ISS 2015: IC15 – The Right Technology at the Right Time – Walls

Just another WordPress site

ISS 2015: IC15 – The Right Technology at the Right Time – Walls

Hi, I, uh, would like to welcome you to our session this afternoon: The Right Technology at the Right Time: Considerations for Aging with Spinal Cord Injury. I said that because the building is so large I wanted to make sure you knew you were in the right place Our speaker this afternoon is Ginger Walls, she completely her PT education with an MS from Springfield College in 1989, she was the regional director for the Medstar national rehab network. She has a broad background in neurologic PT, especially seating and mobility She has been certified as a neurologic clinical specialist from the ABPTS since 1995. She received her certification as an ATP from RESNA in 2001 and as an SMS in 2010. She regularly speaks and advocates in the area of seating and mobility. She is currently an clinical education specialist at Permobil and we welcome her today and are very interested in what she has to say [applause] Ginger: Thank you guys from coming and taking the time to spend some time talking about considerations for aging with a spinal cord injury, and obviously we are all here interested in wheelchair seating and mobility and so we want to talk about application of that to help those with spinal cord injury age well Because as we know, as people get older, nothing get easier, right? I’ve certainly noticed that for myself and I don’t have a disability, so those with a disability often are even more challenged as they get older. And those challenges can relate to skin integrity, posture, fatigue, managing repetitive stress injuries for vulnerable or weakened muscle and joint areas. And bottom line comes down to functional, those issues can get in the way of function and when you can’t do what it is that you want to do, that’s not very much fun at all So where I came from at National rehab hospital, we have a motto that’s called “adding life to years,” and that’s what we do in rehab, and that’s what we should be doing in seating and mobility is helping people have the tools that they need and the equipment that they need to do the things they want to do that are important to them, and that’s how we add life to years So for the learning objectives for this time that we have together, I want you to be able to identify 3 impairments or functional limitations specific to spinal cord injury in those that are aging with that disability. I want you to be able to identify 3 different seating and mobility technologies that you can apply or offer to someone to help them address those concerns. And I want you to also talk about three important social and environmental considerations to go over as a team, as a rehab team, with, including the patient, the user, the end user of the equipment, they’re the ones that are really going to need to buy into whatever changes may be necessary or it’s just, it’s not going to work out. So those are some of the things that we’re going to talk about today and I’ll try to show you some case examples to help illustrate those points So Dr. Suzanne Groah, who is at the national rehab hospital, she’s a researcher, did an article that was in American Journal of Physical Medicine and Rehab in 2012, and was about aging with a spinal cord injury. And she found that, just to sort of set a background, the most common age for a spinal cord injury is 19. 19 years old. So that’s not very old And that the, 60% of the population with spinal cord injury was under 45 years old, which I now consider to be quite young. So, most of the people with spinal cord injury have the potential to live a very long time with their injury, and that’s what we want, but we want them to live well. We don’t want them to just be getting by, we want them to be able to participate and function to the best of their ability So, Dr. Groah’s article went on the describe that the mean age of injury has increased It used to be that the mean age was 28.7 Now that’s gone up to 40. And the reason for

that is there is now a bi-modal age distribution, that means two peaks. Young adults are often injured as a result of motor vehicle crashes or sports injuries or unfortunately violence, whereas older adults, over 65, may be injured because of a fall. And so we have two very different age groups that are coming to us in rehab and need our help with their rehab as well as their equipment. And they have very different needs. They have very different fitness levels and comorbidities that they are bringing to their rehab experience So either way, a phenomenon that we see with spinal cord injuries is something called accelerated aging. Who wants to sign up for that? That’s sounds great, doesn’t it? That’s where the aging trajectory and rate, the effects are accelerated, and that leads to a narrow margin of health. So these folks with spinal cord injury are more vulnerable to some problems that can ultimately, unfortunately, lead to even death, if they’re not met, if they’re monitored, if they’re not prevented, if they’re not evaluated regularly, so because of the physiologic changes that happen with spinal cord injury. So what can we do to ameliorate this condition? We’ve gotta make it go away, right? What can we do as professionals to help these folks with spinal cord injury best, not have those complications that they might, that might happen. Is there something with the equipment that we could do? Is there something with education that we could do? What can we be thinking about? Is it possible that the equipment that the person is using is even contributing to some of the problems? Thank you for the affirming head-nod, I appreciate that So I want to talk about some of the factors that influence altered aging with spinal cord injury. First one is increased obesity and adipose tissue. Because of lack of standing, walking, moving around, lack of weight bearing, you get some body mass and composition changes in people with spinal cord injury. Muscles atrophy, adipose tissue can accumulate, and that’s a problem. That’s a problem. Obesity is very common with spinal cord injured folks, and so it’s important to consider diet, it’s important to consider physical activity as a means of exercise, and it’s important to consider the equipment. Sometimes if people gain wait, there need to be changes in the equipment, and sometimes, again, if people gain weight, and maybe certain functional activities like propulsion get more difficult So there’s an inevitable tie-in of weight gain and equipment considerations Along with the weight gain comes increased cardiovascular risk. Because of increased adiposity in the abdominal region, they, folks with spinal cord injury, have an increased risk of spinal cord injuries, and in fact, ischemic heart disease was one of the leading causes of death in this population. Sometimes aerobic exercise is difficult for these folks as well, so that’s part of the concern And a lot of that’s due to sitting. Even in here as you sit for another hour plus, that’s not helping your health, unfortunately. So sorry, if you need to stand up, help yourself but reducing sitting time improved metabolic consequences, even in the healthy population So for folks who have to sit all the time, that’s one of the reasons why they have some of these cardiovascular disease concerns In the healthy population, increased sitting time associated very strongly with increased cardiovascular disease mortality, and the time spent sitting was independent of any physical activity or exercise program that you did. So even if you all got up early and worked out this morning, you’re still sitting all day. So, sorry, it’s still not good to be sitting for a prolonged period of time

So the public health message here from this article that Patel did is that we should be looked at ways to reduce the amount of time sitting Alright so I want to go over some case studies to go through some of these points. So I want to talk about some of the things that we need to consider when we’re going to make a change or recommend a change in our equipment. So if I were to recommend a change in equipment in somebody and just say “here, this is what you need, go ahead, have a good time, good luck.” That probably wouldn’t go over very well, right? Because I didn’t I’m just giving, imposing my view, my opinion on that person I’m not involving them in the process. So it’s really important to get a big-picture understanding from the client about what their home situation is, as far as their environment, what their work environment is, think about transportation, whether they’re using public transportation or they’re driving a car of they’ve got a van, how is the equipment secured in that vehicle, what are the functional trade-offs? Are there any trade-offs you have to talk about if someone’s moving from a manual chair to a powerchair? you betcha. you betcha. so we need to be able to talk about those things Then we need to be able to decide what the priorities are. There’s some give and take, right? When you change equipment you might give up the transportability of a manual chair because the powerchair meets their needs better for mobility and pressure-relief. That’s a trade-off. So you need to decide what the negotiables and non-negotiables are with that person who you’re work with, buying into that If they don’t buy in, then you risk equipment abandonment, or you risk the phone call, the dreaded phone call a month later, saying “this isn’t working out for me, you’ve got to take this back.” So education is part of this process so it’s important that we understand what the person’s vulnerabilities are as someone with a spinal cord injury, what our best practices are, so we can help them make informed choices So the whole process involves a synthesis of knowledge, right? We need to understand about the person, we gather information about evaluation, we understand from the patient, “what are your priorities? What can you tell me that’s important to you, that we want to make sure that this equipment is going to be able to do?” We need to understand best practices, like what the clinical practice guidelines from the PVA, or the RESNA position papers. We need to understand the equipment and the trade-offs involves in different equipment choices. We want to determine with the patient what the goals of the system are. Do the definitive equipment recommendations in ordering, and then bring the person back for fitting and training. That’s a process, and if we skip any of the steps in that process, the chances of having a great outcome go down. And so it’s important to not shortcut the process So here’s a case study of a fellow who’s a 27 year old guy with tetraplegia due to transverse myelitis. He had the complication of having a right femur fracture and developing heterotopic ossification in his right hip, so he had a real significant hip flexor limitation. he could get to 100 degrees and that was it He had swelling in his legs and he had skin breakdown on his fibular head, areas in his greater trochanters, he had a wound-vac on, and all of those breakdown areas on his sides were caused by rubbing on wheelchair parts because he had gained weight when he was in the chair. He was on a lot of different steroids and that contributed to the problem. He was dependent with his transfers and his pressure reliefs and his ADLs, and he lived with his mom in an accessible apartment in DC So here’s his old chair and some, well, some of the problems that you might notice are the Ace bandage holding the armrest on, um, that’s a concern. And he, because of his weight fluctuations, he had exceeded the seat size and capacity of his present wheelchair, and again, with the steroids he was kind of up and down, but he was currently above 285 pounds So he qualified under medicare for a heavy-duty powerchair. And we determined, because wheelchair

disrepair was a real significant problem for him, that a chair that had a greater weight capacity would be a good idea. Now, even though a standard manual wheelchair weight capacity goes up to 300, even with medicare, you can get someone who has 85% of that capacity into the next size up chair. And that might be a really good idea to improve the durability of the equipment, especially if someone’s having weight fluctuations. So that was one of the things that we talked about with Eduardo when we were considering the new equipment This equipment was broken, the tilt system wasn’t fully functioning, the back angle wouldn’t open up enough to accommodate his hip flexion contracture, and as a result he didn’t get the postural support that needed, he didn’t get the pressure relief that he needed, and he was not a happy guy So with, for his new equipment, we recommended a heavy-duty powerchair with a fixed open back angle to accommodate his hip flexion contracture, we got him a Permobil M300 heavy-duty, with a corpus seating, power tilts, and power center mount elevating leg rests. He was using, we went to a ROHO high profile cushion and so that met his needs for his size and his positioning. Here he is in his new chair and you can see on the sides here, this armrest style was open, so even if his weight fluctuated a little bit, he was going to get a little bit of grace from this equipment because there wasn’t an armrest post that he was going to rub up against especially because that’s where he was having a lot of those wounds. Same with the leg rest. This is a center mount leg rest instead of a leg rest mounted on the side, so it was going to stay off of his fibular heads and he wouldn’t be rubbing Plus of course the seat size and weight capacity were more in line with what his needs were So that was, that was how we helped Eduardo compensate for his weight issues There he is with a front view. That his Hoyer sling and the tubing from the wound-vac. It kind of looks funny in the picture, but Q: Is the Hoyer sling on the Roho? Ginger: Yeah, the Hoyer sling’s on the Roho, that’s not ideal, um, but when he came to seating clinic, he did not want us to take him off of the sling there, he was more comfortable with getting out of that at home. But he could do his pressure reliefs, he could sit at an angle where the back accommodated him, so that at least was a much better setup for him functionally So bone density complications are another issue that folks with spinal cord injury face because again with decreased standing, decreased ambulation, bone mineral density tends to go down and that results in increased risk for fractures, all of the problems that come with fractures, heterotopic ossification, the excessive laying down of bone at major joints in the body, usually at the hips, knees, shoulders, elbows, can also be a problem that compromises function and posture and independence So here’s another case study of a fellow named Joe who’s 34 years old, he has a T12, ASIA A spinal cord injury, and he has HO at both hips. So he’s got some really bad range of motion limitations. so I saw him in 2010 He came in and the left hip only flexed 35 degrees, and the right hip went a little further to 90. He came back in 2014 and his range of motion had gotten worse, and he had also had fallen out of the chair and had fractured his leg, so he had a little bit of deformity in his lower leg as well. He had had skin breakdown problems and had had a history of a flap, so he’s got a number of different things going on all because of his posture and positioning. He had pain in his neck, he was dependent with his transfers, well, I shouldn’t say fully dependent, he did help, but because he was in this stretched out position, he could help move his upper body but he needed somebody else to manage his legs, so he couldn’t transfer by himself. Plus his wheelchair kept tipping over So this is him in 2010, and you can see he’s also got the duct tape foam thing going on,

and he’s got this piece of foam shoved in there because the chair wasn’t making contact with his back. And he’s stretched out, he’s gotten his hand and his arm behind his neck because it’s helping to support his head because he’s all stretched out and he’s tired of sitting like that. It makes me tired just looking at him. There he is, different angle, so we got him this chair in 2010, and he came back to us in 2014 with this chair, you know that we had given him 4 years previous, and again the problems were the wheelchair kept breaking, the wheelchair kept tipping even though there’s an amputee axel plate on here, we had moved the wheels back to try to make it more stable, but it still, he was still having problems with this chair Here’s what he looks like sitting in the chair and you can see why his neck might hurt, why his shoulder might hurt from propulsion at this point. Now you’re asking, “well, why did you put him in the chair?” It was very important to him at the time to stay in a manual wheelchair when we saw him in 2010 He wanted his buddies to be able to put it in the car, that was his thing, it was very important to him. So that’s why we did that But he’s not at the angle, at the position you would want for optimal pushrim biomechanics, is he. So, and you can see that the, the back canes are kind of all up in his shoulders, there, so that wasn’t comfortable, and again his neck didn’t have any support. There is the varus deformity in his leg, he’s rubbing against the hanger in the, on the wheelchair, and his feet are not positioned well. So what we decided with him, at this time when he came back, was that it was time to transition to power to meet the goals that are listed out for you here: we could improve his postural support, we could accommodate for his range of motion restrictions, we could reduce the shoulder problems that he was having and the shoulder pain that he was having, and we could improve his ability to do his thing, his MRADLs, including this pressure reliefs, he could do that independently with power tilt, improve his safety, the wheelchair is not tipping over, that’s a plus, right? And reduce the amount of repairs because the supplier was getting tired of running back and forth, fixing the backrest when it feel off the chair because it was under so much stress. So we dropped him in a powerchair, I mean not really dropped, we place him gently in the powerchair, and this was just a demo that we had in clinic, and we, we had opened the back angle up to meet his hip angle requirements, and look how goo he looks. His head’s supported, his back’s better supported, his hip angle’s accommodated, his left shoe fell off but, you know, that happens…so that looked a whole lot better What else do you notice about the position? Sorry? It’s got tilt, yep, we provided tilt for pressure relief, so he tilted himself back so that way he felt like he was not sliding out. What about the weight distribution? That works out really nicely with the front wheel drive chair, with him being stretched out like that. He’s really over the center of the chair. What else do you notice about Joe? He’s relaxed, yep. What else? He’s sitting up better. How does he look now compared to how he looked in the 2010 pictures. Has he put on any weight? Yeah. Back to complications 1 and 2, right? He’s got that little cellphone holder now, right? [laughter] Yeah So we decided with Joe that his new equipment was going to be a C300 power wheelchair with the corpus seating with power tilt that we said, the power center mount elevating leg rests, that got the leg rests away from the varus deformity in his lower leg, and he had a headrest and he had a Jay 2 cushion and it worked great. It worked great. There’s, there he is from a different angle. And he took to driving like that, it was, he was just so relieved to not be in the manual wheelchair He said “you know, it was important to me at the time, but now this is what’s important to me.” So Joe had some examples of increased musculoskeletal wear and tear and manual wheelchair use can contribute to that, particularly if the chair is not set up well. We need to be concerned

about repetitive stress injuries to the shoulder and elbows and wrists as well. So fortunately the PVA CPGs on upper extremity preservation give us some good guidelines to follow to help our patients and help us help them better, and you can find these on the PVA website, they’re free. What’s better than free clinical practice guidelines? Maybe free ice cream, but they’re great, you can download them, you can load them right onto your computer, you can give them to your patients, it’s a great, great tool So wrist, elbow, shoulder, are all vulnerable areas. I’ve seen, particularly more shoulder injuries, and one thing that’s common, no matter where the overuse injury is, is pain is often the symptom. And that pain in and of itself can contribute to decreased function So we really need to pay attention to these issues. So a summary of some of the recommendations from the clinical practice guidelines includes, 1, back to education again, let people know “hey, this is a concern, this is why this is important. You need to pay attention to your shoulders because you need them for transfers, and you need them for pressure relief. You know it’s a, we want to protect you so you can do what you need to do for a long period of time.” so maintaining fitness is another concern, and again back to the balance between use, a need for cardiovascular health, and obesity, weight gain, you know those, they compound each other and it can be a vicious cycle there. The guidelines suggest that we routinely assess the patient’s function. That means when somebody says to you “but I’ve never had to do that before,” well, things may have changed a little bit. So you may have to do something differently than you had to do before, and that can be hard to get your mind around. Sometimes it takes me a few minutes to get my mind around something that I may need to do differently. So we need to be able to help people through that mind-changing process So as far as ergonomics of the chair: we want to minimize the frequency of repetitive upper limb tasks. So reduced pushes, if we’re talking about propelling a chair, and reduced force that’s required to push the chair. And that can be accomplished by proper wheelchair setup, and we also want to minimize positions where the limb can be injured, and that might include, it’s not, people aren’t, don’t just injuries from pushing, people get injured from transfers, people get injured from falling out of the chair if it’s not balanced well, and then pushing of course is another example. But avoiding extreme positions of the wrist, which often includes full extension, and internal rotation and Adduction. Guess what you do when you transfer–all of those things. All of those things. So helping people learn safe transfer techniques is something we can do in PT and OT and that’s a good thing, that’s a good thing. And using equipment to help transfer. Or considering the equipment that they’re using and maybe, maybe they do need to think about a seat elevator even if it isn’t a covered item So with high-risk patients, discussing the pros and cons of changing to a power wheelchair if repetitive stress and propulsion is a problem is an important conversation to have like we did with Joe in the last example. If the person is going to be a manual wheelchair user, those folks need to have a, an ultra lightweight wheelchair that can be made to measure to their dimensions. So frame length is important as well as the size of the seat and all of the accessories set up in a configuration that works best for them. The rear axle needs to be adjusted as far forward as it can while maintaining stability of the chair. And that’s going to vary, person to person, based on their skills and their individual balance and their needs, but that’s an important adjustment to make. And if we’re providing K5 chairs and we’re not adjusting the axle, then we’re missing the boat. We need to make sure we’re setting the chair up right so this is an example of a chair that, the axle is actually forward of the user’s hand He’s got good wheelchair skills, he’s got good balance in the chair, it’s about at hand level, that’s what you want, fingertip to axle plate is one measurement, in his case

he’s actually a little, getting a little bit lower, which is good for him. If people can sit down in that chair they’ll have a lower center of gravity, and they’ll have more of a gear, more of a torque when they propel So the other measurement is with their hand at top dead center of the pushrim, that the elbow angle is about 100 to 120 degrees of flexion. And then we need to educate the patient about pushing. You don’t get far pushing like this, right? That’s high frequency without much result, without much roll. So we need to teach a circular pattern that’s used. You’ve seen the wheelchair racer guys, you know they push, they drop, push, drop, release, so that they get maximum roll with minimum repetitions So and we want to make sure that the wheelchair user has the appropriate seated posture in the chair so that they have the best stability, that they’re not hanging onto the armrests because they’re afraid they’re going to fall out of the chair, so it’s push, grab on, push, grab on, or I can only push a little bit because I’m afraid I’m going to fall if I move my body out of a certain area. And we want to make sure the wheelchair is stable. Some people don’t want to push hard because “oh, my wheels come up off of the ground” or “I’m not stable.” So we want to make sure that the chair isn’t rearwardly tippy, or frontwardly tippy. And not everybody checks this with wheelchair setup. This particular fellow was an elementary school teacher, so being able to reach to the floor was really important to him, being able to be down at the same level as the kids he was working with, and he was able to do that in his chair because it was set up properly for his body measurements. Not just the seat depth, but also the frame length And then if the person’s really high risk they may need power. High risk patients may be somebody who’s obese and it’s harder for them to push, or their arms are more abducted when they’re pushing, that’s not in a great advantageous position to push, or they may live in San Fransisco and have a million hills I remember the first time I went to San Fransisco, I thought “how can anybody be a manual wheelchair user here, this is nuts!” But, you know, I’ve certainly had patients who live in areas where there’s steep hills, and that’s something to think about, what will their environment be. What are the advantages of power? If you’re having to discuss with the patient, switching from one to the other. Less repetitive stress, more accessibility. What are the disadvantages, what are the trade-offs? Accessibility, transportation, yeah, those are some trade-offs. Sometimes there’s a perception that there could be an increase in weight, you know, that’s a give and take, well, because guess what, if you hurt your arms, you’re not going anywhere anyway. So there’s a trade-off there. Wheelchairs are not necessarily their first mobility tool, exercise may be something that people want to pursue, there’s great wheelchair sports and opportunities, but we have to make sure that day to day life is taken care of first, for sure Then, back to equipment selection. We always need to make sure that the person has optimal postural alignment of their trunk so that they have good biomechanics when they roll If the person’s kyphotic, they’re more likely to be impinging their shoulders, and so we want to make sure that we’re positioning them well in the chair. And then for people who are having trouble with overhead reaching, because they’ve had a rotator cuff tear and their shoulder’s compromised, or it hurts when they reach overhead, we might want to consider seat elevation or standing to help get them up to that height where they need to be. So in any event as I said before, without a thorough assessment of a patient’s environment we can’t really get to the point where we want to be in understanding the needs to provide the right equipment. And back to the transfer training piece, we need to help them perform level transfers whenever possible. I always ask the patient, “How high, tell me about the height of your wheelchair. Is this a good height relative to your bed? Do you need to be higher, do you need to be lower, what would that do to your environment? Do you need to

be able to change positions?” Sometimes using ergonomic pushrims can help with the grip and repetitive stress, but whatever it takes to improve the ergonomics of the chair, and the ergonomics of the environment, we need to be thinking about Ok so here’s another case study involving some problems with wear and tear on the shoulders So Bill is a 60 year old guy who, C7/C8 ASIA A tetra due to motor vehicle crash in 1982 So he’s been a spinal cord injured fellow for a while, since 1982, do the math. That’s significant. He 6 foot tall and 220 pounds He’s complaining of bilateral shoulder pain, and he’s come to PT to help deal with the shoulder pain and he’s had platelet, PRP injections to his shoulders to try and address the pain issues that he’s having with both his biceps and his superspinatus tendons. And his problems, his complaints are pain with propulsions, transfers, getting dressed, getting in and out of the car, pretty much everything, right? And also getting the car, the wheelchair in and out of the car getting it in the back of the car has become a problem. And he was really proud, you know, “I’ve been able to do this since 1982 when I got injured, and now I can’t. What am I going to do?” So those are some tough decisions that he had to face So finally he went to a convention and the hotel bed was at a different height, and he tore his biceps tendon transferring into the hotel bed. So conventions can be hazardous to your health, so beware. That’s what a torn biceps tendon looks like, so it was a nasty tear and that really laid him up for a while So the changes that Bill made, he came back to PT for treatment and he said “Ok, I’m going to try those power assist wheels.” He already had an ultra lightweight manual wheelchair, so we put the power assist wheels on and he was able to propel without pain. He also decided he was going to purchase a van to make the transportation easier. He was like “Oh my god I wish I’d bought this years ago, this is so much easier.” And he continued to use his same cushion and back, so that didn’t change. So the main thing that changed was adding the power assist wheels and buying the van. Huge changes for him, but they made such a difference and he said “you know, my family was visiting and the grandkids were here and they were going to take them to the zoo, and I didn’t hesitate to go. And I couldn’t have done that before.” So that’s an important participation element that he would have missed or had difficulty with if he hadn’t been ready to make that change. But he was ready to make it, unfortunately it took that nasty tear to get him here, so it’s greater when you can be proactive rather than reactive, but nevertheless he’s still able to do things that he wants to do. Yes sir, question? Q: The interesting thing about going to that type of step is it allows him to make that big change with his transportation device So in the event he had additional problems with his shoulder, the transition to power would be relatively simple at that point because his manual chair was no longer folding because of the locking device for the van, he has the weight of the power wheels so he couldn’t lift it, so he had to make that transition to a device that wasn’t folding Ginger: The comment was that Bill’s change to the van and to the power assist pushrims simultaneously makes, if Bill needs to change to a full-blown powerchair later, it’ll make that transition easier because he’s already got the van in place. Did I restate that correctly? And he’s able to, he’s that much further along so he’s prepared. He’s a boy scout So when Bill came in for, to get his new power assist wheels, we had to do some training It’s a new device. He’s been pushing since 1982, that’s a long time. But this, so he had to unlearn how he had been pushing, and we had to really take some steps to teach him how to use this chair, how to use it on hills, level surfaces and hallways, and I had to keep telling him, stop pushing! Because he was just pushing with the normal cadence

that he had been pushing with. I said stop pushing, let the chair get you there, that’s the whole point. So I want to show you a video of him kind of getting the hang of this. So he’s going in to, he’s pushing into the doorway here, and see how he keeps pushing? And I’m yelling at him, stop pushing! Then he goes into the wall, that happens, and so he’s like “ok, I’m going to push once” and then I’m telling him “let go. See how far you go. Push again, let go.” and he’s having to resist the temptation, resist the habit of continuing to push. So the training is really important to emphasize how the equipment is supposed to be used to help somebody Skin breakdown. Skin breakdown is a very prevalent problem in spinal cord injured patients, and in all patients with neurologic compromise who are using wheelchairs. Is it inevitable? No, not everybody has to have skin breakdown, but they’re at risk. So we need to do some things to make sure that that doesn’t happen to the best of our ability, or at least that the equipment doesn’t contribute to the risk So we need to, again, follow the advice and the PVA, CPGs on pressure ulcer prevention, for monitoring skin breakdown, monitoring skin, doing pressure reliefs, and using the proper equipment to make sure that people can achieve adequate pressure relief regularly and functionally in their life So here’s the PVA, CPGs on pressure ulcer prevention, they were just updated in 2014 and you can get those online as well. The bottom line is an ounce of prevention is equivalent to a pound of cure. The cost of pressure ulcer treatment is staggering, you know if somebody has to go to the extreme of having a flap surgery, compared to the cost of any equipment that is available to prevent it. So we need to provide the patient with regular evaluation of their support surface, because the cushion that had worked before may not be working now if they’re coming to you with pressure problems. What’s changed? What’s changed, is it their ability to do pressure reliefs, is it their ability to transfer has changed and now they’re kind of dragging their but a little bit when they transfer, what’s causing the skin breakdown? We know the areas that are most common. It’s over bony prominences, right? well, bony prominences are at risk both in bed and in the chair, and oftentimes when people come to see me, we sort of figure out, well, where’s the skin breakdown, well, let’s look at your seated posture in the chair and you think “well, that areas really not getting subject to pressure or shearing in the chair. Maybe it’s coming from the bed Or maybe it’s coming from transferring.” So it’s important to kind of go there and delve into how they’re interacting with their environment all day. Nevertheless, we want to make sure that we’re prescribing wheelchairs and support surfaces that meet the person’s individual needs and measurement, and that we’re using appropriate cushions, the best ones that we can find, to help them meet their needs for both pressure reduction and postural support And there’s lots of great cushion options out there, fortunately, because I think the last presenter said “there is no one cushion that right for everybody.” That’s true. There’s lots of different kinds of butts out there And we need to asses the full seating system support. If they’re leaning off to the side, then they need more trunk support, or they need a position change in the chair to give them better balance so that they don’t lean, those are all factors that can contribute to skin breakdown So the other thing that’s critical besides the posture is that we need to make sure that they have a way of doing pressure release consistently. If they can say “yeah I can sort of lift myself up or I can lean over” but it requires a maximal effort and it hurts, then they’re not going to do it. So someone who can’t do an adequate pressure relief in a manual wheelchair may need a power wheelchair another alternative is that there are manual wheelchairs that are manual standers, standing is reasonable pressure relief, if they really want to stay in a manual wheelchair but they can’t lift themselves up, then they can use a manual standing chair. But oftentimes people at this point choose to transfer to the next step and move into power. And then again, back to education. It’s so important the people

understand why they need to do pressure reliefs, when they need to do them, and why it’s so important. Generally the guideline is to do a weight shift every 15 to 30 minutes to get maximal oxygenation to the tissues. People who are more active don’t need to be, can get away with not being as vigilant about doing a full pressure relief because they’re moving around a little bit more. If you have an active para, he or she is usually moving around and shifting their weight in the chair a little bit more than someone who is very static in their position. If you have, if a person is a tetraplegic and they can not move at all, then those are the folks who really need to be vigilant about doing a full weight shift to relieve pressure So follow-up with training is really important so that people understand what a full weight shift is. Some people are scared to death to tilt and recline all the way back in the chain. Anybody have one of those folks? Yeah? It can be scary if you haven’t done it before I had one poor lady, I felt so bad, she cried “please don’t make me do this.” You’ve got to do this, it’ll be ok. And so I do it with them in seating clinic, go all the way back, we’re here, you’re going to be ok, so they can experience that and see what it’s like Sometimes they do go back and not only is the angle not sufficient for full pressure relief, the duration isn’t either, or the frequency isn’t sufficient, so all of those things need to be taken into consideration There are some tools to help with compliance or strategies, you can look at setting a timer on your smartphone, you can look at the virtual seating coach application that over in the Permobil booth, that’s a pretty cool tool to monitor are they going back far enough and are they doing it frequently enough, and providing reminders. you can look at setting memory seat functions or the independent repositioning mode, that’s a preset angle so if the person gets tired of holding the joint stick or holding the button to go all the way back that you can even latch the function, so you can pre-program the position of optimal pressure relief in tilt and recline and say “hit this button and you’re going to go there,” and then you don’t have to worry about holding the time on switch or on the joint stick to get there Sometimes that’s what it takes. And then you want to check, when you get all the way back, can you get up. That’s a really important thing because nobody wants to be stuck back there all day. At some point we want to get up, get back up again. And then consider standing as an alternative way to do pressure relief One of the reasons that, I want to make sure I didn’t skip a slide, ok, one of the reasons I think that people don’t tilt back far enough and maintain that or do it often enough, is that it’s not really a very functional position, unless you want to take a nap. So if you want to take a nap, that’s a great position. But otherwise it stops you from whatever you’re doing in your day, and you need adequate space, you know if you’re at work and you’re at your desk, you feel kind of out of place doing that full tilt and recline, but standing is a more normal thing and provides great pressure relief as well as some other benefits so that’s something to think about. So dynamic seating systems are good for pressure relief, but they’re also good for seating tolerance. Some people just have a difficulty being up for a prolonged period of time, and so sometimes people do need a break and that would be a good time to tilt and recline all the way back. Some people get dysreflexic sitting for a period of time and need to tilt all the way back, so those are some other considerations Here’s a case study kind of illustrating both of those. So Henry is 50 years old and he has a C5 injury on the right side, but he’s T4 on the left. So he’s very different in function and strength from one side to the other. And that caused some postural problems because he’s got scoliosis because one side is just stronger than the other, and then he also had a complication where he had osteomyelitis to his right leg and ended up with a, um, amputation, a BKA on this right side. He is a very active, busy man, and he has dysreflexia symptoms by the end of the day, like spasticity and sweating, and he has redness on his skin

at night. And when he gets home from work, he has to get out of his chair and lay prone all evening long. Well that’s a heck of a routine just because of the problems with his skin and the problems with the dysreflexia Plus, he’s having increasing shoulder pain with wheelchair propulsion and doing his MRADLs So here he is, this is his current equipment he’s having these problems in. So he’s already got the power assist pushrims. He’s already got that and he’s still having these problems because his seating tolerance is going down So he’s a full time government employee, he’s very active, he drives his own van, 6 foot 3, 195 pounds, so this is his present equipment and he fits right into your example. What we ended up recommending for Henry was a power wheelchair. So we got him a C33 permobil with tilt and recline and center mount elevating leg rests and a seat elevator to help with his reaching. He had good lateral trunk supports because of the scoliosis and hip guides, and then he continued to use his ROHO, and that’s really increased his seating tolerance over the day. Now he already had his van, so the transportation wasn’t an issue, he just had to get used to using the new device. So here he is in his new device, and he shared with me that it did take a while to get used to it but then he did find that his symptoms went down afterwards So bowel, bladder, and breathing. These are other areas of complications that individuals with spinal cord injury have. Repeated UTIs are also an issue, as is constipation. You know, why? Because they’re sitting, bladder is not emptying, or if they require repeated catheterizations where again, you’re susceptible to UTI. Without standing the bowel function doesn’t, they don’t move around as much as when a person’s up and vertical, sometimes gravity is your friend, right? and sometimes it’s not. And then pulmonary insufficiency The diaphragm does not have maximal excursion when sitting compared to standing when there’s more room for that to happen. And so that can cause problems leading to respiratory infection, pneumonia, which can be a problem for someone that can’t cough well, too. So those are important to remember as complications, as is depression. This is often overlooked, but depression rates are higher for someone with spinal cord injury then the general population, but they vary with the age of the person and the time that’s elapsed since the injury The risk of depression is highest in the first two decades after spinal cord injury. In other words, the person experiences a loss with the spinal cord injury, makes the adjustment, and copes well with it, until there’s a new loss of function with aging and a change needs to happen, and that’s again, a time when we can help and we can intervene Function and participation impact with spinal cord injury is something that we need to think about and has direct implications to our equipment recommendations. As someone ages with a spinal cord injury, just like in the normal population, you might have more health problems and comorbidities that creep in and you see a use, an increase in use in the medical system, we have to go to our doctor more frequently as we get older And lifestyle, environmental and employment factors also impact participation for those aging with a disability, they want to keep working. You know my parents are getting older, they’re in their 70s, but they like to keep working. It keeps them involved and participating, it’s no different with this population, they’re just faced with the challenges a little bit earlier and so we need to think about how we can help them do that. Unfortunately, low income is also a factor because it can impact the person’s access to equipment and to healthcare So there was a study done that looked at access to equipment and found that using the PVA, CPGs as the standard of care for, that an ultralight manual wheelchair or group 3 or 4 powerchair would be provided to an individual

with a spinal cord injury, that medicare beneficiaries and the uninsured were the least likely group to get the standard of practice chair, to get that ultra lightweight chair or to get that multiple function powerchair. So does that mean that we’re, we, we, us, does that mean that we are providing technology based on the payer group, or based on the patient needs? You know, we need to think about what’s driving our practice. What does that mean for access to optimal technology for people aging with a disability? People coming into medicare, what does that mean that they need to do, or that we need to do as an organization and as a group of professionals? I means that sometimes we need to advocate. It means that we need to speak up, and people who are in wheelchairs need to speak up and advocate for the right equipment and explain why it’s important, why it is medically necessary, and why it is functionally necessary, and what impact it has on life Here’s a case that talks about that. A fellow named Robert, young guy, injured at 14 years old, C5 ASIA A, he’s now 32. so he’s had some significant aging with his disability already because he was injured at a young age. He is an artist, he paints using his mouth, and he does stand up comedy. So fortunately, he has a stand up power chair! [laughter] And it’s over 10 years old now, so it’s, it needs to be replaced. But as a result of the equipment use, he has reduced spasticity, he has increased bone mineral density, he bowel and bladder function and breathing are improved with the use of the stander, he has improved community participation, he’s working, and now he’s trying to get this equipment replaced and funded. And that’s a challenge, that’s tough You have to be willing to fight the fight So here he is, fist bumping with senator Ben Cardin from the great state of Maryland at the, in the senate office building, he participated in the NRRTS CELA event last year, and so he got to speak to his senator and tell him why it was important. And wouldn’t you know, as a result of this visit, senator Cardin signed on as a supporter of the bill. [applause] Yeah, isn’t that awesome? We can all do that! We can all do that. Whether you go to DC to do it or whether you go and just write an email, just make yourself heard. It doesn’t take that much time and it’s very rewarding and it’s very important So thinking about Robert, thinking about our whole milieu and context, things to think about are relevant to aging with spinal cord injury include the current chronological age of the patient, their age at injury, right, he went from 14, now he’s 32, so the duration of the injury, the age cohort, or the social, economic, and medical context around their individual little picture of their individual spinal cord injury, their big picture, what’s their big picture look like? How does the big picture change for all spinal cord injured patients as equipment improves? You may have noticed, how many people have been providing equipment or have been involved in this for more than 20 year? Has equipment improved? You betcha. You betcha. So it’s, that makes a big impact. So does the ADA. We’re at the 25th anniversary of the ADA this year. So that helped make the whole environmental context of the world that we live in more accessible for everybody which is a wonderful thing Unfortunately, funding lags behind that, so we need to speak up and we need to have a voice about that. It would be great to see some long-term use studies of people in wheelchairs and how that affected their individual outcomes So for anybody that’s a researcher, that would be a great study to take on. I wish I had that skill but I do not We do have the ICF model now, and in terms of looking at the big picture around somebody’s injury, we can see that down here, wheelchair specifications and equipment type does have an impact on the person’s overall health, and their overall participation. There is

a big picture, everything is connected. So maybe some of these complications of spinal cord injury with aging could really be ameliorated, really be reduced, with some equipment earlier on after the person’s injury so that over the long-term, over the long-term they don’t has as many of these secondary complications that they have to deal with I want to show you another case study. This man is amazing. This is Ed Eckenhoff, is the president emeritus, he founded the national rehab hospital where I worked for most of my career. He’s 70 years old, he was injured as 20 year old, so he’s been 50 years injured He’s super active, he founded a hospital I couldn’t found a hospital, are you kidding me? He’s a T12, ASIA A injury, and his only complication since his injury was he fell brace-walking. He’s been brace-walking for 50 years. He’s the only person I know who’s ever done that. I know brace-walking is not a long, you know realistic things for a lot of people to expect to do, but it’s interesting that someone who’s put his body, maintained his fitness level, experienced the dynamic loading on his legs, experienced being active, has been able to do so well for so long. After his fall, he had an ORIF of his fractured leg, and the only changes we had to make in his technology after his fall, were he needed a different pair of KAFOs and shoes because his legs were a little bit different in length, and we needed to put a wedge under one side of his office chair because he transfers, he sits in an office chair at his desk, so we made a little lateral wedge, we put a ROHO pad on top, and he’s, that keeps him in line, again because of that hip, uh, hip joint being different than the other side. He got two ultra lightweight wheelchairs, again, he can afford it, he’s president of a hospital, and he keeps one at his place in Florida and one in DC, and he really only uses those after he’s played golf and he’s tired. Otherwise he brace-walks. And when he’s at the hospital he uses a scooter to get around. That’s his equipment that works for him. I don’t know anybody else like him, but here he is, standing, at the age of 70, independent brace-walker But not for all of his distance, that’s why he uses the scooter in the hospital, you know he’ll walk from his office to the car, or use the scooter to get to the car and then transfer out, but he’s tremendous So his keys to success, and again I’m thinking about cohort here, his father was a doctor, his mother was a nurse, he was a competitive athlete so he’s always pushed himself, he was, you know, hospitalized 50 years ago, and while care standards were very different then, he was in the hospital for a long time, and the expectation for him was that he was going to get up and go. So he graduated on the dean’s list from college, he’s had the financial resources to access equipment and services, he married a woman who’s an OT, you know, so he’s got kind of all the bullets that you want somebody to have to succeed and that’s certainly helped him. And then he’s had access to rehab professionals who can help him continue to be as active as possible Some of us think that’s why he built the hospital, so that he could come and get care. But the message is, don’t fall into the trap of settling for limitations. Don’t get in the habit of providing equipment just because it’s what’s funded, it’s what’s easy, you know have a reason, have a reason. Think about what the optimal health benefits of the equipment are, what their risks are, and provide the equipment that’s going to meet their needs in the long-term So practice best practice is what I’m saying, or suggesting. Believe in what you do, know what the best practices are, it’s our responsibility to provide those, to translate that into the equipment that we provide for patients. To believe in what you do, and to do what you believe! Let best practice govern your equipment provision, not necessarily funding because funding policies and best practices are not the same thing, in case anybody hadn’t picked up on that. And you have to be willing, and ready, to advocate for your patients. To write the appeal letters to go to bat, to explains to the patient how to use an ABN, it takes

extra steps, but it’s really important. I’d certainly want somebody to do it for me or for my family member So again back to the NRH motto of adding life to years…with the right equipment at the right time, people can be as active and functional and participate as much as possible over the long term. So what Ed would say is “If you don’t shoot for the 12th hole at August, you’re never going to get there!” So here he is! [applause] Isn’t that cool? So it can look like this, or it can look like this. Either way, you get there. Either way you get there That’s all I have. Questions from the group? Yes, sir? [question is asked] Ginger: The slides were available online, I submitted a handout that you can upload, so yes, that is available Other questions? Bueller? Bueller? [laughter] Oh, there’s one here. Don’t be afraid Q: Yeah, you talk about standing, the benefit of standing a lot. If someone who has been in a chair for quite a long time and never was interested, what do you do, do you get them to bone density tests or, what would be the clinical response? Ginger: Ok, so for someone who hasn’t used standing for a long time and who’s been in a chair for a while, it is a good idea to get a dexa scan, to ask them to see their doctor and get permission to do that. The funky think there is there’s no specific number that’s a guideline for bone mineral density You know a physician still has to make a judgement when they’re looking at the X-ray of “yeah that looks good” or “no, not so much,” so there’s a clinical judgement factor as well But range of motion is also important. I have a, I recently had a patient who’d been injured about 8 to 10 years and he was a fairly young guy, he was in his 30s, late 30s, I want to say, and he really wanted to stand. You know he had kids, he was thinking ahead, he was thinking about, “gosh, my son’s football game, I’d like to be on the sideline, my daughter’s wedding, I want to walk her down the aisle, I work, I do things, I want to be participating I want to stand.” so, we got permission from the doctor, he felt that it was going to be ok for this particular guy, this guy had a lot of spasticity, so there was, he did have muscle activity because of the spasticity stressing his bones, so that could be a factor, and he was healthy, his range of motion was good, and so we got him in the stander to try, and his first time up, he was like “whoa, I feel tingly.” He was a little dizzy. So you know, it can take time to get used to the physiologic demands of standing. Remember back at the beginning, physiologic demands of standing are greater than that of sitting, that’s why all of you are having big trouble, you’ve been sitting here for a while. So it’s important to give people time to get used to a device to see if they’re going to be successful at it. If a person can have it, a lot of times most seating clinics do not have a standing chair there, so you have to pull in, get some help from a rep to bring the chair to the house, and it’s going to take, you know, it’s going to take an afternoon for sure for them to use it, maybe try it again, maybe they need some work in therapy first. But again, if they’re willing, if they want to do it, then I think you can get over those hurdles. Other questions. Yeah? Oh, my lady with the mic is running to you Q: Hi. I was just wondering if you’ve had success getting insurance providers to fund seat elevators, or when they’re denied, what the next route is that you typically take Ginger: Yeah, yeah, this is really the hard part. And it depends, is the answer, as far as the insurance companies, right? There are some that say, flat out, it’s not part of the coverage policy, we’re not going to do it. Then sometimes you get that denial and there’s a secondary insurance that you can go to. Or the patient is willing to sign an ABN and say “I’ll pay for this upgrade, my insurance will cover this much, and that gets me most of the way there, and I’ll find a way to raise money for rest.” That’s what

this guy that I was just telling you about did. Sometimes you can work with the dealer or manufacturer to help with the pricing, depending on if somebody has a demo to sell or something like that, that can help bring the price down so the patient doesn’t have as big of a reach. And then you have to be ready to fight the appeal process. So you get your first denial, you find out what it says there, specifically, and then you use their language, that the insurance company is using, and then you can present your argument I know with Permobil, we’re developing a standing resource, you will be able to go online and get information about appeal letters to help you write them, as well as LMNs, as well as research studies on standing, so that you have that ammunition to go get them. Yeah Other questions? Q: In your clinical experience, I’m sure you must have come across some quads, we call them like super quads, that hook their hands for stability, and in providing back support for them after a while, there’s resistance to actually getting a high support chair because they have to hook, like, what do you do in those situations? Ginger: That’s a, it’s really hard, you know you don’t want to take away somebody’s function, and if that’s how they do a certain activity, then, you know, finding a way to make that happen is important. I’ve never won the battle of saying “well you just can’t do that.” Because they need to do it, they want to do it, they’re going to do it. So I had a guy who was a tetraplegic and he needed a higher back, he had some bad scoliosis, and we just had to have the back be a little bit lower than I would have for everybody else. You know? And make sure that the push handle was in a place that he could get it to on the one side that he did hook You know, so, there’s some compromise. There’s some compromise sometimes. Sir? Q: Hi. My names John, I’m with shopper’s home healthcare in Calgary, Alberta, Canada. Hi, I have several clients in the community that would highly benefit from power mobility for the reasons that you went over today, but they’re very reluctant to make that step And I’m just wondering if you can offer some strategies or ideas or suggestions for how to help them make that leap without sort of pushing too far and overstepping our boundary Ginger: M hm. I’ve had clients who, you know, are on the fence about, “I want to stay in a manual wheelchair, I may need to go to power, and they want your opinion, so sometimes I give my opinion if asked, and then I follow it up with a suggestion of “How about if we can, can we set up a way for you to try this for a couple days?” And sometimes that helps them make the decision. They can use that power wheelchair in their home for a while, if we’re really thinking long-term this would be a better solution for them, they can use it for a little while and see, “gosh, when I get on this carpet it is a whole lot easier for me than when I’m trying to push on it.” And they just need to see how it’s going to integrate and how it’s going to work in their lives versus making a snapshot decision in a seating clinic. Some people just, are mullers, they’ve got to mull over the decision, and that’s ok. it’s a huge decision, so I’ve found that having a demo in the home for a little bit is a good way to make the decision. Or they may find out, you know what, I can’t fit this in there it’s not going to work, you know, and that’s fine too. At least you get a solution that they’re going to be happy with in the long-term. Another great question You’re getting your workout today. That’s ok walking’s good for you Q: My name’s David and I’m with Superior Mobility in southern California. And so, more a comment, first, thanks for being optimistic. One things that, I’ve been doing this for 33 years, and we need to be more optimistic. And I’m sorry to say that I hear so much pessimism at this function a lot of times, and it’s all about funding. I think we’re the professionals, so what you’re saying today, and the fact that you included a couple slides for people to see, especially the therapists, that look, a man, the doctor, and the artist. Look when they took a very progressive, proactive approach to their life look what the difference is,

and problem that we have is everybody wants to just go off their funding. Or for us that are ATPs, we’re not salespeople. And many people just go out and sell a chair. And what you said at the very end, I’ll do that a lot I’ll load a chair out for a couple of days It’s the best thing you can do, because then somebody there in their own terms can do that, but I mean being honest with people and being more real about things, and you can do it empathetically, so people understand it. People want education and we’re the ones that are the professionals that should be doing that, and it’s not being done enough. And again I love your approach and what you said, I’ve got a quad right now that I’ve worked with for 25 years, and she now has got the real big problem of her, her skin has gotten so flaccid, and there’s just no muscle whatsoever, she’s lost everything. And she’s got a pain now that’s just hard to explain, so i’m allowing her to try a lot of different things, I mean it’s the only way to go because she, we don’t know what’s next, and to attempt to avoid surgery. So again, thank you for that. Last thing is that I think that standing is incredible, and the one therapist was asking about the patient lift, I mean as a dealer, they’re $2,800 retail, I do a lot of Permobil, we sell them $1000 off at 1,800 bucks, we’ve taken them down to 1,600 for people, we’ve done even payments, any way to get them that extra feature if they need it, I think it’s, many of us should be doing it a lot more, and all we have to do is get denials and we can do it for everything. So the insurance world doesn’t pay real well, but when you offer it to people and explain it to people, they’re willing to go, to me, I’m finding, it’s one thing I’m finding, it’s one thing I didn’t do enough of when I was in the field So don’t be afraid to open up your mouth and share with people. If you don’t, they don’t know Ginger: Thank you for your comments. Yeah, there’s nothing better than the grateful patient, and then they’ll be your patient forever They’ll be your patient forever, you’ll keep those people [unintelligible comment] Ginger: Yep, yep, in many cases it’s really not complication of spinal cord injury, it’s complications of sitting, if you think about it