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<h3>Transcript</h3>
doing so many things virtually but this is just kind of the meat and potatoes boy it's glad to be in a room with you
folks I've been a physical therapist now for 28 years all of my time has been with University of Penn in movement disorders previously served on the board for cure PSP so I know intimately these atypical parkinsonians and this cope Clinic I can't tell you enough about it and myself and Dr Dake and Dr Irwin and Suzanne will be talking about it a little bit more in a group session so please if you do have other questions that come up for that um please do let us know so what I thought I would do is just talk about sort of different deficits or impairments or symptoms that may be common to the particular disease process you are living with it may not be but these are things that we get questions about all of the time as therapists I have the pleasure of working very intimately with our occupational therapist and our speech language pathologist and if you've worked with any of us you know we're all about keeping you moving keeping you going there are many things that the atypicals Rob us of and one of the things that we hate about this is that it keeps you from doing the things you love to do if you've ever come to our Clinic one of the most important questions we ask you is what do you do for fun and that's one of the things that we want to be able to help you with doing so that being said I thought I'd start with blepharospasms blepharospasm is a dystonic event in the eyelid which really prevents people from having the ability to open their eyelid can be really disabling if you're walking if you're reading if you're crossing the street if you're just sitting they're having a meal so this is something that is mostly managed through our movement disorder docs and nurse practitioners usually through using Botox but there are things out there that are available over the counter and you can also get through your regular optometrist or ophthalmologist this is called a ptosis eye crutch and basically what it is is a small attachment that just goes on to a regular pair of glasses that you have or you can get a pair that don't have any prescription in them and they help to keep that eyelid open for people you can also manually just take your thumb and give a little shove sometimes and that can be helpful for folks but again if we can't see we're not going to be able to do the things that we like to do I am not promoting any of these particular devices that are up here I just want to let you know that these are companies that we have worked with in the past and have had success with gaze exercises so again we don't have a ton of research and I wish that we did but we know that the atypicals are a smaller population of the diseases out there as compared to Parkinson's and therefore we don't have a lot of research numbers in that but what we do know is that those individuals particularly people with PSP do have issues with tracking with the eyes particularly going down eventually going up and for some folks going side to side so there is some research out there that is pushing forward with gays exercises so you know if you've been to a physical therapist or a physical trainer an exercise group we're going to tell you to exercise the legs the arms the trunk the core all those kind of things but the muscles also in the eyes could probably use a little bit of help so visual tracking exercises we do with our clients recommend that people do these daily right so that you're doing them just like you would do other exercises this second one here is Post-its I've put on the bottom here a little picture of Post-it notes and we have letters on them and what I have my patients do is stand in front of those Post-it notes so we're also working on posture we're also working on stability and balance and then we're trying to make it fun as well and I'll say just with your eyes I want you to look and spell a word for me so looking at those letters there we can spell cat we can spell matte we could spell team so again it's not just the boringness of looking up looking down looking all over we're actually using some of the brain Reserve too so we're working on some cognitive function as well simply finding objects in the room sometimes I'll have people just stand in one spot and I'll say all right let's look you know today as a very heavily read day so I might say let's look at all red objects so I might look here at that table I might look over there at that lanyard I may take my gaze over there and look at that sign I may have people doing it while they're walking we do need something called anticipatory visual gaze and it's something that happens that we really don't think about and our folks with PSP do lose the ability to do this so now you have to think about tracking and looking when you're moving so we do practice that with folks as well so one of the things that a lot of times incorrectly you may have been told if you do have PSP or a condition that impacts how you track the eyes that if you just tilt your head down then you can see things better that's actually incorrect in a lot of the population with PSP this actually provokes a different response called the doll's head response if you ever had one of those little old-time dolls where you tip the doll this way and the eyes went the other way when you tip your head down the eyes go up so it actually isn't that helpful to just tip the head down one needs to actually think about tracking the eyes down and looking down to make that happen and I would say for folks who are newly diagnosed this is something you should be working on now we don't want to wait till it gets really to the point where we can't track let's start thinking about strengthening those now the other thing is a simple game of I spy how many square objects can I find in this room how many circular objects and then lastly things online there's a whole world now we all know with covid how many new Games and Things Came Upon Us online so looking at things where we actually put color into things this is a game that we use a lot in our Clinic called pictures where you have to search and see if you can find certain things now that being said a lot of us as we age have difficulty with smaller finer print so we do use a lot of magnifying glasses and things to make things larger for us to see but please I'm here to tell you don't discount the eyes we still want to work on those as well bed Mobility is probably one of the biggest issues that we hear from folks as they start to lose that ability with moving in the middle of the night being able to get comfortable being able to get up and go to the bathroom Dr Dake alluded earlier about some of the issues with the bowel and bladder with MSA it can be common in all of the atypicals and the ability to have that Independence to be able to get oneself up even if it's just sitting on the edge of the bed perhaps to use a urinal or to walk to the bathroom or simply do a transfer to get into a bedside commode is very important so a lot of times if we are not able to fix you physically meaning we can't get you into a better position or we can't help you to get those muscles to do what they need to do we look to well what can we change in the environment and I think everybody's pretty aware of this bed rail very common very easy something for people to be able to pull on because with the bed it's all soft and smooshy and nothing to hold on to something that's actually newer that just came to us here is this tubular sliding sheet it doesn't have any kind of fancier name than that if you just Google it or you go on Amazon you'll find this you it's sort of like the feeling of kite material and I will tell you it is the easiest thing to slide someone on we've been using it to help people get in and out of cars helping people roll over so if you are a care partner and you need to help your loved one to move around in bed this could be very very helpful for you car transfers for every single person who's out here you probably came in a different car there's cars that are high that are low that are too small that are too big you know it's really scary for a lot of people and you know I've watched a lot of folks outside of our Therapy Clinic because we sort of have a fishbowl of Windows around us and I watch people um you know really struggling with getting in and out of cars if you have been taught to hold on to a car door please don't do that the car door moves you can get your fingers stuck in there it just really isn't the safest way to do it one of the things that we found that's the most helpful something called the handy bar when you open your car door there's a little hook where your door will naturally latch onto the side of the car this simply hooks into that and gives you something to stabilize yourself on because it's usually that push to stand that's the most challenging for our folks to be able to get up this is the safest way to get in and out of a car you back in the days of stepping in with one leg are gone I try to not even do that to get myself safe with that it's better for the back it's better for safety it's better for balance the other thing that I would not recommend that I see unfortunately a lot of Care Partners doing is standing in front of their loved one back and I've seen loved ones go down on the ground and I've seen the person living with the atypical go on the ground I wish I could give you every trick that I have but you know what we need to do is make sure that each and every person living with an atypical is seen by a member of the therapy team so we can really individualize this to your needs gate safety we know that all of the atypicals have some component of a balance or gait disturbance that goes there we do know that none of these are able to make us go 100 back in time even with therapy we're not going to be able to make the gate 100 better we're not going to be able to keep people from falling 100 of the time what we try to do is minimize these problems a lot of folks end up with injuries to the arms to the back to the neck because of the way loved ones want to help we naturally want to grab someone by the arm we naturally want to hold on to someone by the hand that's really not the best way because it's the furthest point away from the trunk and what we want to stabilize is the hip and pelvic area and the trunk so I really would say to most people if you're working with someone who is starting to have walking problems a gate safety belt now some people will tell me well they're really uncomfortable sometimes they cut into me there are soft and fuzzy ones there are ones you know back in the old days when I started school they look like just a safety belt from this from your car right they were really uncomfortable things like this are very soft and plush they even sell a vast version so if you have someone who has really poor upper trunk control you can hold on to that these are also great for helping people just to stand and transfer it doesn't mean that you need to hold on to your partner all of the time but sometimes just to have that little bit of comfort there to know that you can grab them is going to help them to feel much more secure as well so walking devices I am thrilled to see many individuals in here with some great devices there's nothing that that frustrates me or probably breaks my heart more than when people say I don't want to depend on a device I don't want one of those devices they're going to make me look old what will people think if I'm using one of those devices and my retort is always what are people going to think if you keep falling five times a day I think that probably looks a little scarier and worse than someone who's simply using a device I see lots of people out here wearing glasses we wear glasses to help us see better a walking device simply helps you to walk better and the truth is you are going to be dependent on it if it helps you to get where you're going safely I am all for it so there are many different devices that are out there again I am not here to plug any of those I think one of the things that people don't think about early on and maybe should could be the trekking poles we're big fans of those because they have big fat broad tips they help people to stand up a little taller and a lot of people like just the way they feel and that they can still have their Mobility feeling like they have that reciprocal movement with the arms the beauty of a walker or a Rollator and I'm going to point out this gentleman right here his doubles is a chair so thank you we put the brakes on we turn around we sit down so if we need a rest if we need some support if we need to carry something we can also put stuff in there so these can be really truly Life Savers now I hear the other part of that story where people say to me well I can't use a Rollator the Rollator goes too fast and it gets away from me I'm here to tell you that these rollators cannot move on their own they are not motor driven there are no ghosts moving these things the only reasons these Walkers go too fast and get away from you is because you're not using them correctly so if you get together with a good therapy team who could teach you to use the correct Rollator and there are ways we can slow down the breaks we can teach you ways of breaking up your steps there's a whole host of things that we can do to help you with that so please don't give up on those devices um I do want to go back to I think I can go back yep um and I may I may be getting ahead of myself but there are other ways of moving right just because someone can't walk as well as they used to doesn't mean that they can't get around with a power chair with a transport chair maybe sometimes we use a wheelchair sometimes we walk you can have all sorts of flavors of Mobility so again thinking about ways to stay active how do I do what I love to do and how do I want to do that well if it's a device that's going to get me there then we're going to help you to do that I wanted to talk to you also about the excuse of not exercising because you can't get out of the house that excuse is gone now due to covid so many programs came out this was one of the great things that did come out of that there are some things out there that I do recommend for you because I have vetted them cure PSP TV has their own thing with Wellness Wednesdays please make sure you take a look at that that is a great thing to do and I'm also going to give a plug to the Parkinson's Foundation this is my partner at work Joellen Fox she has put Hearth a whole bunch of different exercises many of them in a seated position where you can still get your heart rate up and you can still stretch your muscles you don't have to go to a gym and join an aerobic exercise class in a stepping class in a spinning class to get your heart rate up there are ways to do this so if you have time to do that and I think we all can probably find time in our days to put in maybe 20 minutes could you give me 20 minutes how many people think they could give me 20 minutes a day to exercise I want to see every hand come on even if you're lying to me just make me feel good come on thank you it's going to help you in the long run because I have really bad news for everyone in this room since you've been here we've already aged two and a half hours we're all aging so you can't forget that the simple fact that you're alive your body is degradating and you can change that by staying more active so let's think about that as well home exercise equipment too you can have a lot of fun with not a lot of expense I know that a lot of people have seen these little bikes where it's just the petals and you pedal through they're nice if you want range of motion in your knees and your hips a little bit they're not going to give you a solid aerobic workout what you're looking for is something more like this version that's up there you want something where you can really make some movement happen where you can really get that heart rate up there the other thing that we love we are certified in a technique called Rock Steady boxing and it certainly doesn't have to be Rock Steady it could be just simply any kind of boxing we at our Clinic bought everything on amazon.com because that's the best price that's out there you can do a full seated boxing program from your chair you can kick a bag you can punch something you can punch an atypical parkinsonism right in the kisser nothing feels better than really taking that that power away from that and giving it back to you again I think it's a great idea though that you meet with your therapist first to learn the correct ways to do these moves because you can hurt yourself with an exercise program these small little balls that I show down here this is a Thera ball they come in all different sizes and weights this is a great thing that you can do with grandchildren with children Heck if you even have a dog you can throw a ball too and bring it back I'll take that we need to get folks moving the last picture I have on there these are called boom hackers w-h-a-k aers these are typically used by pediatric therapists but we have grown to love them in our Clinic because each of them make a really neat tone and if I need you to work harder than you're actually working you've got to give me the sound of the boom and I have to hear it and then I know that you're working hard so hitting those together hitting them to other things hitting them to someone else who's holding Boomwhackers you can have a really good workout from that the other thing I wanted to touch upon because this is really common again with an aging population as well as with the atypicals particularly with MSA the urinary and bowel issues I know that you think when you have to go to the bathroom a lot that you probably shouldn't drink as much water and a lot of people come into our clinic and they don't drink their water they hold back on it well the only thing not drinking water does is dehydrate you and make you more likely to pass out okay and we already know with MSA people suffer from that condition where their blood pressure drops very low and they can get really dizzy your bladder is a smooth soft muscle if it is dry and irritated it gets angry with you if you keep it nice and hydrated it doesn't get angry with you meaning that if it's smooth and soft and has water in there it feels good if it's overly dry the next time you go to drink it thinks you may have drunk a gallon of water when you only had a sip of water so it's really important to get on a good drinking schedule good nutrition is important too right if we want the bowels to work well we have to think about what we're eating how we're preparing the food and where we're getting that food from we've got to avoid those processed foods we've got to get those good fruits and veggies in there avoiding alcohol and caffeine later in the day before bed super important because that is a stimulant for the body there support stockings during the day this can help I know people aren't aware of this but by helping with the fluid that's down in the legs it actually has been shown to help decrease the amount of times you need to get up at night to use the bathroom so support stockings I know they're a pain to put on and take off but hopefully you have a really helpful care partner with you who can do that for you 've probably never heard of this term but a toileting schedule most of us wait to go to the bathroom until we feel it it's really important for folks who are having Bladder incontinence urgency frequency to go to the bathroom at set times that again it's a muscle we can train the muscle and then we know that we're in control and the bladder is no longer telling us what to do there are lots of incontinence products that are out there now so please shop around there isn't just one right one there are great ones for men as well as women I know women always get the bum wrap that we were the ones who needed it for so long it impacts men just as much so take a look out there the last point is pelvic floor therapy there are physical and occupational therapists who this is their specialty this is a real high knowledge based group of therapists who teach you how to work those muscles how to train those muscles and how to facilitate new movement patterns within that so that you can have more control both of the bow and the bladder sleep issues another big one if you're not sleeping well you're probably not moving well and our occupational therapist does a heck of a job with talking to people about the importance of regularity of sleep we use the term sleep hygiene and that means go to bed at the same time get up at the same time if you are tired and a lot of us are and a lot of us nod off in the middle of the day don't do it in the chair like this or like this go to bed and lie down it's okay to take a nap all right just do it safely you want to prep for bedtime have a routine okay at this time of night this is where I turn off the television I turn on some music this is where I go and I wash my face and I take my contacts out whatever your routine is to set that up now I sit by the chair next to my bed I'm going to read for 15 minutes and then I'm going to get into bed limit the liquids at night time that's the only time you really want to do that all right to help with that that nocturia a cooler bedroom temperature it is better to have on heavier pajamas and a lighter blanket than the reverse because how many of us get tangled up in really heavy blankets we do a ton of training with people they say their problem is moving in bed but really their problem is figuring out how to get in and out from under those heavy blankets so again a warmer pajama itself and a lighter blanket there is a company out there called Comfort Linens it's a group that's based out of Canada and they make these really soft slippery bed linens that can be helpful for people to roll over in the other thing is I know we're all a digital world now but if there's one thing I've learned from art OT is get off of your phone get off of your tablet and get off of that television at least a half an hour I would say maybe an hour before bed it really does over stimulate you and we need to have that stimulation really cut down don't forget about music don't forget about meditation and thinking about our mood if you're in any kind of counseling services or you've done meditation or you can work on deep breathing saying a prayer humming a tune reading a poem something that just quiets down your body and your mind dizziness I mentioned this before something with orthostasis or orthostatic hypotension where the blood pressure just really drops I said this before but you've got to drink more if you want to be less dizzy you need to move more all of you right now have been sitting for way too long and luckily right after me you're going to have a break and we're going to get up and move around super important even if you're just sitting there you should be kicking your legs you should be opening and closing them you should be tapping pumping you can squeeze am I going over time or I'm I'm doing okay she's traveling toward me I get nervous okay I'll speed it up you do need to monitor your blood pressure so there are home versions of these things slowing down when you move to stand there is a response that folks with PSP have called the Rocket response where we tend to stand up really quickly that's problematic and a lot of people with Falls and with blood pressure and then sodium so you have to talk to your doctor I'm not going to tell you to add anything to your diet but sometimes that can help we were recently teaching down in Atlanta Georgia and they told me the three p's for Atlanta Georgia were pork rinds pickles and potato chips and that's how they get their folks to do that limiting backwards Falls number one thing I want to tell you you have to work with your therapist if you stand in front of something and you go to open it that's where you fall backwards this slide really shows you the importance of standing to the side of something and to holding on to something so it may not be that we're actually necessarily improving your balance but we're changing the way you're doing something to actually prevent a fall from happening same thing with limiting the forward Falls how many of us will reach for a chair because we see it and then our feet get really small and then we turn and we plop into the chair we have to worry about those forward Falls with injuries so we have to think before we move freezing of gate the main thing that I want to tell you here when your feet get stuck and you can't move and it's not just freezing of gate it's freezing of sit to stand it could be freezing of pulling your pants up you have to remember the four s's stop stand tall take a deep breath shift your weight step again if you fight the freeze the freeze will come at you twice as hard and the freeze will always win managing tone these are just some pictures of ideas these are gel inserts that you can put in between your toes there are different braces that are out there there are different stretches that are out there again I say with the caveat you need to talk to your physician and you need to talk to your therapist about that for you guys who are supporting everyone who's living with the atypicals please ask for help you don't have to be alone it's really hard to be a care partner it's really can be frustrating you can feel angry you can feel depressed you can feel all sorts of things and you're allowed to feel all of those things so please look for help that's out there remember you're not a nurse and a patient you're a husband and wife you're a daughter and a mother a daughter and a son and we really want to help facilitate that even though we're teaching you to help we want for you to be able to find joy and fun in every day of what you're doing these are some tips on here because you're saying okay great Heather I want to come to your Center I want to go to cope I want to see Dr Dake I want to work with all of you but I don't live anywhere near you will people have copies of these yeah we're all gonna get are you awake yet um yes we're going to be emailing the slides to everybody who had registered after this I should have said that excellent good so don't don't have to worry about furiously writing this down but there are resources that are out there that can help you if you're not able to see us at Penn we also have a list of local therapists that we use in our area you can absolutely reach out to us and I just want to thank you for your time we are here to help you just like Dr Dake said if you're interested in just therapy alone if you already have you know your medical services and you're interested we see a lot of people for a one-time visit where we call it the triple threat you see PT OT in speech and then we help you to kind of set up for therapy services that are in your area so thank you so much for your time and we'll take some questions now such Pro oh gosh such practical tips thank you so much I learned so much about that we do well we are running a little over but again we're all adaptable with this so we still want to be able to give you all at least a 15 minute break so if we could take maybe one or two questions and again Heather will still be here today there'll be other opportunities don't all jump in at once oh thank you um oh well thanks for the presentation um you said something about walking backwards I think when you were talking about getting in and out of a car I didn't really understand if you could give a drop more detail on that so about preventing the Falls backwards showing someone holding let's go back so someone I think pulling out of the car with two hands walking backwards no keep going so when you were talking about helping someone out of the car and how sometimes with you yes yes yes please don't do that that was my advice if someone is getting out of the car and you are the person who is helping them front of them pull them up fall backwards there's much easier ways to do that with standing to the side of someone and again you can be trained but that was my advice was don't do that good I didn't even see you behind me thank you heather that was a lot of good stuff um maybe I missed it I don't know it was on Dr Dyke slide I didn't see nutritionist in there anywhere and maybe it comes hand in hand with the speech person or OT I don't know because what we struggle with with my husband Jack is as the swallowing gets worse we have to modify the diet no crunchy doing smooth things but just need more I think help with nutrition things I agree with you 100 and the answer is we don't have a nutritionist they're very hard to find um and what we usually do is the ALS Association always has a nutritionist on their team and we usually go to that person and ask for recommendations in the area the next person that we talk to is our speech language pathologist it tends to be if you're looking for nutritionist you're looking in the realm of cancer diabetes and ALS and that's where you tend to find the most I can't speak for cure PSP do you guys have a booklet or anything on nutrition I'm not I don't I don't believe we specifically have one on nutrition but that it I mean it is it's that same challenge of it there's not a lot of nutritionists out there who understand these diseases but typically it's around speech therapy to to talk to you about like Diet modifications and then a lot of times we I've heard nutritionists recommend the Mind diet sort of a Mediterranean diet high protein um I would I would also tell you look at the Parkinson Foundation they have a lot of stuff on nutrition there specifically for PD but you might be able to take away something from that it'll be helpful we've looked a lot with that and stay very connected to the Parkinson's a lot of it is sort of trial and error with family members too yeah yeah a big thing now is just with swallowing worse eating gets so slow so you know they've all cued me and go like let him try for an hour and then assist with eating so that's what we're too is there any component of the multi-disciplinary program too where you have like just training and tips for the Care Partners oh that is a great so at least with us with ptot and speech we do them we do make that a component so our OT will bring in different devices I will bring in different rollators different Walkers and chairs most of the time because it's such a limited session where they're seeing so many other people will say hey let's get you back in the clinic and do this or let's get someone out into the home to kind of pick up where we left off but I always say try it before you buy it especially with these devices and no offense to any of the physicians in the room don't let your doctor tell you what role later to get they come to your physical therapist thank you thank you we'll take one more question and then we'll go to a break yeah she's working hello yeah just a thought on the sleeping and trying to get yourself de-stressed so you can crash there are some really great little gadgets out there today these Alexa and Google things um I'm stressed to the max with coping with all this stuff and I love how with Alexa I can say play ocean waves and it's a sound of waves or I can say play a rainstorm it really helps and it's really and honestly it's just a verbal command that's it thank you great advice thank you everyone let's enjoy a break we'll be around for more questions later
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