I'm planning the long-ish trip home from Italy to Ohio and this will be the first since the "big bang" in 2011. I'm wondering what might be helpful to have along in case the trip is as tiring as I think it will be. I'd love your expert input on these things.
I've had more foot drop lately than normal and my hip is occasionally going to water when i need it. I've been resisting use of a cane or any kind of foot device, but I think being stubborn in this case wouldn't be very helpful in the long run. Add to that the fact that my balance is now "sideways" and I'm really thinking I'll need something. Any suggestions? Would a foot brace help the foot drop? Are there any travel friendly walking devices you can recommend? I've looked at canes, walkers, etc and I'd love a solution that alarms my family as little as possible.
I know this is kind of personal, but does anyone have a suggestion of how to handle urinary issues? Airport bathrooms are so often at the END of the corridor and full of long lines of people who are running late, etc. Other than not drinking very much, I'm not sure what might be the best way to deal with this.
I'm making a few new eye patches and am trying to be as prepared as possible. As the first time I'll fly with these issues, I need some direction on what the best way to go may be.
On a brighter note, my TN has finally let up for which I'm very thankful.
Hi. Are you talking about just the travel to and from, or about the whole time you'll be away? Maybe both?
First of all, please don't worry about your family's alarm level. They'll get used to whatever it is, and your safety and comfort trump family concerns. I'm being stern here, okay? :-)
I hope you have time to try out some walking devices beforehand to see what best fits you. Many here have big success with braces for foot drop, but you need to be fitted by a specialist and have some time to get acclimated.
A cane can also be very helpful, particularly with balance and giving you greater confidence. Cane usage needs to be taught too. There's a folding or collapsing kind that is very handy.
As much as you may hate the idea, buy some Depends or other adult 'diapers' for the actual trip, and carry a change of underwear and some wipes for cleanliness. You probably won't need this stuff, but just having them reduces the anxiety level if worse comes to worst.
Above all, use a wheelchair provided by airlines for all trips through terminals and so on. This is so important, and relieves you of a lot of fatigue. Don't be shy about this, or embarrassed--it's necesssary. Coming to terms with MS is not fun, but not doing so is much worse.
I'm sure others will chime in with more suggestions.
I found an AFO by Ossur on ebay just now. Actually, I guess it's not "an"
AFO, because they have all sizes. It's probably not as good as one your doctor can get you, but it only costs $39.99- and it should at least help. I don't know if you use ebay or not, but you can usually contact the seller for help getting it shipped to you when you're not at home. It's worth a try anyway.
It also sounds like a walker with a seat might be helpful. Alternatively, inform the airlines that you have a disability, and that you need them to get you wheelchair service. I always do that when I travel. There is no charge, and they have the wheelchairs. They take you too and from the gates, and you get priority boarding.
I hope this helps. If you have any other questions, please feel free to PM me.
The urinary issues can be a problem for sure. The only thing I can usually do is wear an absorbent pad. That gives me the security to know that if I don't "make it in time", it's not a complete disaster.
I went with an AFO since I could not afford the other wonderful devices and have never been happier. It's light weight, only had to be padded and shimmed a couple times and I have not fallen since. The bottom of it which goes under my innersole in my shoe, is full length of my foot and prevents my foot from turning under and also is slightly spring loaded and causes my foot to come up rather than turn under.
It would certainly be a quick fix. I have a "folding" cane that accompanies me in my tote bag but I have only had to use it once since starting my AFO use, and that was on very unsteady ground.
YES, YES, YES!!
PRE-ARRANGE all gate transfer assistance. With one airline I had to confirm the arrangements all along the way but Delta delivered Wonderful service. They had a personal transporter waiting for me at each stop along the way and each one knew my name (so nobody else could steal my ride!). One man made the difference between making my flight and missing it. I tipped him extra.
Do this for yourself unless you are familiar with each airport and Absolutely Confident of your ability to walk fast independently while carrying anything. Getting through airport terminals is harder than ever these days. Everyone is using carry-on luggage that they trail behind them as they zigzag along looking everywhere except where they are going. It creates a real obstacle course. If you have the least doubt, save yourself for fun things and concentrate on greeting the family with smiles.
Timing is everything when it comes to bathroom use. I try to use the on-board facilities before descent begins. An attendant may be willing to help you know when to say ‘when’. On the ground, always pass by the first rest room. There is usually another one not far away with a shorter line - maybe no waiting. I found I didn’t want to stop the transporters as they rushed me from gate to gate. There isn’t always time on the ground anyway. If there is, I keep an eye peeled for a ladies room and get myself there once I see what time remains before boarding. Key to comfort is knowing your flight schedule and planning ahead.
Remember to dress in layers. It can get very hot and stuffy on the plane waiting for take-off. Once you’re airborne it can get chilly and there aren’t many blankets to be had these days. Delays happen when traveling and you have to be prepared.
Make sure you have any medications with you as part of your carry-on luggage.
Whatever you need for walking assistance…… USE IT. It is okay for family to know your life has changed. It might also be good for You to realize how much farther you can go and how much longer you last if you use an assistive device. It takes a lot of energy to maintain balance. From your description of your walking difficulties, it sounds like a rollator type of walker would be the biggest help if you intend to do much walking around. Otherwise, you might get away with frequent rest breaks. You might have to wait and judge as you go. Most aides can be rented or borrowed.
Have a great time! You’ll have to give a big wave to the many forum Ohioans while you’re back in the state.
I agree with everyone's sentiments about getting assistance from the airline in getting to your gate. Even if you are sure you can make it through security, customs, etc on your feet, you really want to conserve as much energy as you can for such a big trip. Not only will you save the energy of being on your feet and schlepping your own carry-on, but you'll get through the lineups so much quicker that it will make the whole experience less draining.
Pack in your carry on everything you'll need to be comfortable in-flight. I recently made a round trip flight from Vancouver to Hong Kong, a 13 hour flight that I dreaded. I was worried I'd be so uncomfortable that I wouldn't sleep and would feel horrible upon landing, and be jet lagged and fatigued for days. So, I packed a good neck pillow, lumbar cushion, coccyx cushion (broke my tailbone years ago and it still hurts on long flights), blanket, eyeshades, industrial quality ear plugs AND noise cancelling headphones. My friend laughed at me and my over-preparedness. However because of these comforts, and with the help of a sleeping pill, I fell into a really deep sleep for hours, which almost never happens to me on a flight. I actually felt refreshed and comfortable when we landed. A few days in I ended up catching a major cold with severe laryngitis, and I think would have been in much worse shape had I also been severely jet lagged and not rested.
Some really great ideas you've all given me. The travel to Ohio includes a stop in Chicago for a few days and then making my way to Ohio from there. I'm buying clothes for my husband and I for the next few years (so much cheaper) and I'm expecting it could be a pretty busy trip.
That is a super idea about looking at AFOs on ebay, Tammy. I hadn't thought of that and I found some I can order in the UK and have shipped here pretty easily/cheaply. Found a collapsable cane there too (thanks for that idea ess!)
Sarah, what type of AFO do you use? It sounds like a good system. Mary, thanks for the good tips. Sounds like you've done this a few times yourself. I do kind of fear alarming my family since last time they saw me I was tan and energetic and now I look like I've not left the house in months (I have, but keep my face covered from the cold wind thanks to TN) plus the walking issues... I've already heard from all of them how this is my fault for one reason or the other (eating junk food, eating gluten, not exercising often enough, etc, etc... ) Not sure how they'll deal with actually seeing me in the state I'm in and I want to look my best. Even if I'm propped up from behind. ;)
I'm having a hard time considering a wheelchair. I feel like I'd be taking it from someone that might not be able to walk at all. I can walk, just very carefully, preferably with a hand on a nearby wall. lol. Thinking about it further though and reading all of your comments and reasons for using one for airport transfers, I think I'm going to take your advice on that as well and go for it. Reconsidering what I wrote about my symptoms I'm wondering if this is a relapse connected to having TN still. I was in better shape not too long ago.
DV, how was Hong Kong? I've always wanted to see it. Sounds like you're a pro at this too. You reminded me to ask my doc for some sleeping pills for the occasion even if my long flight is only about 8 hrs if I remember right. :)
I am excited to hear this trip is coming for you - Cheesecake Factory for dessert and coffee sometime? Now to your questions -
Stop thinking about those other people who might need a wheelchair more. At least on the US side going out, there are plenty of people waiting to help - just remember to give them a tip. You will be surprised how much it helps to get that extra ride to and from the gate - be smart about where and how you use your energy to get around.
The people who help with transportating wheelchairs are allowed to short cut the inspection lines here in the US and that speeds up the wait considerably at the larger airports. The less time you spend in line, the ore time you can be at the gate, relaxed and waiting to board.
Be sure to call the airline and declare your disability - MS is well recognized and as such, on my last few airline flights, I have asked for and gotten bulkhead seating. The additional leg room is helpful, especially on those longer flights, to stretch and flexthe feet/ankles.
During the flight, be sure to get up and walk at bit - this is really important to help avoid DVTs from devleoping.
Do NOT cut back on your fluids - being dehydrated can damage the kidneys and you don't want to bring on those problems. Drink water, and plenty of it. You've been given some good tips about preparing for long runs to the bathroom - but one of my best ones is be sure to use them in the airport before you board the flight.
I'm ore than happy to talk to you about the trip tips I've used - just let us know what else we haven't answered for you.
I hope I can meet up with you for that chat, soon.
I have lost it twice in public (pee, that is), and what a miserable thing to happen! Boy do I sympathize. These were about a year apart and haven't happened in a year or so now. My urogynecologist tells me to be pre-emptive about these things. Always visit the bathroom before going out, and find the public restrooms right away. Go every hour or so whether or not you feel you need to. This applies to airports and planes, of course.
On planes, you get the added benefit of walking up and down in the aisles periodically, which as Lu says, is necessary for good circulation. And I agree, don't let yourself get dehydrated just to minimize restroom trips. Not a good plan.
There are plenty of wheelchairs at airports, and plenty of attendants whose jobs depend on members of the public needing them, so don't focus on that part. Even if you are wheeled to your gate and then are perfectly capable of walking onto the plane unaided, so what? You have saved yourself a LOT of exhaustion that way. Some airport concourses are extremely long. I had to walk at least half a mile between international and domestic concourses in Boston, carry-on luggage in tow, and it was way too much for me. Never again.
Make sure you line all this up with the airline(s) well in advance, then recheck the day before your flight. You are not looking for a 'free ride,' you are wisely conserving your energy because you have a debilitating illness. There's only so much energy for you in a single day, so spend it wisely.
Laura makes a good point about calling the airline In advance, informing them of your MS and requesting preferred searing. if you're travelling with your spouse you should let them know you need to ensure you're seared together. don't know what airline you're on but I've flown Alitalia to Italy and despite being assured I would be seated with my spouse, we were separated, both in terrible sears, both ways. same thing happened with Air France. This was before my MS; now I would be sure to mention it so they don't change my seating at the gate.
Hong Kong was great! it's a very compact, very high density city. Clean, very friendly and courteous locals. Those working in the service industry can't do enough for you. British influence still very apparent. Signage everywhere is in both Cantonese and English, which makes getting around very easy. it's a very international city. I didn't run into anyone who didn't speak English. I didn't do much shopping but if that's your thing, there is plenty of it. I primarily went to visit an old friend from school, and he really rolled out the red carpet for us, and the dining and drinking was great. :) it was more of a visiting trip than a sightseeing trip, and between that and getting sick for several days, I didn't see as much as I would've liked, so I will definitely return. Seems you are also one who likes to travel, so I'm sure you'd enjoy yourself there.
Laura, I'd love to get cheesecake and coffee with you! Before moving to Italy I lived there and miss easy cheesecake access. I'll let you know when I get my dates nailed down and hopefully we can meet up.
Ess, I can totally relate to the pee accidents in public being awful. 12 years ago (before I even knew what MS was) I had a series of about a dozen accidents in about 8 months and that was likely my first attack. It's been the symptom I'm most likely to get when other new symptoms come up and wear me down. Make everything more tricky, doesn't it?
DV, your account of Hong Kong makes me want to see it even more. I've heard really great things about it and hope to get there one day. I'm not really a shopper (with the exception of outlets when we're in the States), but I'm all about the food and sightseeing. How cool for you that you were able to enjoy a new place in the company of an old friend. Glad you enjoyed it.
I don't have a definite diagnosis yet (some of you might remember I'm waiting on those 9 lesions for a dx here). And I hope to see an MSologist while I'm there to see if they have any more insight as to what's going on. Thanks all for your tips here. I feel like I have things better in hand and am working on implementing your ideas into my trip.
I sent my records to an MSologist in Chicago for a review of records. He's the last piece of the puzzle that I'm waiting on and I should hear something soon about an appointment. I hope that he's a good doc and will be able to help clear things up. :)
Hii! Have a wonderful trip. I go to Cleveland fairly frequently - my Dad grew up in Toledo. We live in NJ now. Anyway, would be great fun if you 2 could get together for cheesecake and coffee! Altho the coffee will certainly be a disappointment. Don't know why it is so hard for Americans to make good coffee! I love food and sightseeing more than shopping too when traveling. How far away are you from St. Moritz? Latsch? CH? Dear friends there and have been many times.
Anyway - having an "accident" is certainly mortifying. I was in a department store a winter ago and didn't make it to the bathroom. Fortunately I had long underwear on that absorbed most of it, so wasn't too obvious as I slinked out of the store! Now it's pads when I don't know exactly where I am going or what I'm doing. But I'm always worried that they really won't "hold" enough. Anyone: any comments?
I totally agree w/ getting a wheelchair at the airport. Those lines can be an hour + standing. NOT good. Last time I flew, didn't make plans in advance - but once I got up and got a look @ the line went right back down to the baggage check area to ask for a wheelchair. (A bit of a pain. Do in advance!) Do you have some kind of disability "ID"? The Rocky Mountain MS Society sends out ID cards which I have, but haven't used. Think would be handy. Maybe just a note on a prescription pad that says probable MS. List any symptoms - then you don't have any question w/ anyone.
Make sure you pack light too. Buy stuff if you end up needing it. Rolling luggage only. Lightweight backpack/bag for day trips. And yes, stay hydrated - make sure it is pure water tho. And try to stay rested. !
Have a wonderful time - hope your family doesn't give you a hard time about not living up to their expectations of perfection! Just tell them you need their support, not judgement. Please - it means a lot to you........ (As if I know your family!!! LOL)
Good luck - and Have FUN!!!
Marcia (another dog -and animal- lover - check my profile!)
Hi Marcia... Not only are we both dog/animal lovers, but it would seem we both love Maltese dogs! I have two at the moment. Before them I had a bichon and golden. Aren't they fun?
From "my" alp ;) I can see the matterhorn and mt blanc (Switzerland and France respectively). But I'm about 5 hours from St. Moritz which is on the eastern side of CH. How fun to have friends there. I LOVE Switzerland. Everyone is so friendly and polite.
As for accident advice, I have none. 12... well 13 now I guess... years ago I had what might have been my first MS episode (did I already talk about this, if so, just tune this part out). Anyway, incontinence. Anywhere and everywhere. If I didn't remember to use the restroom before leaving a restaurant I wouldn't make it home. I ended up keeping one of those round plastic sleds behind the seat in my car after having my car seats cleaned a few times. Once that cleared up, I didn't have that again for years. So I didn't really connect the two things. This time I'm taking the advice above and being prepared. There's no way I want to have an accident on an 11 hr flight. Ugh..
I don't have a disability ID, but I have stacks of papers that say I might have MS and those are coming with me in my carryon just so they don't get lost. If I had to I could whip em out. Funny you mention packing light because I always go with next to nothing and come back full. Things are just so expensive here and so much less expensive there. Not looking forward to the shopping marathons, but I always regret it if I don't get stuff while I'm there. (for example.. just bought a pair of shoes on amazon US for $40 that sells for 325 euros here-about $430!)
As for my family, I'm sure it'll be bumpy at first, but they'll come around. If not, I can always go back home to Italy lol... Thanks for the comments and advice. :)
Oh, and I happen to love American coffee. lol Maybe it's a nostalgia thing, but I even water down the thimble of espresso they give in the cafe here with a splash of milk or water... even after lunch with is apparently appalling. They know me as the "americana" and just shake their head at me. ha... As for the closest piece of good cheesecake, I'm pretty sure it's in New York. :)
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