Using Technology and Other Strategies to Make Living with GVHD More Manageable
Presenters:
- Leora Comis, MPA, OTR/L, BCPR, CLT-LANA, FAOTA
Senior Occupational Therapist, National Institute of Health Clinical Center - Mark Juckett MD, University of Wisconsin Hospitals and Clinics
This is a recording of a workshop presented at the 2019 GVHD Summit.
Presentation is 42 minutes, followed by 6 minutes of Q&A.
Summary:
Discover adaptive technologies which can help a person with GVHD live an independent life. Areas covered include: toileting, bathing, dressing, personal hygiene, daily activities, cooking, housework, computer use, structural adaptations and getting in and out of bed. Potential sources of devices and how to find an Occupational Therapist are also explored.
Highlights:
- Adaptive or assistive devices enhance a person's ability to maintain or facilitate independence, reduce reliance on caregivers, to be able to do everyday self-care, household or community or leisure activities.
- Medicaid does not include Occupational Therapy in their coverage but private insurance may. If you receive home health services an Occupational Therapist may be able to come to your home.
- Some community organizations and have a lending library or “loaner closet” of devices available for no cost.
Key Points:
02:59 Adaptive devices can compensate for or help you adapt to limited abilities, and to facilitate or promote independence so you're not dependent on your caregivers.
03:41 Adaptive equipment should be tailored to your needs as an individual, and not the other way around.
04:42 Toilets that traditionally have been installed in people's homes are very low. And people who have steroid-induced myopathy or weakness in their legs, restrictions in range of motion, or just pain from AVNs from prolonged steroid use, can have difficulty getting up from the toilet. Fortunately, there are some nice devices out there.
21:44 Technology's really evolved. We now have home monitors, cameras, so that you don't have to get up as often to see who's at the door or to change the temperature of your room. And you can even operate it remotely from your phone.
22:21 Low couches are difficult for many people to get up from. You can buy furniture risers that raise the height of the sofa, making it easier to get up.
32:06 Bed ladders make it easier to get out of bed.
33:12 Seek out an occupational therapist at your transplant center who has the knowledge of adaptive devices that you potentially can trial in the clinic to see if it works.
4:19 Adaptive devices are not necessary all the time. Strive to be independent, but if it really takes so much of your quality of life and time, then it may be more efficient to use devices.
Transcript of Presentation
Introduction of Speaker and Learning Objectives: I’m Leora Comis, and I'm really excited to be here and very honored as well. And I thank the BMT InfoNet for inviting me and look forward to your expertise as patients with GVHD.
So, I'm going to start. This is where I work. It's 350 acres with lots of nice deer and wildlife. So, it's nice and tranquil when I come home from work.
Some disclaimers. I'm an occupational therapist. I'm not here representing any particular company or manufacturer. So, I'm just going to give you a little bit of an idea of the various assistive devices that are out there, but I do not have any affiliation with any one particular product. And I am an Associate Investigator working on some drug trials.
So, my objectives for today are to highlight some of the various adaptive devices that are out there that may enhance a person's ability to maintain or to facilitate their independence, reduce reliance on caregivers, to be able to do everyday self-care, household or community or leisure activities, and to explore or identify some potential resources that can help offset the costs of some of these devices.
So, I'm going to use the term ADLs. It's a lingo, I apologize. I'm a medical provider. ADLs refer to activities of daily living, and there two types. There are the basic activities of daily living, which basically centers around your personal care, how you take of your body, whether it's toileting, dressing, personal hygiene, brushing one's teeth, bathing.
And the second category of ADLs is the instrumental. That refers to activities that center around the home and the community, school, work, leisure. So, a lot of the devices and strategies I'm going to talk about really will focus on one or both of these categories. As I mentioned, the focus is on community.
So, the next category I'm going to talk a little bit about is we're going to go with the basic activities of daily living. And we're very fortunate that assistive devices have really evolved. I'm getting now into 3D printing. So we've really come a long ways from the example of the wheelchair that you see on the far left-hand side of your screen.
02:35 Definition of Assistive/Adaptive Devices: So, what is assistive devices? Basically it can be something that you purchase over the counter or online. It could be something that's been modified by your therapist or by yourself. Or it could be customized, and that's where I talk a little bit about some of the 3D printing that some of us are getting into in occupational therapy.
02:59 Goals of assistive/adaptive devices: So what are the goals of provision of adaptive devices is basically to compensate or to adapt for limited abilities, and to facilitate or promote independence so you're not dependent on your caregivers.
Some other reasons are to improve your quality of life, reduce strain on caregivers, and just promote better self-esteem, self-confidence. So, the overall goal of adaptive devices is to achieve a balance in one's life.
03:41 Adaptive equipment should be tailored to your needs as an individual, and not the other way around. And that's where I see a lot of therapists, my own colleagues, doing the latter where they're just saying, "Okay, just try this." But it's really important to really fit the needs of the person, whether it's the physical abilities, the emotional abilities.
I have patients that are just not into gadgets and just don't want to have anything that stands out or identifies themself as being "different." And also has to be blended in with your own personal values, your environment.
I'm going to talk a little bit about some of these devices, and some of them are big and bulky and you're not going to be able to want it if you travel for your job or for participation in clinical trials, you're not going to want to carry these big and bulky. So, it's really important to look at the environment and the person's own values and needs.
04:42 Toileting Devices: The first category I'm going to talk about is toileting. That's a very important and essential part of everyday self-care. Toileting is very important.
The problem we do have is a lot of the toilets that traditionally have been installed in people's homes are 15 inches off the floor. They're very low. And people who have steroid-induced myopathy or weakness in their legs, restrictions in range of motion, or just pain from AVNs from prolonged steroid use, can have difficulty getting up from the toilet.
So fortunately, there are some nice devices out there. I didn't bring those because they're a little bit heavy. So, this is an example of a bedside commode. So, if a person has extreme difficulty getting into the bathroom quickly enough because they have GI issues associated with GVHD, and they have urgency, maybe just having a bedside commode. And they have some really... not lovely, but something that doesn't look as medicinal out there. They have ones that have a cover to it or like a seat so you can sit on it and it looks like a regular chair, so it's not as evident to be a bedside commode.
This over here on the far right of your screen is an example of a toilet safety frame. It's easy to install. It just clamps onto your screws, or the bolts I should say, on the back of your toilet that holds your toilet seat in place. And then this is an example on top of a raised toilet seat. Now, this is terribly high. They come in different heights from two to four to six inches in height. So, it just makes it a little easier. You're spending less effort to get up and down, so you have that energy saved over for important tasks of everyday life.
Grab bars obviously can be installed. This is a really nice example that I found online that looks very elegant and doesn't look like a grab bar. But it actually is a grab bar, but it's also serving as a toilet paper holder.
So, a number of my patients, because of restrictions in range of motion, have difficulty reaching behind their back to perform perianal care, to clean themselves after moving their bowels. So, some people prefer to use a device, rather than asking their loved one or caregiver to do that for them.
This is an example of the freedom... I'm sorry. I'm ahead of myself. There we go. ...of a freedom wand. This is the freedom wand. Basically, you insert the toilet tissue in here. It has a little easily-controlled thumb. And then you just close it and it reaches behind your back, and then you just drop it into the toilet seat. So for someone who has limited range of motion, that might be a nice device.
I've had patients just use tongs, you know, barbecue tongs or meat tongs. But that works just as fine and it's not nearly as expensive as that. I also tell patients if they have difficulty because of pain back there but they have the reach, they can just use the wet wipes that are easily disposable in the toilet. Just make sure they say "disposable in a toilet." Otherwise, you have to put it in your trash.
08:19 Bathing Devices: So the next category I'm going to talk a little bit about is bathing, another very important basic activities of daily life. Up here is an example of a shower chair. You have to be really careful. If you're putting a shower chair into a tub, I would recommend strongly measure the distance between the inside in terms of the width. Because many shower chairs are 18 inches or wider and that will not fit into most standard tubs. Most standard tubs are about 17, 17 1/4 inches wide, and this particular model will not fit into a shower chair. But there are a number of different models that do. So just measure your, if you're putting it into a shower, if you're putting it into a tub basin.
But if you're putting it into a shower stall, most standard shower stalls are wide enough. They're usually 30 x 30, which will certainly accommodate an 18" wide shower chair.
So, on the bottom right is an example of a transfer tub bench. This is a padded one. I don't recommend, typically, padded because the plastic does break down, particularly after you clean it multiple times with Clorox or bleach or whatever. It does break down. So, if you're not too bony and you can get away without a padded shower chair or tub bench, I would recommend that.
A tub bench is used for someone who can't step into the tub because of limitations in range of motion, weakness, or the tub is exceptionally high. So basically what you do is you sit on one end, you move your bottom over, and then you lift your feet over the tub while you're sitting in the tub. And that fits into most standard tubs. It doesn't fit into the old-fashioned tubs that have claw feet, but most of us don't have those kinds of tubs. Although, they're coming back, which is not good for self-care, for the elderly, or the disabled. But they look pretty.
10:20 Hand-Held Shower Sprays: Anyway, handheld shower sprays. I would really recommend, if you are going to go with one of these, a shower chair or a tub bench, get a handheld shower head so that you can take it off the wall and focus the water on where you want it to go, because the sitting up and down may take a lot of effort.
And I know a lot of my patients say, "I really enjoyed taking a bath, but it was so exhausting." When I say bath, I say bath/shower interchangeably. And so remember that it is a very taxing activity because your body is still working to cool your core temperature down. So after you do take a bath, take a rest break and just recognize that it does take a lot of energy.
So I talked a little bit about handheld shower sprays. There are long-handled sponge brushes out there. I don't recommend the brushes, per se. I do recommend more of a foam. The reason why I don't like the brushes for patients with GVHD is it can be very abrasive where the skin can be very fragile and paper thin, and it can cause abrasions or openings of the skin. So a foam or a loofah may be another route to go. This particular one you can bend with manual dexterity, so you can adjust it to your particular needs.
11:51: Toe washers. A very important area of the body to wash between, particularly if you have edema back there or have peripheral neuropathies. So you want to keep your feet and toes very clean. This is an example of a toe washer, basically it's a terry cloth. I just have patients put it on a dressing stick and wrap a towel over it, another cheaper way of going.
12:17: Use an inspection mirror if you need to, particularly if you have limited range of motion and you can't bend down or it takes too much effort. There are nice, and this is an example on the upper right of a gooseneck, I think that's a gooseneck, yeah that's a gooseneck inspection mirror. You can use those. I did not bring one with me today.
12:37: Grab Bars: And then lastly, which I didn't have a picture of, putting bars on the wall is great if you have a new home. But to put them into an existing home can be very costly. You do need to go professionally because you want to make sure you're putting it into the studs of the wall, or they know professionally how to do it. Don't use the suction-based safety railings because they do disintegrate over time from the humidity. So please do not use them for support.
But you can get, if you're taking a bath or a shower in a tub basin, there are tub clamps, I did not bring an example, that you can just clamp onto your existing tub. They're great, but the problem is if you have a plastic tub, a lot of the people are now putting these retrofit plastic over an existing ceramic tub, it will not work because it will break the tub. But if you have a ceramic or porcelain tub, it works great.
13:37 Assistive devices for getting dressed: Next area is dressing. A lot of my patients with GVHD have difficulties with fine hand dexterity because there may be peripheral neuropathies, or diabetes-related from the steroids, or they just have limitations in range of motion. So handling dressing fasteners can be a real challenge for some people. So there are sock aids that you can put... I recommend the terry cloth sock aid, as opposed to a plastic for patients with GVHD, especially if you have sclerotic or GVHD of the skin. Less abrasive.
And you just put the sock on, really nice device for loose fitting socks. It will not work on compression stockings if you have to wear them or choose to wear them.
Button hooks and zipper pulls. A button hook basically is the device right here on the bottom left of your screen, right over here. And it comes with zipper pulls. They're a waste. They're usually so big for most zippers that it will not work. It works great on zippers in jackets, which have larger zippers, but for pants, men's trousers, it does not really work. But they come in different sizes depending on what size zipper and what size button you're going to use, whether it's pajamas, which are bigger, or jackets.
Dressing sticks. I love this device. This is called a Dressing Stick by Homecraft. It's basically a three in one, or two in one. It has hook so you can use it for dressing, pulling up your pants, getting caught on microphones, pulling up blankets. Also a shoe horn, great for reaching down. So it's less likely to get lost. So it's a nice handy device should you need that, or want to have something like that.
Shoe horns: And lastly, there are lots of different types of shoe horns. Many of my patients with GVHD have restrictions in ankle dorsiflexion. That means bringing their ankle up like you're putting your foot up off the gas or putting your foot in a shoe. That ankle dorsiflexion is critical, and some patients with GVHD can't do that.
So this device is a shoe horn but it has a spring action. So if you don't have, and I'm not going to demo because I'll fall on my face, but basically you can compensate for limitations in ankle dorsiflexion using a spring action shoe horn. Or you have other kinds of shoe horns that are just plastic, have different lengths, et cetera.
Reachers: There are reachers out there. A lot of my patients, particularly trying to get things off a high closet that are light like clothing or blankets or sheets, you can use a reacher. But my recommendation is bring things that you use most frequently down low. Things that you don't use much, put them up high so you don't have to be necessarily reliant on the reacher. Because reachers work well for light objects, but anything over three or four pounds it will not work very well.
So these are other examples of the spring action, and I talked a little bit about that. I don't think I brought... this bottom middle is a heel guide. So it basically preserves the back of your shoe so it maintains the heel support. And you slide your foot in and you use the door frame to help compensate for ankle dorsiflexion. I put this slide in to show you a way that you can potentially compensate if you have limitations in active range of your ankle, but you can get there passively.
17:48 Personal Hygiene: So another area of self-care is personal hygiene, being able to take care of yourself. Long-handled brushes, long-handled shampoo aids are available.
Applying lotion: But I really want to stress the importance of putting on lotion. Many of the dermatologists I work with for my patients with GVHD prescribe various topical ointments or steroids. And they... number one complaint to their dermatologist is, "I can't put it on."
So there are lotion applicators out there that you can put the lotion on, depending on what type of lotion you have. I've had patients be real creative and use paint rollers and put the lotion on that. I had one patient the other day tell me he just took a spatula, put on a towel, tied it with duct tape, and that was his lotion applicator. So you can be real creative and make something. But not putting it on is usually not the go-to.
Cutting nails: Some of my patients have difficulties cutting their nails. I don't recommend cutting your own toenails. I recommend going to a podiatrist for that. But if you are going to cut your fingernails, the larger fingernail clippers are great because many of my patients with GVHD have difficulty because of weakness or tightness in their finger, they can't manipulate the small, typical fingernail clippers. So these are larger and a little bit easier to handle and it does the job quite well.
19:32: Managing Activities of Daily Life: So the next area I'm going to talk a little bit about is instrumental activities of daily life. This refers again, as I mentioned earlier, to community or home.
Automobile seat belts extenders: And seatbelt. My dad, he can't reach the seatbelt to pull it across him. So he just took a piece of rope and tied it to the seatbelt and that works just as well. But you can buy something called the Seatbelt Extender if you want to do that.
20:02: Handy bar to help you get out of a car: Handy bar. Super nice. And of course I did not bring it because it's too heavy. But it's about five pounds, so if you can't lift anything more than five pounds this would not be for you, but this is the example of it in the center top slide for those who are online remotely. And it's great for someone who has difficulty getting up and down from the car seat because the car seats are typically too low.
So what basically you do if you have a car made after 1974, it fits into the door lock on the side of the car and you just use it as a prop to lift your bottom up from the car. Great device. It also has, God forbid you should need it, it breaks the glass of your windshield if you're in an accident. God forbid you'd ever need to use that. Or it has a razor piece that helps cut the seat belts, again, should you ever need that. Hopefully never. But the biggest aid is helping get your bottom up. And also lowering yourself so you're not plopping into the car.
There on the upper right, an example of a key holder. Many of my patients have difficulties manipulating keys. This particular one can hold up to three keys. That's usually the maximum these key holders will hold. It doesn't work really great for car keys because car keys usually have a fob attached to it that's too big to use with a key holder. I don't think I have an example of that.
21:44 Home monitors and cameras make everyday life easier: And technology's really evolved. So now we have home monitors, cameras, so that you don't have to get up as often to see who's at the door or to change the temperature of your room, whether it's the Nest, which is an example on the bottom right. Or in the middle here is an example of the Ring which is, I believe it's an Amazon version, where you can just see who's at the doorbell without necessarily getting up. And you can even operate it remotely from your phone.
22:21 Cooking and Household Chores: So the next area is, I have, a lot of my patients have difficulties with care related to cooking and household chores.
Help getting up from couch: When I did home care, the number one complaint of my patients was getting up from the couches. They're very cushiony and they look pretty, but they're a bear to get out of, particularly for women like myself who are a little bit more on the slimmer side. So you can get furniture risers that you can buy commercially. They come in different widths, different heights. A cheap go-to is just buy 4x4s at the local lumber yard, put on rubber furniture protectors, nail it in, and you've got your furniture riser.
23:04: Loop scissor: The example of a loop scissor, wonderful. I use that routinely in my own house. It's basically, you don't have to have the effort to open and close...open because it opens automatically. I did not bring it. Sorry. But basically you just close and it automatically springs-action open. So it minimizes your doing a lot of cutting of paper, particularly my patients that are trying to open those Ziploc bags. And if you're just going to use it for one time and you don't want to fumble, just cut the plastic bags. These scissors really work very nicely.
23:50: Help opening jars: So number one complaint of my patients who are doing a lot of cooking is opening up jars. And I had a patient just the other day tell me she's embarrassed when she has to ask the checkout person at the supermarket to open up her jars. So there are jar poppers. I know my mother used to teach me, "Just bang it on the counter." Don't do that with glass, it will break. I can testify to that. Use a jar popper, and that basically breaks the seal of the jar and enables you to more readily open up the jar. And a lot of the jar openers now have a jar opener attached to it. Here's an example of one that has already. And this is another example of one that has the jar popper.
24:43: Devices to help open water bottles: So opening up bottles or jars. I have patients complain that they can't open their water bottle. So this is a nice little device that opens up water bottles, and I didn't bring one with me, and this opens up jars. But I really like the Good Grip for jars because jars come in different sizes. This really helps to compensate for the various-sized jars that we may need to open.
25:12: Devices to help with cutting food: Cutting boards, on the bottom left example. I have patients just take a wooden cutting board, put nails on it, and the nails will hold your tomato, your onion, while you're cutting. But if you want to go fancy, they do have cutting boards out there commercially. If you can see here, you put your tomato, your onion there, so you're not likely to cut your fingers. This particular model has a toast holder. So when you're buttering your bread, you're not fighting the toast sliding across the plate.
25:48: Devices to help put on edema garments: So for those patients that wear edema garments that could be a bear to put on and take off, there are a number of devices on the market that help put on compression stockings.
This is an example of pneumatic, it's good for someone who doesn't have fuller calves. But if you have a fuller calf, the Medi Butler, as I'm getting caught. On the bottom right of your slide is an example of the Medi Butler. It's wider.
So those people with a fuller calf, that works really great. You put the compression garment on the device. I'm not going to actually do it, but you have to do the sitting. Don't step into it, please. I don't want you guys to fall. While sitting, you put your foot in, you can pull up on the handles. If you have limited reach like many of my patients do, I just take a little bit of that double-sided Velcro, make it longer, so it's a little bit easier for you to bend down to pull up. Great device for open-toe or closed-toed shoelaces, I mean, I'm sorry, for a compression garment.
But if you have an open-toe compression garment, this is an Easy Slide. Basically, you put your foot in the Easy Slide, put the garment over this and it slides really nicely over. A FedEx envelope works just as well. Because when I didn't have the resources to buy these, I used a FedEx bag when I did home care.
So you just want something that will make the garment slide more effectively on your skin. And it basically reduces shear forces that contribute to open sores, so really important. If you are going to wear compression garments, talk to your therapist about different compression garments that you're using so that they know what device to consider.
28:11: Devices to help put on and take off clothing: This is more examples. The one on the bottom right, this one here, this is called a Donn N' Doffer. It's very effective for upper body, but it's heavy. It's a good 10 pounds. So I typically don't use those with my patients. And they take a... it's a pretty long learning curve to really figure out how to use them.
On the upper right is an example of a Doffer, and I didn't bring it, no I did not. That helps take the garment off. Be very careful, however, if you have fragile skin. It can potentially shear your skin if you don't use it properly. But it's a really nice device to help get garments off more efficiently without abrading your skin.
So now I'm going to talk a little bit about clothing challenges related to putting it on, but also to avoid adhesions or skin irritation to that area. So the number one go-to that I've learned from my dermatologist is use loose-fitting garments that wick your moisture away from your body. You can use camisoles for women, rather than brassieres, or you can use front-closing bras for those who have limited reach.
When you're outdoors, some patients, because of the treatment they're going through, they have photosensitivity, so you may want to use UV protective clothing, or use that spray that's available.
And so in your resources in the back of the PowerPoint are various resources for adaptive clothing. But just recognize that seams are also a challenge because they can irritate your skin. So now a lot of underwear comes with seamless varieties, so I would really encourage you guys to consider getting seamless underwear to avoid the potential abrasions.
30:29: Computer and Office – Eye Strain: So I'm going to talk a little bit about eye strain. We're on time. You want to make sure that you use filters or monitors on your computer so that it minimizes the glare from the computer. You have various filters as I mentioned, anti-glare screens.
Where you put your computer is really important so you're not looking directly into the window, but that the computer should be perpendicular to the window rather than directly in front. You can change the font size, the contrast. So instead of black font on white background, you can do black background with white font to make it a little bit less harsh on your eyes.
Very important to look at computer station redesign whether at work or in home. A lot of my patients tell me they are straining and they are really sore in their head and neck after working or at the computer playing games. But this is an example of someone who is sitting more effectively right here. Your hip angle is about 110, 90 degrees. You want your forearm well supported. He's using an actual arm trough that you can fit to most work stations. This gal is also using an arm trough. Or you can just use basically ergonomic devices out there from Home Depot or Office... Staples, et cetera.
32:06 Bed ladder to help get in and out of bed: Getting in and out of bed. A lot of complaints that my patients have is getting out of bed, so they have bed ladders. They come in different heights and sizes for different-sized beds, from twin to queen or king-size.
And so it's really helpful for rolling, sitting up, or getting up to stand. I don't recommend, this is an example of a bed ladder. It's usually cumbersome and gets lost in the blankets.
Please be aware to avoid scatter rugs. I typically tell my patients, "Please, just get rid of them." Or make sure they are really well secure.
32:45: Structural adaptations to the home: So I'm going to just quickly go through this, structural adaptations. If you have an existing home and you're not going to make a new home, sometimes you can put low-tech railings or banisters on stairs. You can look at putting in grab bars, motion lights. Number one place to fall is bathroom and staircases. So just put your nightlights on at all times at night.
33:12 Finding an occupational therapist to help you: So I'm biased, I'm an occupational therapist. So I'm really going to encourage you guys to seek out an occupational therapist at your transplant center who has the knowledge of adaptive devices that you potentially can trial in the clinic to see if it works.
33:35 Ways to find affordable assistive devices: Unfortunately, adaptive equipment is not covered by most insurance companies. Medicare does pay for a bedside commode but that's about it, other than mobility devices like canes and crutches and wheelchairs. So some commercial, like BlueCross sometimes do pay for some adaptive equipment.
Sometimes loaner closets at various patient advocacy groups may have funding. Or sometimes your therapist can have a loaner closet at the hospital that he or she can trial out with you and give you. And when you don't need it any longer, you can give it back. And obviously you can get private pay if you have the resources to do so.
34:19 Strive for independence, but use adaptive devices if needed: I just want to mention that adaptive devices are not the go-to all the time for everyone. I tell my patients, "I want you to really work to try to get your clothes on." But if it really takes so much of your life and quality of life and time, then it may be more efficient to use devices. So it's not always the go-to answer.
These are examples of other agencies that potentially may be able to have a loaner closet or can point you in the right direction or make home modifications. Rebuilding Together is an organization that remodels homes for the low-income disabled and it's an all-volunteer organizer. Habitat for Humanity is another organization that builds new homes.
And these are resources on where you can get adaptive devices. And these are resources if you are going to go for edema garments, these are resources on where you can get the adaptive devices to help put on the garments. And obviously going through your various patient advocacy groups may be of value as well.
So I want to thank the people I work with at NIH who have really taught me a lot. But mostly I want to thank you guys as patients for helping me to be a better therapist. So with that, and obviously the goal of life is to return to what's important and meaningful to you, and this is an example of a patient who has GVHD, underwent a double-lung transplant because of complications from lung GVHD and has returned to doing something that's important to him.
So with that, I'll entertain any questions.
36:19 [Moderator] Thank you very much, Ms. Comis. So right now we are open for questions for Ms. Comis, also for Dr. Juckett. And any questions from others? Please speak to the microphone. So we are recording the session for the people who cannot attend today.
36:40: [Juckett] How do you talk to your doctor about your need for assistive devices at home? Actually, I want to start off with one question. So my role here is to be the curious clinician because Leora has a body of information that really we're not that familiar with. And so I'm curious, what advice would you give patients who are seeing their doctors pretty regularly about starting a conversation about addressing some of these needs that they may have at home?
[Comis] I've trained my doctors, my dermatologists, to ask the question, "How do you do with putting on your clothing?" "How are you able to put on your lotion?" So just, "Are you able to do your self-care?" Or asking the caregiver, "What do you do to help support the person's ability to be able to get ready in the morning to come here?" I think, especially toileting, is a very sensitive issue. It's a source of embarrassment. So sometimes they want someone to ask them the question, but they're afraid to initiate the concern. So I think just being honest and open.
[Juckett] Do you think that there is, you put a plug in for having an occupational therapy assessment-
[Comis] Sorry, I'm an OT. I had to do that.
[Juckett] Which is a, I mean, it's a great idea. Do you have any advice? Sometimes it needs to go through a physician, sometimes it doesn't.
[Comis] It depends on where you work. Right now where I work, it goes through the hemotology doctor will then refer to our rehab doctor, who is a Pediatrist and then they would farm it out to the appropriate discipline, PT, OT, and/or speech. But sometimes you can do direct referrals. It really depends on your transplant center and how it works. Each place is so different. But even home care, if your patients are getting home care services, they are required by law to have an occupational therapist on contract. So that would be another way.
[Juckett] Good.
[Comis] But not all hospitals do have an occupational therapist, I'm going to be honest. Or they're only there once every other day or something.
[Juckett] Yeah, questions?
38:45: [Audience] Actually, these are going to be two comments. One I'll sit down for and then the other I need to stand up for.
[Audience] I had seen you at NIH in February of '19.
[Comis] I recognize you.
[Audience] And I just thought you were outstanding for many reasons.
39:00 [Audience] Grab bar on low toilet is very helpful: For many reasons. But the one reason that really struck me is one of the most useful things that you had sent to me was the grab bar on a very low toilet. So when I left you said, "Well I'll send that to you," because you had me work a couple of them. And I thought, "I'll never see that." Not only did you send it, but then you also called. So I just was really impressed with that. And it is probably the most useful thing I have because I'm not wasting my energy using weird things to get up from the toilet. It's right there. So anyway.
39:39 [Audience] Comfortable bathing suit for people with skin GVHD: And then the second comment, and I'm going to have to show you this because you're probably always looking for things, this is a bathing suit. And it is the most comfortable thing for skin GVHD. It wicks the sweat away. And it's from Coolibar and it's a 50 UVM protection. But to go outside in regular clothing and anyway and they come in all colors and people can't believe it's a bathing suit.
[Juckett] Wow!
[Comis] Thank you very much.
[Juckett] I just learned something else. Thank you very much for that recommendation. I will pass that along to my other future patients.
[Juckett] Any other questions? actually it's first time for seeing very interesting improvement. Do you have a website? You know, I think it's not easy for the patients to find all this.
40:36: [Comis] Website to help find assistive resources: On the resource slide, there's one called Performance Health and it's nice because you can type in the area of difficulty, such as dressing. And it'll pull up all the different devices related to that area. Same thing for Wright Stuff, it's an awful name, but that online resource also breaks it down by the area of self-care, rather than the name of the device. So those are two.
[Juckett] I think NC Medical, North Coast Medical, does the same thing. AliMed does the same where they break it down by the area of difficulty as opposed to the device name.
[Audience] So you also mentioned that maybe they are not covered by the insurance can you get a reimbursement? Or it depends on each patient you see?
[Comis] I'll be honest with you, most commercial insurance companies will not pay for this. Some of them are not that costly, but it can add up if you're buying several products. I think I spent about $300 on all this right here. So it adds up, so unfortunately that's a problem.
[Juckett] Yeah. Any questions from others? Okay.
[Juckett] If not, thank you so much for being here, guys. I learned a lot.
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