I learned in hospital that all strokes are different. which doesn't make it easy to give generally useful advice. That having been said, I'm going to try, anyway. I have near hemi-paresis on my formerly dominant side (in other words, I'm nearly paralyzed on the side I used to write with), and dysphagia (difficulty swallowing), along with various less-common symptoms all resulting from my stroke, so I have some hope that these tips might be helpful to others. Follow them at your own risk -- I'm not a doctor, and I don't even play one on TV!
I'm at home now, and that (for me) makes all the difference in the world. I'm lucky to have a kind-hearted, cheerful, and loving wife who has made the overwhelming (and unanticipated) effort to learn to care for me. We have 3 wonderful children, too: two are adult sons who live with us, and the youngest is our daughter, who is away at university. I had the great good fortune of doing research at an outstanding university for my entire working life (so far, at least), where I met many friends and worked with one of the most remarkable men I have ever known; among much else, he is a physician and took care of me when I needed it most. At home, I am surrounded by the rich memories of the charmed life I led. Few, if any, of my readers will have lived as I have, but I hope that some of what I've learned will benefit you, too. In any event, I can't take it with me!
I did things for myself all the time, and my aim now is to do as much as I can. Yours may be different. That's OK --- you've earned a breather if you spent the rest of your life working hard. These tips may still help, but keep in mind that they come from someone who wants to do things for himself. There are easier solutions to many of my problems, and it should never be a source of embarrassment to use them if needed.
Our 1999 Toyota Sienna was approaching 300,000 miles when it broke down for what we decided would be its last time. We replaced it with a like-new 2009 Sienna, with an expanded glove compartment that made it difficult to put me in the front passenger seat. We had tried a new Sienna with a Toyota-installed lifting seat that I liked (although my 6' 5" friend didn't, complaining about the lack of headroom; I'm 6' 2" myself), but Toyota was recalling new Siennas and we decided not to wait. My wife arranged for Toyota's lifting seat, made by Bruno, to be installed in place of the middle row passenger seat in our Sienna. What a present!
While in hospital, a problem was keeping track of my stuff: glasses, eyepatch, Kindle, charger for Kindle, music player, speaker, etc. My practical wife (Did I mention that she's practical? It's true.) taped a cookie tin to the bedside table. Problem solved. The trouble was that her solution was too popular. Bandages, tissues, and tubes of mysterious ointments, placed there by well-meaning but clueless (as to its intended purpose) passers-by, began to cover and overwhelm my stuff. Since I couldn't raise my head enough to peer into the tin, it became a place for odd things, some of which were squishy and gross.
At home, I had a similar need to keep my stuff separate from everything else in the house, but I had less of it to keep track of because some of it already had places. The solution was the InterDesign Formbu Vanity, Tank Top Tray, Natural Bamboo from Amazon. It has vertical sides like the tin, but they are clear, unlike the tin. I didn't tape it to the bedside dresser; rather, I laid Dycem (see below) beneath, so it won't slide.
People have needs. Your caregiver is a person. You cannot expect any person to be available at all times, on all days -- there may be an illness in the family, or a need for a holiday, either of which may be extended. On the other hand, your own needs don't get interrupted. What to do? How can you behave humanely?
I believe the solution is to train two or more caregivers, and let them practice continuously, so that (ideally) one is ready when the other cannot be available. Let them know what you plan, and ask them to tell you as early as possible about their expected absences. This obviously won't work all the time, so prepare instructions for your care in advance if your needs are at all unusual. In a pinch, you can usually find a local caregiver using Google. Temporary caregivers may be more expensive and less flexible than those who know you well; understand that they are people, too, doing work that is often dangerous and unpleasant for them. Often their agencies collect the bulk of the fees you pay, and they may receive low wages for what they do.
I think this is obvious, but in case anyone misses it: I like Amazon. A lot. Yes, I'd like to do more to support local businesses (and you should, too, if you can), but I'm hugely grateful to be able to find almost anything there easily via my computer, to compare it with things I often haven't heard of, to buy things at reasonable prices with just one credit card, and to have them delivered within a day or two. For me, Amazon Prime ($100/year) is worth it because I'm not charged otherwise for all those speedy deliveries.
All is not perfect, however. I can't open most packages myself (especially not those infinitely sticky bubble-wrap envelopes so beloved of Amazon). I can only occasionally get Alexa's attention by shouting at her (she doesn't like my gravelly voice), and sometimes deliveries need three or more days. Still, I'm glad Amazon is there.
In some ways, the most difficult thing for me to get used to after a stroke is knowing that dozens, maybe hundreds, of insignificant things I used to do for myself daily, -- like flipping a switch, opening a jar, bottle, or envelope, or tightening a screw -- have suddenly become significant, because now I need to ask (and often patiently wait for) someone else to do them. This doesn't come easily, because I'm used to doing things a certain way, it often hurts to talk, and I frequently have to repeat myself to be understood. These tips are a collection of ways to live a happy life after a stroke, even if you're curmudgeonly like me.
Not all of my great ideas work. To save you time, effort, and money, this section lists a few of them that didn't pan out. Think of what follows as a set of anti-tips. Avoid them!
I tried several ways of attaching my Kindle to my wheelchair before finding one that worked (see below). Some that didn't are:
A whole class of similar, overpriced gadgets turned out to be worthless to me for amplifying my very quiet speech. Ultimately, I found a solution (see below).
The major disappointment was the Amazon Echo. I hoped it would allow me to control a host of uncontrollable things around the house, but I discovered it couldn't hear me speak its wake word, needed to get its attention to do anything useful. It wasn't a total loss, however, as my wife quickly learned how to ask Alexa for the local weather whenever she (my wife, that is) headed out. Eventually, I figured out how to use the button atop the Echo to bypass the wake word, and to ask for news with moderate success (seemingly, the wake word must be loud; the rest can be quieter).
A common problem that occurs with stroke is contracture. Muscles shorten with atrophy, the flexors (those that act to curl up) more than the extensors (those that counteract the flexors). The result is that the affected limb(s) tend to become difficult or impossible to straighten. Consult your physician or OT for advice about contracture before it occurs -- there are inexpensive treatments, but they vary, so I can't give general advice about contracture.
I used to floss my teeth, which requires two hands; now I use a Proxi-Brush, a slender replaceable brush atop a slender handle, which works at least as well and needs only one hand. It was given to me by my former dental hygienist. (Another solution, which I haven't tried, is the single-use flossers that look like miniature swords, with a short length of floss across the 'handle.')
Did I just say 'former?' I did, but I was happy there. The problem is that in cities such as the one where I live, it's unusual for a dentist to have an office on the ground floor, or in a building with an elevator. If this is also your problem, unfortunately you may need to find a new dentist. Many dental chains have accessible offices in strip malls (shopping centers).
Get a hospital bed with a wired remote. That way, you won't always be losing it (unless, like me, you keep dropping it on the floor and someone helpfully kicks it under the bed, which brings us to my next tip).
If you would like to have the wired remote handy, attach its wire to the top of the bed rail with a cable tie and trim off any excess cable tie; avoid leaving sharp edges and nicking the wire.
Before the wired remote comes loose, fortify it and its interior connections with electrical tape as needed. Repeat as necessary.
If you have a choice, get a bed that has a motor that raises and lowers the entire mattress without bending it. The alternative is a difficult-to-operate manual crank. This feature is more likely to be of interest to caregiver(s) rather than user(s).
If you're over 6', you'll need a mattress extender so that your feet aren't cramped by the footboard. Order one, they'll tell you it's back-ordered, and that it will be delivered soon. It won't be (I write four years later). My 6' 5" friend found one he likes from IKEA; I've achieved much the same level of comfort and elegance using a pillow atop an empty pillow-sized Amazon box. Forget extra-long mattresses for hospital beds; you'll get a blank stare if you ask for one.
Remember that transfers should go toward your stronger side, so arrange your bedroom appropriately. The wheelchair will need to be turned around at least once for each pair of transfers, so leave some empty space for that. Your caregiver(s) will thank you later.
If your area has frequent power outages, get an uninterruptible power supply of the sort widely sold for computers. A suitable UPS should cost about $50, plus the cost of replacing its battery every few years. Plug your bed's motor into it, and plug the UPS into the wall. Otherwise, don't ever leave your mattress bent. You have been warned.
My resourceful wife attached her (futon) bed to my hospital bed using more cable ties, which she replaces when, occasionally, they break. She raised her bed to the level of mine using bed risers. Ahhh, bliss! (for me, at least) Since the rails are mounted independently, she left off the one between our beds. She's much nicer than a rail would be, anyway.
A shower chair, for the benefit of anyone who doesn't know, is a waterproof chair that fits in the shower, useful to those who can stand for short periods by holding a grab bar installed next to the shower head. My wife carefully measured our shower stall and ordered a chair that would fit. When delivered, however, the design had been "improved" by the manufacturer so that the back was curved rather than flat, as shown on-line. It was 4"/10 cm too deep to fit in our shower. The seller would not exchange the back only. Fortunately, my wife had chosen a chair made with a frame of standard PVC pipe, so she bought the missing parts, cut to fit, at our local Home Depot. The result was exactly what we had wanted!
If your hobby involves small things, they will end up on the floor. (There must be a universal law of this ....) If, like mine, your hobby involves LEGO, this tip is sure-fire; it may work with other small things, too, but YMMV. Dycem is amazing stuff, beloved of OTs and their butter-fingered patients (I put myself in that group) everywhere. It's rubbery, but even higher in friction. Get a piece large enough to fit beneath your project. Get more than you think you'll need. Amazon has a variety of sizes, at prices that seem too high until you've tried it.
If your hobby was painting or drawing, you will need to learn it again if your dominant hand was affected by your stroke. Marker pens are a particularly poor choice of medium; I spent much of my time capping and uncapping pens until I realized this, and I had a many-colored hand to show for my efforts. Colored pencils are a better choice if you have only one usable hand. Avoid round pencils; they roll, even on Dycem. Hexagonal ones, such as the expensive Caran d'Ache (Supracolor) or Berol (Prismacolor), cause less frustration. Some means of sharpening the pencils is a must, and most sharpeners require two hands. A simple solution, which may work best, is to tape a sheet of medium-grit sandpaper to any convenient, stable surface. Another solution is an electric sharpener, but you won't be able to get a spade point (or with some sharpeners intended to be child-safe, anything but a blunt "point"), so choose yours carefully. Battery-powered sharpeners are portable wherever you would like, but may be underpowered. My thoughtful wife gave me one that makes a proper, sharp point, the X-Acto XLR which requires AC (from an art supply store; also available from Amazon for $$20). An excellent cordless alternative from Amazon is the Jarlink ($21) which runs on 4 AA cells (not included), USB (which obviously requires a cord, which is included, or AC (via a USB adapter, which is included), Give some thought to keeping whatever you choose immobile. The Jarlink fits neatly on a Dycem coaster. The Spanish artist Joan Miró famously made collages when he was unable to paint. Don't abandon art because the old methods no longer work for you! Rather, become fluent in what is accessible to you.
Replace your computer mouse with a trackball. The huge advantage of trackballs is that placing the cursor is independent of clicking, so you won't carefully choose a place for the cursor and then click on some random location anyway. I like the trackballs made by Logitech, especially the M570 (Caution: for use by the right hand only. I 've never found a left-handed trackball, so you'll probably end up with a symmetrical trackball if your left hand is the good one.), but really any trackball you can use is better than any mouse if you have any trace of a tremor in your good hand.
I really like to read, and I finally have time for it. There are several problems with books, though, most of which are easy enough to ignore if you are able to use both hands. One is that they're heavy, individually (as I learned by dropping them unintentionally) and in aggregate (I traveled everywhere with a box or suitcase full of books). Turning one, and only one, page at a time can be difficult. Some books, especially perfect-bound, close themselves unless held open.
Amazon sells a cheap gadget called the Thumb Thing that elegantly solves this problem. Put the thumb of your better hand through its central ring, and its two "wings" hold even a stubborn book open. If you have limited use of the affected hand, you might try the Thumb Thing there, and reserve your better hand for page-turning. It comes in four ring sizes, for a variety of thumbs, and two book sizes, small and any. They're about a dollar each in packs of five. Buy a pack and give the extras to four frustrated friends. Or keep 'em yourself, if you're prone to losing small items such as a Thumb Thing.
Probably you've guessed where I'm going with this rant about the shortcomings of physical books.
Get yourself an e-book reader, such as ... the Amazon Kindle. I've tried many of them over the years, and I find their touch screens (particularly when coupled with narrow bezels) to be an annoyance. There just isn't any place where it's safe to hold them without triggering a page turn or some other function, so I was happy to see the Kindle Oasis 2, which can be held comfortably in either hand, with wide bezels and physical page-turn buttons (although some functions can be accessed only using the touch screen, which can be temporarily disabled from the setup menu until the next time it's powered on). It's expensive, though (about $250; prices vary with options), so it may not be right for you. Another nice thing about getting a Kindle is that there's a huge number of (new and old) books available for it from Amazon, and a large set of freely available public-domain classics readable on Kindles and other ebook readers from Project Gutenberg and other sources. Finally, Amazon has developed free apps for reading Kindle ebooks on web browsers, iPads, iPhones, and Android tablets and phones.
I had Samsung and Google smartphones but gave them up because I couldn't afford to drop them, and because of the ubiquitous touch screens (see above for rant). I now have a dumbphone, an unlocked Samsung Rugby 2 ruggedized flip phone, which I can (and do) drop often. I took my phone and the old one to a T-Mobile store, and the salesperson copied my contacts, etc. from the old SIM to the new one he sold me (the SIM in the Rugby is of a different type than the old one) in a few minutes. No problem, and now I can run over my phone with an armored personnel carrier, or so they say.
At the rehab center where I stayed for a while after my stroke, I was given a walker with an armrest for my affected arm, with a padded grip for the hand. Ask about getting one of these -- an ordinary walker is probably unsafe and unusable if you've had a stroke.
My wife had a pair of grab bars installed so that they face each other, on the narrowest part of a door frame, about midway between floor and ceiling, for me to practice standing and then staying upright. (The door still closes since the bars don't block it.) This is a great thing to have since otherwise I might sit without interruption all day long. If you get one, be sure to specify grab bars (towel rods, closet poles, and the like are not strong enough) and get a qualified installer to put them in (you are risking your life otherwise). You will want someone ready and able to catch you in front, and your chair (with brakes set, of course) behind you, gently touching the calves while you stand (so you are always aware of where you can sit safely). Placing the bars so they face a mirror is a good idea, so you can check posture as you stand. The trick is to place your feet correctly before standing, typically slightly behind the point of contact with the bars, so that when standing you are roughly vertical (leaning neither forward nor backward) with feet spread widely (or braced by the door frame) for stability. You should not be standing on a threshold or any sort of raised surface; this can be dangerous. Get the advice of a PT before using this tip! Thanks to Margie Anderson for this idea; any fault in the description is mine, not hers.
Our ingenious handyman figured out how to install wooden rails in our hallway so I can propel myself through it. He finished them nicely, so I wouldn't get splinters from them, and gave them to me.
My brother-in-law gave me both types of exercise machines used by the rehab center in its gym. They were generous gifts. The first is a Monark 881E, made by the Swedish company famed for its fixed-gear racing bikes. The machine consists of a pair of cranks separated by an encased flywheel, with an adjustable belt around the flywheel providing drag; an optional table brings the apparatus to waist height so the cranks can be turned by hand (as I do; without the table, the cranks can be pedaled, which I haven't tried). On top, an indicator displays speed in revolutions per minute, total revolutions, and elapsed time (a few seconds after the cranks stop, so does the timer). This machine is excellent for arm exercise and to stretch the affected arm, and, since I can roll up to it in my chair without assistance, I use it often.
The other exercise machine is a NuStep T4r recumbent cross-trainer. Using it is like cross-country skiing while sitting. It allows me to strengthen both arms and both legs at once, while stretching the affected arm and leg. The seat turns for transfers, and is adjustable for leg length. The work load can be set using a seat-mounted control. The "poles" adjust separately for each arm. Directly in front is a display showing speed in steps per minute, total steps, and elapsed time (and much more). I recommend the NuStep highly to anyone who can master the required transfers.
The first question that often comes up about wheelchairs is: are you interested in a powered chair? If so, know that they are much heavier than non-powered chairs, hence more difficult to load into a car. I had one for a week during a cruise (see below), and several times at supermarkets, with occasionally hilarious (to me, at least!) results. I suspect that using one regularly would hasten muscle atrophy, but I have no evidence of that. What really made up my mind, combined with loading difficulty, is those hilarious experiences I had.
Simply put, stroke has slowed my reactions (not, so far as I can tell, my thought processes). The Commonwealth was right to take away my driver's license. I should not be behind the wheel of a car, or it turns out, a power chair, unless it is moving very slowly. I have no problem with this.
So the advice I offer on power chairs is: if you think you need one, go stay in someone else's house (so you won't wreck your own) while you rent one for a few days to see what it's like. Ideally, someone else should either live in a dump or not be a close friend.
If you've decided like me to go with a manual chair, the next questions will probably relate to the dimensions of the chair. Ask your PT for advice. Without significant structural alterations, you won't be able to steer a chair of 19" seat width or more through your house's doorways. You don't want a chair to be too narrow to sit in comfortably, though.
The other important dimension is the height of the seat, which was recommended to me to be 19", just high enough so I found it almost impossible to pick up small dropped objects. I don't think this was deliberate, but you should discuss this with whoever advises you. You don't want to get your foot stuck beneath a chair -- this is dangerous not only because you can injure a foot or leg, but also because you can flip yourself out of the chair. This danger increases if the seat height decreases.
Also significant is the weight of the chair, which can range between 17 lbs. (for the super-light chairs favored by racers) and 100 lbs. or more (steel frame chairs of the types you are likely to find in hospital). Notably, these specified weights are for chairs without wheels, which add more pounds that you (or someone else) has to push.
Another question to consider is: do you want footrests? In most cases, chairs come with removable footrests, so this is not usually a purchase decision. Rather, the decision needs to be made each time for long outings, when it may become uncomfortable to keep feet off the ground for extended periods. This is a nontrivial issue for those who have only one usable hand for pushing the wheels, since the chair in this case goes in circles (the wheels aren't connected), so steering by the occupant of the chair is possible only with the feet, and footrests often make this impossible. My opinion, and it is only an opinion, is that most of the time, I want to steer; I don't want to be driven.
Make sure that the brakes work and that you can use them, and do use them! Well-meaning caregivers may not believe it is possible or necessary for wheelchair users to operate brakes, so explain this point carefully. This is a serious safety issue with all wheelchairs, particularly if you go over anything that is not level. Keep your hands away from the brakes while the chair is moving (in fact it's safest to keep your arms and hands on or inside the armrests whenever someone else is pushing the chair).
After using a steel-framed behemoth of a chair for a couple of years, I got a Karman S Ergo alumin(i)um-frame chair with fully rotating wheels. (Well, in fairness, the old one had fully rotating wheels too, but it began losing parts at an alarming rate and I worried it would fall apart with me in it.) The lightweight Karman chair is roughly a third of the weight of the old Bulgemobile, and its wheels turn more smoothly. I had it made an inch narrower than the old one, which made it easier to navigate through doorways, and an inch shorter, which makes it easier to pick up things I drop but also easier to catch my feet under the chair when I'm not using footrests (which is almost always). It's necessary to use the Karman's brakes in some cases in which I would not have bothered previously (such as while eating or reading), because its light weight and smoothly rolling wheels make it feel unstable otherwise.
One of my repeated complaints about wheelchairs is that their designers always seem to assume that their users never have anything to carry, such as a mobile phone for emergencies, or even a pencil or a tissue. So several of my tips relate to carrying things.
It seems not be blindingly obvious why you would want to carry things such as glasses, tools, reading material, or keys from one place to another, so I'll try to make it clear: unless you've been in a chair since birth (and many have), you're probably used to carrying things. Sometimes, you don't want to ask your caregiver to bring all of life's comforts with you. (Maybe that was a cry for restored independence.)
You can fit a small or flat unbreakable item between your back and the seat. This works much better, I've found, than putting stuff between your side and the armrest, which seems to be a quick route to the floor.
Why not carry stuff in pockets?, I hear you ask. Have you seen what sort of clothes we wheelchair users wear? Have you ever found any with functional pockets? No, seriously, I'd like to know.
Failing that, a reasonable idea is to put pockets on wheelchairs. Amazon sells zippered pouches that can be attached to the frame of a chair with velcro straps. I suggest hanging one from the outboard side of the rest for the better arm -- that way, it's not sharing space with you inside the chair, and there's a reasonable chance that you'll be able to reach it.
Speaking of wheelchair frames, there's no law requiring them to be made with no flat surfaces, but I've never found one that has any. This can be a problem when trying to mount something rigidly onto the chair. My fearless and clever wife (Did I mention that? She's fearless and clever.) attached a gooseneck iThing holder from Amazon (AboveTEK model DH-74C, which ends with a clamp requiring a shelf) by splitting a block of wood and whittling a groove in it to fit my chair's frame. The AboveTEK gadget comes with three interchangeable holders for smartphones, Kindles, and tablets. I've tried mine using the medium holder for the iPad mini; usually, it holds the 7" Kindle Oasis, which it does securely and without wobbling.
If your home is entered using steps, you will need a ramp for your chair. Even if you don't plan to go out (but, really, you'll want to), there are always doctor and hospital visits, and being able to leave is a safety issue, too. You'll need about 10' of ramp per step, more if feasible. (Keep in mind that you will need to be pushed up the ramp, in your chair, and lowered down, by someone probably not possessing superhuman strength, and ideally this experience should not be hair-raising.) Ramps are not inexpensive -- allow about $1000 per step for a safe one. I was very fortunate to have a custom ramp designed and built by a family friend and our son. At this writing, the ramp has survived four New England winters.
Stand-and-pivot transfers became increasingly difficult for my wife after several years, so we got a Sure-Hands Hoyer lift for transfers. (I had tried conventional sling-type Hoyers and found them very slow, uncomfortable in the crotch, and the sling didn't fit well in my wheelchair after the transfer and did not permit an upright position.) The Sure-Hands lifts are not for everyone, as the salesman quickly pointed out; specifically, since the device works by grabbing onto the rib cage, it's not suitable for those with osteoporosis or "brittle bones". They are also quite costly and not covered by insurance. See https://www.surehands.com.
If you're like me, you'll probably spend a lot of time studying your bedroom's ceiling. If it has any features at all, you will be able to describe them with your eyes closed. For me, an annoying feature was the glare of the ceiling light, and of the light in the adjacent hallway, visible if my room's door is open. Fortunately, this bothered me long ago -- so I had replaced the direct ceiling lights with indirect ones, and installed a dimmer switch in the bedroom. (I now wish I had put a dimmer in the hall, too.) Problem almost solved. If you're bothered by glare from ceiling lights, replace them! If you have a better idea (such as a lampshade, which might be cheaper), please let me know about it.
I've had a slew of swallowing and language therapists (SLTs), and most of them told me my speech was fine and wouldn't it be better to concentrate on swallowing? Maybe it's just me, but I don't like my voice (it's much more nasal than it used to be, and I miss singing, humming, and whistling, but I can still whine, can't I?), talking hurts, and often I have to repeat myself to be understood. I also had a problem with low speech volume. I'm lucky enough to be able to string together a sequence of words into a sentence, but if no one can hear or understand that sentence, I need to improve my speech.
After near-disaster with a loaned portable, wired PA system (see above), I looked for a wireless version of the same thing, having been advised that a lavalier mike wouldn't solve the problem. What I found was unexpected: the VERKB Bluetooth Wireless Microphones, 3-in-1 Portable Karaoke Player from Amazon -- a gadget that looks like a flashlight (torch). It costs about a third as much as the cheapest of the PAs and is more than loud enough for me (I wanted to be heard across a dinner table). It is a single component with no external wires (yaaay!). While I was using it (ultimately, I had surgery to correct the volume problem), I kept it in a pouch attached to my chair, so it would (almost) always be at hand. Nowadays, it's in the cup holder nearest my lifting seat in the car, because I'm likeliest to use it in the car.
I paired the topics of speech and safety because one of the basic functions of speech is to call for help. Especially when I couldn't produce much volume, I needed to be able to attract attention reliably to get help when I needed it. Your solution may be able to make use of something simple like a bell, but I wanted to avoid inflicting anything that might be perceived as demeaning on my family, so I chose wireless intercoms including alert tones as the solution. There are many models available from Amazon.
My first tip here is: If you have a beard, drink with a straw. Some swallowing experts avoid straws, presumably because they've never had patients with beards. The real disadvantage of straws is that the size of the sip is not easily limited, so be careful about taking too big a gulp. As always, practice with sterile water before any change in drinking (your lungs can harmlessly, though with some discomfort due to coughing, absorb it if you aspirate some).
Thickeners come in two main types: cornstarch-based (yecch) and xanthan gum-based (less yukky). These are my opinions; YMMV. The liquid xanthan gum-based stuff is vile, however (it tastes sulfurous, probably because of a preservative). The xanthan gum-based powder (Nestle Resource Thicken Up CLEAR brand in cans) is tolerable and relatively cheap. (It is also available in outrageously expensive single use packets. Note that Thicken Up WHITE is cornstarch-based; you'll want Thicken Up CLEAR if your taste is like mine.) All of the powders work better if you follow the instructions; specifically, add liquid over powder, not the other way round. It usually helps to add just a small amount of liquid first, to make a paste, then to add the rest of the liquid and mix.
Forget about carbonated and alcoholic drinks if you need thickener, which doesn't behave usefully with bubbles (although the combination might be a good science fair project) and wine, at least, is abominable when thickened. Please let me know if you discover a palatable mix of thickener and an alcoholic drink. Water is OK (I used to drink it a lot), but thickened water is mucus-like; I like iced tea or fruit juice better now. Coca-Cola lovers will probably like mixing cold cola syrup with cold still water and thickener. A syrup I enjoy is Real Sugar Soda Brand Classic Cane Sugar Cola Syrup (keep this away from others in your family if you want any), available from Amazon. True to their name, these folks don't use corn syrup, so the product tastes like flat Mexican Coke. (That's a compliment. BTW, I've tried flattening soda in the fridge; even after several weeks, microbubbles persist and interfere with thickener.) A few other suggestions (try thickening any that sound appealing): Yoo-Hoo!, the chocolate energy drink; pina colada mix; mango lassi (you can find quick recipes online, or get it in half-gallon milk cartons at a good Indian grocery if there's one nearby); Hi-C (or other non-carbonated) orange drink; limeade. All of these are disgustingly sweet; my theory is that if I have to spend time drinking it, then it might as well provide some calories. If that's not your theory, you may want to look for another list.
I will avoid mentioning specific foods here, because it's such a matter of personal preference. One exception, though, is Greek (strained) yogurt, because I had somehow missed it until I tried it in desperation in hospital. It's about the consistency of sour cream and tastes great, easily the best food if you have dysphagia. My favorite is Fage 2% or Total (whole milk), because of the creaminess and the fruit. If you're worried about butterfat, you can get 0% (skim milk) Fage and still enjoy the fruit.
My family and I have spent a week every summer for many years (except for 2014) at a camp in the White Mountains. Most of the camp guests, including all of my family, have lightweight but nearly indestructible plastic mugs that we reuse. The mugs remind me of friends and a place I love, and they don't break when I drop them. I use them daily.
A vertical-sided plate is good to have at meals, because the corners give me a place to chase and spear runaway food. My wife gave me bento boxes from Japan, which I often use for lunch; these also have vertical sides. For finger foods such as sandwiches, I often prefer an inexpensive plastic cutting board we found at IKEA.
Soup has been a continuing problem: though I've always liked it, I couldn't keep it in a spoon between bowl and mouth. Recently, I enjoyed a soup that had been thickened first, and it stayed in the spoon, so there's hope.
For almost all meals, I wear a bib. (I learned that, if I don't, I'm likelier to wear my meal than to eat it.) Velcro-closed terrycloth bibs are widely available in adult sizes. (A stretchy head opening might work better, since velcro can loosen and bibs with snaps still need two hands to put on. If you find a source for these in adult sizes, please let me know.) Be sure you have enough of them, and don't leave home without one, even if you don't expect to eat.
A class of assistive devices I've not investigated has been the specialized forks and spoons (and, I suppose, knives) sold for folks with disabilities. Certainly try these if you need them, but I have no experience with them, so I can't offer advice. The one thing I will say is that you are unlikely to find them anywhere except at home, so if you expect to eat elsewhere, be sure beforehand that you can be adequately nourished using standard forks and spoons, and expect to use and to eat what's given to you. Sorry if this sounds harsh, but I've learned that I can adjust to the rest of the world more readily than vice versa.
If, like me, you used to enjoy spicy foods but have spent a while in hospital eating bland foods, you may be surprised, as I was, to find that your tolerance for heat has diminished. Mine required nearly a year to restore, partially.
I recently had the experience of attending our daughter's commencement ceremony at the University of Arizona in Tucson. It was the first time I'd flown since having a stroke, so I have much advice to offer. First, it is likely to be very difficult for your caregiver (in my case, my indefatigable wife. Did I mention that she's indefatigable? She is.) and for you. Second, it is likely to be quite expensive, especially if you are accustomed (as we were) to rock-bottom budget prices. Third, it requires a long and careful period of planning. Gone are our carefree days, when my wife and I would toss a few items into a bag, reasoning that anything we had forgotten would be available at our destination. (That's still true, I firmly believe; what's different is that I'm less willing to begin an adventure looking for a windbreaker now.) For these reasons, don't casually contemplate flying if you've had a stroke.
What's more, plane travel is implicated as a cause of leg clots, which can become loose and travel to the brain, particularly if the interatrial septum is perforated (commonly known as "a hole in the heart"); flying is discouraged for thromboembolic (but not hemorrhagic) stroke survivors for this reason.
My wife's brother lives conveniently near Phoenix, about two hours' drive from Tucson. Cleverly, she ordered most of my disposable items, and a heavy item (a portable bed rail, see below) to be delivered to her brother several days ahead of our arrival (in time to correct problems; fortunately, we had none). The cost of shipping the bed rail twice, cross-country, paid for a new one.
We had a choice of two routes from Boston to Phoenix. One, which we had taken before, required changing planes in Chicago. The other, which we had previously avoided because of cost, flew nonstop. My wife, reasoning that it would be needlessly difficult and time-consuming to get me off one plane, across O'Hare, through security, and onto another plane, chose the nonstop. (If you must change planes, allow at least two-and-a-half hours, plus time for a bathroom break. The airline may try to convince you that you won't need that much time, particularly if the second plane leaves from the same gate where the first one arrives. Do they guarantee that? Use your judgement, but be sensible.) My wife also chose to get us first-class tickets, making the trip far more expensive. For my part, I enjoyed every minute and I am grateful for her foresight and generosity. If you are of smaller-than-average size, an aisle economy seat may work for you, but it will be worth looking for extra leg room if you approach average size. Keep in mind that passengers who use wheelchairs won't be seated in exit rows, and that bulkhead seats may have less leg room than average. Try SeatGuru to find seats.
Two friends from camp invited my wife and me to share their vacation, which was a cruise to the Maritimes from Boston, which is, for us, a short drive from home. It was remarkably kind of them to think of us. Our ship would call at Bar Harbor in Maine (which, lacking a harbor deep enough, required us to anchor off-shore and transfer to a tender, something I would be unable to do), Saint John in New Brunswick, and Halifax in Nova Scotia (both navigable ports; I would be able to disembark). We had visited all three cities many years ago, and I was eager to return. My brave wife (Did I mention she is brave? She is brave, and lovely too.) agreed to face her motion, errr, sensitivity and the hard work of a trip with me -- I hope it has been long enough for her to remember only the good parts, but I'm worried that it's not.
Our friends tried to reassure us that a cruise is the easiest trip to take for a wheelchair user, and I think they're right. My preternaturally clever wife (Did I mention that she is preternaturally clever? Well, she is.) called the ship using the ship-to-shore telephone system, backwards, before booking a wheelchair-accessible cabin to find out which ones were laid out properly for me.
My wife rented a power wheelchair for me (so I could cover more ground and to make it less work for both of us); the rental company delivered it to our cabin, so it was waiting for us before we left. She also rented a portable bed rail, which we used for transfers. There are companies that offer these services in major ports; use Google to find them.
The bed rail worked so well that we bought one for our future travels. I recommend the Drive Medical home bed assist rail and folding bed board combo, which is sturdy, can be used on either side of the bed, is relatively compact, and costs around $70 from Amazon, no tools required. It is also heavy. Avoid the type that rests on the floor -- beds vary in height, and the chances of finding a match are low.
The power chair was a mixed blessing. I certainly saw more, and my wife was less exhausted, than would have been true otherwise. On board, however, I found it frustratingly difficult to navigate through the narrow corridors.
I travel with a comfortable wedge pillow to help breathing. Amazon has a huge variety of these -- get a few of different heights and try them out at home before you go.
Other than these items, of course I take clothes (lots of them, more than I'm used to taking), pills (including a couple of extra days' worth, in case I lose some or the trip takes longer than expected), and my Kindle, charged and preloaded with enough unread books to last the trip. On a trip like the one I described, I needed my passport and a ticket, too. If you have specific brands of grooming or other supplies that you like, take them along, and put things you know you'll want soon in carry-on luggage. (It's less likely to be delayed that way.) Otherwise, keep in mind that people elsewhere need these things, too. Some of your best memories of your trip may be of shopping for them, in stores that may not be visited often by tourists, meeting local people with needs like yours in the process. Like me, you might even learn something from them.
Please write to me (georgebmoody0@gmail.com) if you liked this, or if you have suggestions for making it better. I'll make sure your ideas are credited if I can use them. I can't promise to answer all my email (typing is slow), but thank you.
Last revised: 24 September 2018