So I am someone who loves to travel. I also usually like things like hiking, climbing through caves etc. I also love Disney and cruises. I am worried about traveling with meds., wheelchairs, scooters, walkers, etc. Any tips for travel with this disease and disabilities?
Hey Scienceteach,
I can't talk to the scooters/wheelchairs but I'm hoping Mod Seenie will as she has a VERY packable travelling scooter.
As for drugs--no problem. Make sure every pill bottle is labeled with its precription. If you're taking injectibles use a travel pouch. Manufacturers of drugs like Humira and Enbrel make handy travel packs for their medications which includes cool packs. Read the instructions of the medications carefully as they tell you whether you can use a drug which hasn't been refrigerated and for how long after refrigeration your drug is effective. I've traveled to Mexico, South Korea, China, and France with my cool pack. Airport security might pay extra attention to the gel packs (because they show up cloudy and could be filled with who knows what...). I got extra screening in Schipol/Amsterdam but it wasn't a big deal.
Happy trails!
Scienceteach, now you've really got me going. You thought that my treatises about rheumatologists and diagnoses were long ... ha ha ha
So, aside from being a teacher (retired, but you know what they say about taking the teacher out of the classroom...) the other major part of my identity is "traveler". I'm not a hiker like you, but I am an insatiable urban and country walker. City streets, urban markets, canal paths, museums, grand cathedrals, country roads, ancient temples, mountain trails, historic sites ... my feet have gone there. For me, the hardest part about having PsA has been the loss of ability to walk anything but very short distances. (Or is it the ugly shoes ... no, I'd wear the ugliest shoes if it meant that I could go for a long walk. But I can't, so that's that.) I can, though, find ways of working around the restriction. But more about that later.
I concur with Jane about travelling with meds. No issue there at all. I travel with a patient summary from my pharmacist which details all of my drugs and dosages, and why I take them and I've never been interrogated or significantly delayed because of my medication. But I would also add that I've haven't been to the "drug difficult" destinations such as Singapore and Dubai since I started travelling with my own personal dispensary. As for travelling with three prosthetic joints, that is merely an inconvenience. But there again, you meet some of the nicest locals when you get diverted for patdowns and extra security screening! (Except the people who work for TSA, haven't met a nice one yet, but that's a whole other set of stories best told when I've had a few stiff drinks. But I'm on MTX, so no TSA stories.)
I got my first scooter when I thought my foot inflammation was temporary, and I was on holidays feeling sorry for myself. I got a Pride GoGo Traveller Elite because I could break it down into four parts and load it into my little Toyota myself. (My plan was to sell it when I got better. Ha!) It's great, and to be honest, it has gone where really no scooter should go -- muddy paths, wet cobblestone streets, etc. But I go anyway, figuring I'll sort the problems later. If I don't go where I want, I'll go crazy and that's harder to fix than a scooter. I love my GoGo, and even though it is relatively light and transportable, it is still a problem when I am confronted with an unexpected short flight of stairs, an uncut curb or a threshold into a restaurant. I like restaurants, LOL. I've had my GoGo for five years now, and travelled a great deal with it. This year, though, I reluctantly accepted that my foot damage and disability is permanent and that if I want to do anything besides accessible travel, I would have to have a lightweight travel scooter. Don't get me wrong: there are plenty of wonderful, accessible places to go in this world, but I don't do restrictions very well.
We had been toying with the idea of a holiday in Cuba for a while (It's the ultimate cheap beach vacation for us Canucks) but we knew that it was going to be difficult at best, and maybe impossible, to enjoy it with my being on a relatively large scooter. I decided to blow (and I mean REALLY blow) the savings on a Smartscoot. The irony was, the scooter cost us far more than the holiday. But what a great decision! This machine weighs about the same as a bicycle (19 kg) so I can lift it over barriers myself. It folds, so it takes less space than some baby strollers, and it is not bulky, so can be stowed very easily in car trunks, luggage areas and small corners. Sometimes, though, I think the best thing about it is that I attract attention and I meet the nicest people who want to talk to me about my wonderwheels! But back to Cuba: I could not have done that trip without it. Unlike most of the other destinations that we've been to, it is only minimally accessible. They are trying, but there's still a very long way to go. Going there with my lightweight wheels has given me the courage to go to other less accessible destinations. (I have a friend who thinks I need to go to back to India with her. Thanks to my new scooter, that notion has been upgraded to "maybe" from "not a snowball's chance".)
So, aside from being a teacher (retired, but you know what they say about taking the teacher out of the classroom...) the other major part of my identity is "traveler". I'm not a hiker like you, but I am an insatiable urban and country walker. City streets, urban markets, canal paths, museums, grand cathedrals, country roads, ancient temples, mountain trails, historic sites ... my feet have gone there. For me, the hardest part about having PsA has been the loss of ability to walk anything but very short distances. (Or is it the ugly shoes ... no, I'd wear the ugliest shoes if it meant that I could go for a long walk. But I can't, so that's that.) I can, though, find ways of working around the restriction. But more about that later.
I concur with Jane about travelling with meds. No issue there at all. I travel with a patient summary from my pharmacist which details all of my drugs and dosages, and why I take them and I've never been interrogated or significantly delayed because of my medication. But I would also add that I've haven't been to the "drug difficult" destinations such as Singapore and Dubai since I started travelling with my own personal dispensary. As for travelling with three prosthetic joints, that is merely an inconvenience. But there again, you meet some of the nicest locals when you get diverted for patdowns and extra security screening! (Except the people who work for TSA, haven't met a nice one yet, but that's a whole other set of stories best told when I've had a few stiff drinks. But I'm on MTX, so no TSA stories.)
I got my first scooter when I thought my foot inflammation was temporary, and I was on holidays feeling sorry for myself. I got a Pride GoGo Traveller Elite because I could break it down into four parts and load it into my little Toyota myself. (My plan was to sell it when I got better. Ha!) It's great, and to be honest, it has gone where really no scooter should go -- muddy paths, wet cobblestone streets, etc. But I go anyway, figuring I'll sort the problems later. If I don't go where I want, I'll go crazy and that's harder to fix than a scooter. I love my GoGo, and even though it is relatively light and transportable, it is still a problem when I am confronted with an unexpected short flight of stairs, an uncut curb or a threshold into a restaurant. I like restaurants, LOL. I've had my GoGo for five years now, and travelled a great deal with it. This year, though, I reluctantly accepted that my foot damage and disability is permanent and that if I want to do anything besides accessible travel, I would have to have a lightweight travel scooter. Don't get me wrong: there are plenty of wonderful, accessible places to go in this world, but I don't do restrictions very well.
We had been toying with the idea of a holiday in Cuba for a while (It's the ultimate cheap beach vacation for us Canucks) but we knew that it was going to be difficult at best, and maybe impossible, to enjoy it with my being on a relatively large scooter. I decided to blow (and I mean REALLY blow) the savings on a Smartscoot. The irony was, the scooter cost us far more than the holiday. But what a great decision! This machine weighs about the same as a bicycle (19 kg) so I can lift it over barriers myself. It folds, so it takes less space than some baby strollers, and it is not bulky, so can be stowed very easily in car trunks, luggage areas and small corners. Sometimes, though, I think the best thing about it is that I attract attention and I meet the nicest people who want to talk to me about my wonderwheels! But back to Cuba: I could not have done that trip without it. Unlike most of the other destinations that we've been to, it is only minimally accessible. They are trying, but there's still a very long way to go. Going there with my lightweight wheels has given me the courage to go to other less accessible destinations. (I have a friend who thinks I need to go to back to India with her. Thanks to my new scooter, that notion has been upgraded to "maybe" from "not a snowball's chance".)
If you like cruising, you will find yourself in the ultimate accessible environment. When you arrive at the port, life becomes just.so.easy. There's usually a separate check in, and whatever assistance you need all the way to "onboard". And then it's all level access until you disembark. We have cruised a lot, both before disability and after, and I can tell you that my disability does not spoil the experience. If anything, I get more and better service than I did before. Staff is kind, solicitous and helpful. Fellow passengers, for the most part, are as well. I do not get an accessible stateroom, so I do need to negotiate a storage location for the scooter onboard. That's usually the elevator lobby.
I have some travel-related blogs (which I can retrieve and post even though the blogs feature of this site has been closed down). I hope you enjoy them.
I consider myself very fortunate to still be able to walk short distances, and to be strong enough to lift my lightweight wonderwheels. Accessible travel has, generally, been a good experience for me. It complicates life a bit, but it also has its benefits in terms of meeting so many of the world's wonderful and kind people. Don't be afraid of it.
Seenie thank you for all of that! You are a lot like me I do not do well with restrictions or limitations. I canceled a cruise for February because it was only three weeks from diagnosis and I was two weeks into not walking but we are going in August. By then either I will have improvement or I will bring a go go scooter. I have to keep going and that same trip we are going to Disney World too. At diagnosis I told my doctor I was a traveling teacher and he said that is not a great job for you but so far I am doing it. Though it does hurt! Hope to hear more insight if anyone has any. Seenie I am on methotrexate as well and am going to miss going to tastings used to like that too. Instead of hiking my husband and I are thinking of doing kayaking as long as I can hop or hobble somewhat to the kayak. I will take a look at your blogs too! Also looking into that scooter that sounds easier for me. I am afraid this may not be temporary as well. I went for an mri of my worse foot yesterday for more information but no results yet. Thanks Seenie you give me hope for many wonderful exploits. Do you know is Montreal handicapped friendly? Thinking about the museums mostly not a wild night club girl anymore.
Tastings, Scienceteach, as in wine?
As for Montreal, yes ... well ... we definitely have views on Montreal! But I will let Mod janeatiu explain. <VBG>
Scienceteach said:
By then either I will have improvement or I will bring a go go scooter..
Trust me, bring the scooter, even if you are feeling better. PsA is like the weather, if it changes ... not having wheels will spoil your holiday for sure! (Although I suppose that, if by August you are able to function normally on your feet ... you might be able to do without.)
nstead of hiking my husband and I are thinking of doing kayaking as long as I can hop or hobble somewhat to the kayak.
Great idea! Definitely worth a try.
I will take a look at your blogs too!
No ... at this point, blogs are only accessible to the people who wrote 'em. But I can share. I'll have a look for things that may be of interest.
LWPSA Mods take on the Montreal Botanical Gardens with scooters and wheelchairs and sunburns.
Seenie said:
As for Montreal, yes ... well ... we definitely have views on Montreal! But I will let Mod janeatiu explain. <VBG>
And REALLY bad hair! The figure in the background is tntlamb, in effigy. (Even though he looks more like a lion.)
We can assure you, Montreal is very do-able for people with mobility restrictions.
Yes wine martinis anything like that. I will miss it.
Seenie said:
Tastings, Scienceteach, as in wine?
I can’t tell you how heartening I find this thread! I really, really, REALLY want to do more travelling, and have retirement plans (retirement?! HA! But that’s another story!) for an international road trip, and have been more depressed by the thought that I probably can’t now, than by almost anything else… You give me some hope 
I haven’t been on holiday/away for more than 4 nights since 2009, because of my failing mobility. In January, while high on my first-ever depo steroid injection, I booked flights to Croatia… Then as its effects started to wear off, I started to worry about whether I’d bitten off more than I can chew. I still worry. I have booked private accommodation in 6 different places, including 3 islands, from Split to Dubrovnik and back! Both my sons will be with me for the first 10 days, then the eldest goes back to work, and it’s just me and the 16 year-old. He will be carrying almost everything, but still… I am trying not to panic, and really want to be able to get properly EXCITED, and am focussing on the fact that all our accommodation, except in the two cities where there are buses, is just 200-300 yards from the sea, so all I need to do is get there and back! I fret that my lack of mobility will stop my sons from having a fun holiday, esp when it’s just my youngest and me… My budget prob won’t allow the purchase of a scooter for some time yet… I keep dreaming of a ‘cure’… I guess I’m not even at the point you were when you bought your GoGo, Seenie (and I have a little Toyota too!)… Sometimes I think my reluctance to be disabled is my biggest disability…
You can do it flow. Refuse to let this disease be your ball and chain! You have a choice: stay strong or stay home. (Ha! I just came up with that and I think I like it!) So you can't afford a scooter? Fine, then buy a second hand wheelchair. OK, I hear you, you are not going to be pushed around in a wheelchair like a little old lady. But look at it this way: do you want to burden your boys with Mom sitting on a wall saying "I can't ... I can't walk another step ... no, you go ahead, I'll be all right ... " C'mon. Get a wheelchair. Put your stuff on it and YOU push it. (I call that "me and my invisible friend", yes, call me crazy.) When you just.can.not.walk.another.step, you sit down, and one of those strapping boys can push you until you can walk again. Or if nothing else, you have your seat with you.
And what if you find that in the lovely warm Adriatic sun, you're just *fine*? Well then, abandon the wheelchair, donate it to a Croatian who can't afford one. Make someone smile. Enjoy your holiday. You can do it.
Thanks Seenie Something like that, yes. I don’t think it’s a wheelchair, because my wrists and hands and shoulders are bad, so even walking sticks are hard to handle, but something. And I’ll have been on MTX 6 months by then, and I’ve been promised another depo steroid injection, too…
Get busy living or get busy dying. My favorite quote and I choose trying to live. I canceled two trips this year and hope never to do so again I can sit at home in pain or I can get out there in pain I would rather do the get out there. Flow sounds like a scooter might be best for you. I tried a cane at first but it hurt my wrists hands and hip. Then I went to a wheelchair it hurt my hands too. Now at work I use a scooter it is more comfortable and easier.
You can do it! Just have realistic expectations of what and how much you can do while there. I will have to take the same advice we used to go to Disney world parks open to close in the summer which can be a day from 8 am until 12 a.m. it is not going to be like that anymore I understand that I just have to be happy enough to get to go. Who knows maybe it will be even better because I will appreciate it more.
flow said:
I can't tell you how heartening I find this thread! I really, really, REALLY want to do more travelling, and have retirement plans (retirement?! HA! But that's another story!) for an international road trip, and have been more depressed by the thought that I probably can't now, than by almost anything else... You give me some hope :) I haven't been on holiday/away for more than 4 nights since 2009, because of my failing mobility. In January, while high on my first-ever depo steroid injection, I booked flights to Croatia... Then as its effects started to wear off, I started to worry about whether I'd bitten off more than I can chew. I still worry. I have booked private accommodation in 6 different places, including 3 islands, from Split to Dubrovnik and back! Both my sons will be with me for the first 10 days, then the eldest goes back to work, and it's just me and the 16 year-old. He will be carrying almost everything, but still... I am trying not to panic, and really want to be able to get properly EXCITED, and am focussing on the fact that all our accommodation, except in the two cities where there are buses, is just 200-300 yards from the sea, so all I need to do is get there and back! I fret that my lack of mobility will stop my sons from having a fun holiday, esp when it's just my youngest and me... My budget prob won't allow the purchase of a scooter for some time yet... I keep dreaming of a 'cure'... I guess I'm not even at the point you were when you bought your GoGo, Seenie (and I have a little Toyota too!)... Sometimes I think my reluctance to be disabled is my biggest disability...
Of course we're all reluctant to be disabled, and we hate not being able to do everything ourselves. But when my disease damage (or process or treatment) starts determining what I can do, I rebel. I may have PsA, but it doesn't have me. Still, when I get on my scooter I think "ugh". I hate having to ride. I hate having to think out and organize how I will be mobile when I used to be able to ... well ... just go. I hate that my husband has to work around my mobility issues. I told him that the other day, and he said that it was much easier now, with my scooter(s) than it was in my "tired" days when I didn't want to go anywhere or do anything. Hey, now that was an obvious insight, but it did make me think. I guess I should be grateful that I can have a scooter to use when we go places. And we do go places. And really, I am very grateful.
If I were considering a scooter now, I'd be looking seriously at the used market. With a small spend, you can figure out to what degree the scooter improves your quality of life, and what features are important. Maybe after a trial run (or after your treatment renders you good as new) you'll decide that you'd rather have some other kind of aid. And you will certainly have a sense of what works for you and your lifestyle. I noticed quite a few really good buys on eBay.co.uk (and I really liked this guy's selection).
Flow, something else you might consider taking with you on your trip is a rollator with a seat. Borrow mine if you want. You can use it for carrying your gear (especially helpful if your hands or shoulders ache), and with it, you always have a seat with you. The other advantage of having any kind of an aid with you is that it indicates that you need some consideration. OK, I know, I don't want to draw attention to myself either, nor do I want special treatment. But the truth is that, with PsA and joint damage, I need a bit of consideration. One of the ways I look at it is this: seeing my aid gives others who want to be helpful the opportunity to do so. That makes them feel good, and it gives me the opportunity to connect with them briefly, if only to thank them, perhaps chat briefly, and to smile. I like helping people (can you tell?)and this is my way of reaching out. I know there are others who love to help others as well. My Mother was one. Being open about my need for a seat/help with a door/ reaching for something on a high shelf, by using an aid allows me to make their day, and them to make mine. There. If you look at it that way, it feels different, doesn't it?
Note: if you read this post before, I took a chunk out. It was OT, and the moderator in me made me do it. :-)
Seenie you are a good writer were you an English or Literary teacher? The can not are sometimes hard. The tastings, sushi, and hiking are my biggest things I think about missing ou on. I do try to think of the cans. The scooters make me able to still work right now and for that I am glad. Though I do not know if I will make it as long as I need to in order to reach 80 percent retirement. I am also not drinking with methotrexate not worth the liver consequences. Thank you for all the hope to travel to wonderful places despite this disease.
Thanks, Scienceteach, you've made me blush. No, I taught food prep, home ec, sociology, some history. I even had one (only one, thank goodness) gig in science -- a nightmare, and I learned way more than the kids did. Also did quite a lot of counselling, and some admin.
You're in the gap, Scienceteach. Don't think about anything long term, because you have no way of knowing how you will feel when you get this monster of a disease under control. I'm impressed that you are continuing to work. Your school(s) must be quite accessible.
I wrote a long post last night about whether I could have an electric fun scooter with a Chopper saddle instead of a mobility scooter, then lost it! Maybe just as well… Even a cheap second-hand mobility thing is several hundred pounds, and I can’t see anything that would really meet my needs for less than a grand and a half, which is more than a month’s wages! But I am looking…
I’m ‘in the gap’ too, Seenie. Only 2 doses of MTX so far, and no consultation yet with any rheumy who knows more about PsA than I do, which isn’t saying much…
P.S. What’s ‘OT’?
Scienceteach, I have kayaked. I had my hip replaced less than 2 years ago, and the getting in and out bit of kayaking is difficult now, especially in waves. I have needed a hand. I don’t think I’d want to go in a sit-IN kayak again (yet?) but a sit-ON one is fine. And I admit I have only tried a single person kayak once since surgery, for a short time. I prefer a double with one of my sons, so I can rest or just stop paddling for a moment if I need to. But it is fantastic to be able to cover distances I can’t manage on land, and fun too!