August is SMA Pride / Awareness Month, so each week I’m sharing a post about different parts of my life with SMA. You can read my first two posts on my SMA experience over the years, and on learning to deal with my physical limits.
Since I just got back from a trip to Charleston a little over a week ago, travel is still high on my mind. And since we drove to Charleston, what’s also on the top of my mind is everything that I have to bring when I travel. Looking at the sheer amount of things that we fit into our car looks like a game of Tetris where none of the rows ever disappear. So I thought that I’d share the many different things I have to take with me each time I travel, whether it’s for a short weekend trip or a week long one.
Medical Devices I Bring
I thought that I’d start with the obvious ones – the actual medical devices that come with me whenever I travel. I’m going to link to them where I can so you can see what they look like!
This is a cool machine that kind of “mimics” a real cough. It has a mouthpiece attached to a plastic tube and it pushes air in and then sucks it out – basically, exactly what happens when you cough. Since I don’t have great lung capacity, I can’t do a hard cough on my own, so this helps open up my lungs and make sure nothing’s settling in them. I use it a few times a day, mainly in the morning and evening, just for 30 seconds or a minute at a time.
I feel like after COVID, everyone is more aware of what ventilators are now than ever before. But I don’t have to be intubated to use mine – I just use this “nasal pillow” mask and only use it while I’m sleeping. Just like the CoughAssist, the vent helps me get deeper breaths while I’m asleep, which is when our breaths are naturally more shallow. It helps keep my lungs open and helps keep me from getting sick.
I use a feeding tube overnight every night. I’m still able to eat “normally” throughout the day, and I love to eat! But I can’t eat enough to get the nutrition and calories I need to keep my body going, so I use the feeding tube at night as a supplement to what I eat during the day. It’s a pump, so it slowly feeds me some of the formula all night long, and whatever rate I tell it to. And I have to bring a portable IV pole too so that the pump has something to attach to.
Other Assistive Devices
These next few things aren’t medical equipment in the same way that the first three are, but they’re still assistive devices that I absolutely need whenever I travel.
I can sit on a regular toilet – it’s too low to be lifted on and off of, and there’s not enough support, either – and obviously, I need something to sit in when I take a shower, too! I’ve used a few over the years – this one is really portable and easy to travel with, though it’s definitely better as a toilet chair than a shower one. Recently, my sister found this one and we tried it out for this trip – we had to do a few modifications to it ourselves to make it work for us, but it seemed to work pretty well!
I know, I know – this is something that LOTS of people use, disabled or not. But when I sit on my toilet chair, my feet don’t reach the floor anymore, so this is something that I actually need for support. (But also… if you’re not using this at home, what are you doing?!)
Wheelchair Battery Charger
My wheelchair would be very little use to me if I didn’t bring the charger! I charge it every day, overnight, and it lasts a full day on an overnight charge – it actually lasts a little more than a full day, but it’s not worth the risk of being stranded to find out exactly how much more.
Handheld Shower Head
When I’m staying in a hotel, I don’t usually have to worry about this, but in houses I do. Because I sit in the shower, I need a handheld shower head to be able to shower easily! So my dad sometimes has to bring out his toolkit and swap shower heads for the duration of our visit. I bet this is something that not many other people have to think about!
Having my wheelchair break anywhere at anytime is bad enough, having it break when I’m traveling and far from home is much, much worse. And many wheelchair parts don’t work with typical tools – they’re a specific size that only works with the specific tools given. So I always make sure to bring them with me in case of emergency!
Medications and Other Supplies
This section is a bit of a hodgepodge of assorted supplies and medications I have to bring with me.
I actually don’t take that many medications on a daily basis. I take an over the counter allergy pill, a prescription acid reducer, and Miralax every day – these always come with me.
Evrsydi + Ice Packs and Cooler
Then there’s my Evrysdi (SMA medication), which I also take every day. This one is a liquid, though, that has to stay refrigerated, so it’s a little bit trickier to travel with. I have to bring the medication itself in it’s bottle, plus ice packs and a good cooler (I bought this one for this purpose and it works really well) to keep in cold while we’re in transit. And wherever I’m staying has to have at least a minifridge, too. Since most hotels don’t have freezers in the room, we ask the hotel to freeze them the night before we leave so we don’t have to worry about using ice cubes and having them melt while we travel.
Feeding Tube Formula, Bags, and Extension Sets
I mentioned the feeding tube pump and IV pole earlier, but the feeding tube actually requires a lot of other supplies, too. First, there’s obviously the formula itself. It comes in little cartons, and I use 2-3 each night, so depending on how long the trip is, they start to add up! And I need a bag that runs through the pump to pour the formula into for each night (plus a few extras, just in case there’s something wrong with one of them or we have to extend our trip). And then there’s the extension set, adapters, and syringes that let the bag actually attach to my feeding tube button and let me flush it so it doesn’t get clogged.
Gauze and Tape for my Feeding Tube
More feeding tube supplies! I bring gauze (and actually, pantyliners cut into small squares with a slit in them) that go around the feeding tube site and keep my skin dry and protected from any leakage (it is, after all, a hole in my stomach). And then sensitive skin tape, too, to keep the gauze secured to my stomach.
Tubing and Bottle Cleaner Brushes
Both the vent and the cough assist use different tubing sets, so I have to bring the tubing for both machines. And the CoughAssist tubing has to be cleaned out a few times a day, and we use one of those bottle cleaner brushes and dish detergent to really get into the tubing and get it clean.
Okay, final category! These are the things that I need to bring to live comfortably – that I wouldn’t need to bring if I didn’t have SMA – but aren’t really medical in nature.
Pillows and Blanket
I travel with soooo many pillows! Getting comfortable at night requires very specific positioning with pillows of just the right size and fluffiness (it’s a bit of a Princess and the Pea situation). So I always bring my “ear pillow” (if you are a side sleeper I could not recommend this pillow more highly!), and also bring two throw pillows that are exactly the right size and shape for me. I also bring a blanket to sleep with at night, because again, I have specific needs! If a blanket is too heavy, I can’t move my arms while I’m laying down, and so I get “trapped” in uncomfortable positions. So I bring a blanket that I know works – my ChappyWrap!
Extension Cords and Power Strips
Each of the medical devices and the wheelchair charger needs to be plugged in – and hotels / houses usually don’t have that many outlets in the places that I need them! So I always bring power strips and extension cords to make sure that there are enough spaces to plus everything in. And because I use my cell phone in bed as a way to get in contact with my parents while I’m sleeping, I need an extension cord for my phone, too. So lots and lots of cords!
This is a recent addition to the packing list, but something that’s been majorly helpful. Often, whether it’s a hotel or a house, there isn’t enough reachable, wheelchair-height spaces to put things. Bathroom counters are too high for me to do my makeup on, tables are often too small or too high or not in the right location. So I’ve started bringing a tray table (and my sister does, too) so that I have a space I can use and reach easily.
I’m sure there are things that I’m forgetting, but this is the majority of the list. And while I only am mentioning the things that I need, my sister needs lots of these, too – so in many cases, the list is doubled. This is what it’s like to travel in a world that’s not built for you!