

    Oh that is so eloquent and precise!!!!

  • Patti girl
    6 years ago

    Loved the read and you’re right, travel can be so daunting with ms. I used to refuse the wheelchair through the airport. I thought, I can still walk it will just take me longer. Now I walk with a cane and there are no more questions about whether or not I need assistance. It’s almost a relief to have the secret out. In fact, on a recent trip abroad, I was wheeled to my gate and through customs and security without waiting in line. I basically cut in front of a hundred people everywhere I went! And you know what, I didn’t feel a bit bad about it. The work of having ms ought to have a few bennies, you know?

  • 6 years ago

    Very well said!

  • Ronald Huff
    6 years ago

    Bennies is a good word for it. At first it seems like a benefit, and it should, but the time comes when it might seem a blessing. Then we may think, how could I do that ordinary way? Thank God for this.

  • Living with MS since 2002. Keynote speaker for Women's Conferences and travels with my husband who is a country Christian recording artist. We do not get to choose what life gives us but we do get to choose how we handle the situation.
    6 years ago

    I always pre board. As you know, living with MS it can show its ugly face at any moment. I am GLAD that we as MS patients do not look sick. We do not need to wear a sign around our neck that says, “I have MS” I am very glad that my body hides it well for I know that one day my body may not hide this disease. But until then I will take that blue pre boarding pass because when I have to fly alone I cannot lift my carry on bag and I do need assistance, thank you very much flight attendants.

  • 6 years ago

    Assistance: it’s what flight attendants are there for! They’re not just sky waiters.

  • Ronald Huff
    6 years ago

    Go for it!

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