Balance & Gait issues in Parkinson's disease: 1 step at a time
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hi everyone we're so excited to have you join us for this webinar one step at a time managing gate and balance issues in
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Parkinson's I'm Becca Miller I am a person living with Parkinson's I was diagnosed when I was in my late 30s my
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daughter was nine months old um I'm currently a single mom working as
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a psychologist at the Yale University school of medicine and I'm a member of the Michael J fox Foundation patient
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Council um in September of 2021 I had DBS and had been learning to navigate my disease
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after this procedure one of the best pieces of advice I received when I was diagnosed is to take control of my
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disease so it didn't take control of me and as we know PD impacts our mobility
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in in big and small ways um increasingly we're gaining understanding of therapies and
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techniques that can help us improve our gait and balance and tips as well that can help informed
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Care Partners on how to support us that is what our expert panel is here to share with you all today
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so during the webinar if you have a question you can type it in the Q a box
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near the middle of your screen Foundation staff and our panelists will get to as many as we can
Panelists
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and if you want other helpful information or want to download the slides check the resource list on your
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screen to add captions in English please click the CC button on the bottom right of the
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media player on your screen like all of our webinars this session will be recorded and available to watch
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On Demand afterwards so we've got a lot to get to so let's get started first
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let's introduce our panelists we're so lucky to have three experts here with us today
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so from the clinical perspective we have Dr Alfonso Fasano he's professor and
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chair of neuromodulation and multi-disciplinary Care at the University of Toronto more from the research perspective we
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have Dr anat merrillman she's an associate professor at the Sackler school of medicine at Tel Aviv
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University and giving us um both the research and the physical
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therapy perspective is Dr Terry Ellis who's an associate professor and the
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chair of the Department of physical therapy at Boston University as well as the director for the center of neuro
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Rehabilitation did I get that right welcome um everyone it's so great to have you
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here today um so if you can go to the first slide
How does Parkinsons affect gait
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um so how does Parkinson's affect gait and balance I'll say for myself that one
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of my first symptoms was a foot drag and and that was something that was with
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me for years you know starting out very slowly and then increasing um honestly I first attributed it to
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laziness that I just wouldn't pick up my foot which is in retrospect really is kind of strange but
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um you know when things come on gradually these things happen can you um talk a little bit about just how
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Parkinson's affects gate and balance uh Alfonso do you want to start
Early signs of Parkinsons
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yeah sure with pleasure sometime thanks uh for having me and hi everyone
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um this is a an important question and the answer Theory will be very long I'll
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try to make it simple also because uh uh it depends on when uh where uh this what
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stage in the disease we're talking about this these problems but in general um in Parkinson's disease there's a
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an inability to produce ample movements or large movements so for this reason
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one of the early signs of gay involvement is short steps and sometimes these short steps become so short and
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also the video of the person to um Elevate the food is impaired as actually
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described by you as well and this becomes more of a shuffling type of gate
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that can also lead to Falls quite soon because of tripping simple simple like that also when uh
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um you know doing stairs if the elevation of the food is not big enough so this is very early signs actually
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even earlier than this is a reduction of the arms winging when we walk we we move
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our arms and an early a very early sign is actually a reduction of this movement especially on one side and often people
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happen to see orthopedic surgeons initially because they have a shoulder issues and that's actually coming from
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an inflammation and arthritis on the joints because this movement is lost has
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been lost for a few years and therefore there's not enough lubrication of that joint during walking
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over time this province can worsen and freezing of gate is a big issue and
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we'll talk about it and also the different phenomenology of freezing of gate and also balance can be affected
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balance is a more complex motor strategy because it's actually tapping into other
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functions in order to be in Balance we need to be focused our attention needs
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to be there we should be careful especially with what task but balance
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also relies on our ability to move our legs if we are perturbated if there's a
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mechanical push for example on our body sometimes a way we have to keep our
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balance is just to step and stepping we don't fall so this is actually a very
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nice example of our gate and balance usually go together and sometimes to fix balance we need to fix
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hmm wow and that that reminds me of every time I go to the neurologist the neurologist is pulling me is that some
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yeah yeah actually this is uh an important point so what you're describing is the
The Food Test
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so-called food test uh it is a test that was invented many years ago and uh that
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our own line actually very nice historical videos of David Marsden the founders of this field when he explains
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how to do a proper pull test we'll test us to be strong enough because we want to perturbate the person a center of
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mass so we want the body to be pushed enough so that we can see the reaction of the body to avoid a fall
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um there's a reason why this is done pulling backwards um and this is actually related to one
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of the questions I have seen in the chat box the natural tendency of balance problems in Parkinson's disease is
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retropulsion so people tend to go backwards uh we we have issues
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especially in the anterior posterior axis so we tend to fall forward or backwards in this disease not so much in
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the laterality access and this is why people with Parkinson's can actually ride a
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bicycle because to ride a bicycle you need to be challenged on this type of laterality so you know this is the what
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we call the medial lateral access and that's why they can do it instead it's more difficult to keep the balance
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in the anterior posterior axis that's why we do the full test so this is just to say and that's
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something else that will discuss discuss I'm sure later today that there's also a lot of compensation that the body puts
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in place uh I want to just give you two examples when it comes to balance the the fact that some people lean forward
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this is something called yeah it's a something that can happen in Parkinson's
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to some researchers this is actually a mechanism of protection because if you're leaning forward the chance to go
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backwards uh is reduced and we see this often after physiotherapy because some
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people have a better posture yet they start holding more backwards because their posture has improved and the other
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example of compensation that I can think of is the Cadence Cadence indicates how
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many steps we can do per minute and I mentioned already the step length is
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produced uh but the number of steps per minute is not reduced actually it can be
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modulated so people can actually use that to compensate that's why in order to keep a certain speed people tend to
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have more steps with a short step length that's compensation that's good but
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sometimes this leads to a vicious circle where these steps become shorter and shorter and faster and faster as the
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walking progresses and that's no good so that's a bad compensation but I'll pause here because I know I throw a lot of
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stuff in in this answer and we'll need to address one by one uh these these different aspects as we go forward
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no this is great uh and not I wonder if you want to share with us a little bit how the
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evolution of how of gate impairment over time sort of with with the progression of the disease
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uh sure so hi everyone I'm anat um so first of all um as you mentioned
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and as Alfonso mentioned uh and in Parkinson everything is gradual so it
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starts off very minor and just accumulates over time and we need to remember that gay disorders are not
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similar throughout the disease but they're not similar also between individuals they vary quite extensively
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and that has to do also with you know how a person uh what if he was mobile
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very mobile age also affects it so there's many many
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um additional aspects to gain disorders and Parkinson's disease that are not just the disease but in general when
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we're talking about early stages of the disease we will find you know an asymmetrical Behavior so something that
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is very uh we can see the short steps that were discussed here more on one side the arm swing in one side and then
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once the disease progresses we will see a more symmetrical behavior that also
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affects rotation of the trunk so this rotation of the trunk trunk will create
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even a more shorter and slower kind of uh walking movement and with the
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progression of the disease we will see additional issues that come off from the biomechanics of that impaired walking
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and these relate to freezing of gait for example the inability to actually move
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or the feeling that the feet are glued to the ground and also in addition we
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will see Falls and this relates to the balance issues that were mentioned here by Alfonso but also to the real
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challenge of the body of the biomechanics with the short steps and the inability to actually
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correct movement changes or or imbalances along the way
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it I think you know we need to also mention that it might not be the case
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for everyone not everything will appear for everyone and it's really important to listen to your own body and really
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describe to your physician what is bothersome to you uh in order to
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actually Define you know the treatment approach that is personalized and really
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will treat the the problems that you have so the aim is to provide at the end
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personalized therapy that's great I I and I wonder you know
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jumping in with a question from the audience and maybe Terry this is something you could uh field
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um they're asking can weight training be something that improves balance how would that affect yeah yeah I can
Weight Training
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answer that well thank you for having me it's a pleasure to be here and you know in general there have been strength
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training or resistance training studies that have shown uh that have led to
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improvements in balance in people with Parkinson's disease it's one aspect of
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um of a treatment plan that can help with balance there are other aspects but
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the weight training can help with the sort of what Alfonso was saying earlier you know people
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um you know with Parkinson's have difficulty turning on their muscles sort of fast enough and with enough uh Force
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to take a big step for example and uh to prevent the fall now you know
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uh these weight training exercises aren't gonna absolutely prevent falling but
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they can help improve a response to a perturbation and help to reduce uh the
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frequency of falling so it's one aspect of a you know an
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exercise program that can help with balance well that's a really nice transition to
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our next slide which is to talk more about Falls um and Terry I wonder if you could share
Guidelines for Assessing Fall Risk
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the guidelines for assessing fall risk and kind of um how you do a home safety evaluation
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yeah so um we I can talk about a couple things I think one reason uh one benefit
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of people seeing a physical therapist when they have walking and balance
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problems is that a physical therapist can spend a whole session you know a
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whole sort of 45 minutes to an hour session really sort of going in more depth with trying to figure out what's
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wrong with the balance and or or walking for this particular individual because
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like anat was saying earlier there's lots of variability uh in what can go wrong with balance and walking among
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people with Parkinson's disease so a physical therapist will administer a lot of standardized tests you know that can
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be done for example in Balance standardized tests that look different aspects of balance
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so some people um might have more trouble with balance when they're reaching down to the floor
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or reaching up overhead versus for example being perturbed or nudged or
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some some quick movement that leads to a fall and so by administering standardized
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tests the physical therapist can help identify what aspects of balance are
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particularly problematic for this person and that helps the physical therapist
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then um you know create an exercise program that's going to be tailored to those
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aspects of balance and the similar thing with walking you know we do all kinds of walking measures
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we mean we measure walking distance and walking speed and we look at the quality
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of walking sometimes we might even ask people to wear some sensors on their body and wear
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them at home for a week and come back in the next week so that we can take the data from the sensors to understand
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how much walking did did somebody do or at what intensity and then even looking
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at some aspects of the quality of walking and from all that data using that data
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then we can you know sort of create this individualized exercise program with the
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goal of improving walking outcomes and particular aspects of balance that
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hopefully lead to a reduction in fall risk in in terms of assessing
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um people's homes I mean people who are spending a lot of time at home and you
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know most of their Falls happen in home then it might be a great idea to have a
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physical therapist or an occupational therapist come in the home and do a Falls risk assessment
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and that has a lot to do with identifying certain uh environmental
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barriers or environmental triggers in the home that might increase risk of falling or it can be examining
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strategies that people are using when they move in the kitchen or the bathroom for example and there might be some
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different strategies that people can employ to reduce their risk of falling
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does that help to answer your question for sure for sure
Freezing of Gait
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since we're talking about balance um and gate and I think um moving forward and
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I've made an example of how actually false risk has to do not just with balance but also we we gate I think we
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should take a step back and describe a bit more the two major type of problem
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with walking than people with Parkinson's might have we have actually a slide where you can see that yeah in
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general there is bradykinesia and hypokinesia which is classic and it's one of the early signs I mentioned
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before bradykinesia means moving slowly it comes from Greek hypokinesia means
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moving uh in small steps in this regard so it's the amplitude of the motion and
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that's something that we see something that has to do a lot with our dopaminergic cells in the brain and
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therefore it can improve with specific treatments for example levodopa but
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what's really important to discuss a bit more is freezing of gates and actually an ad is an expert of freezing of gate
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and she can probably give us an overview of the different types of freezing and what triggers it so as let's start with
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the description actually what freezing of gate really is that would be great or not if you could do that
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sure so from a clinical perspective um really what a patient will describe
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to us is that he feels that the feet are really glued to the ground so the inability to actually take the step and
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this can be an inability in which there is no there is total non-movement so
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akinesia what we call akinesia or even a trembling in place a feeling that you
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know they're trying to move the leg but they're not able to and this is actually a very very interesting phenomenon and
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people have been studying it for quite a while but I think there's a lot of questions and a lot of explanations that
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we still don't know but currently there are several theories that um
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that suggest for example that there might be triggers or there might be connections um between neural networks
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that actually are involved in this situation so if we're talking if Alfonso was sharing the issue with automaticity
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or problems with uh basal ganglia that create or the neurodegenerative process
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that create this problem in automaticity then uh one example one theory that
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relates to freezing of gait is called the cognitive theory in which it suggests that because of the lack of
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automaticity people use different compensations or different and networks
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to actually compensate for this lack of automaticity meaning you know thinking being more aware of walking for example
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and when these fail we see a phrase we see a problem with uh with gate so this
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is one example for a theory another one is for example the stress or in anxiety
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Theory which can explain why people tend to freeze in in you know in narrow
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passages or narrow hallways or we're going through a door or uh when they're
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trying to reach uh their phone when it's ringing and so forth so when there is a trigger that relates to either time or
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space this might be related to the anxiety Theory
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there's also theories that relate to visual spatial processing and other
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connections might explain it but what we see in general is that there are several
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different types or subtypes of freezing of gay we see people who freeze when
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they're off medication and people who freeze when they're on medication these are two examples of subtypes and these
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actually are really important distinguishes because if this is a person who is freezing off medication
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potentially you know by um providing
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um timely and and after a dose for uh of
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therapy then we can avoid this free of gait issue um when freezing of gate is done it
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happens in on medication then maybe the the
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um underlying mechanism is a bit different and it's not doctrineergic and we need to think what exactly triggers
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it and maybe provide a non-pharmacological treatment that can
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be for example cueing and we know that queuing might be very helpful when we're
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talking about cueing that can be something that can be a strategy such as visual appealing by providing for
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example lines on the floor uh when walking or an auditory queue like a
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metronome giving some external feedback or external cueing for walking and you
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know uh taking a bigger step in any case similar to what we said earlier about uh
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walking here too it's very personalized so we think that you know in the
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beginning freezing might be very distinct for each person and the triggers are very distinct for each
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person and when the disease progresses it might be a mixture of things but
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initially it might be uh very distinct for each person and it's a good a good thing to maybe look at the triggers and
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look at exactly when this happens um in what environment this happens and
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what is the situation that it occurs in wow that's such a great description and
Difference between Freezing and Fascination
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so important to have it be personalized is what I'm hearing you know and I
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wonder there was a question from the audience about the difference between freezing
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um as we've been talking about and fenestration Alfonso could you test the nation yeah
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it's a Face the Nation frustration is it's more I would say
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they're both dangerous uh fenestration and Physicians but we're talking about Fascination now
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and it's a oh sure term and I realize that anytime I have this type of
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webinars or I speak to people with the disease uh it's a common question so
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just to make it simple they belong to the same disorder and that's why we
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often talk about it uh at the same time freezing is basically when you when you
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feed are frozen and it's in a way a natural reaction that the body has think about when you
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have uh all of a sudden you find that I know an anonymous in front of you and you and you you pose is free and you
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freeze that's actually a natural function that we have unfortunately in practice this is this happens all of a
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sudden that's why often causes false um while there's ongoing walking or turning or passing your ways so it's a
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motor block that's why the way we call it so no movement in Fascination comes
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from the same pathological process most likely in the brain but there is no motor block it's quite the opposite so
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people keep on walking faster and faster and faster often leaning forward and
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this increase of the Cadence that I mentioned before happens short steps always you know shorter and shorter fast
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paced gate but no motor blocks and that's why this can be quite dangerous
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because it feels like they cannot stop themselves and often the only way they have to stop themselves is either
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holding on to something landing on the wall or unfortunately sometimes even landing on the floor so sometimes the
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patient actually falls on purpose to stop disproportion so Fascination is the
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same process of freezing of gate this constant stepping without the motor block instead in freezing off often we
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see constant stepping and then the patient the person with parking that stops which is lacking in Fascination so
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these are different Fascination is rarer than freezing but it's still very important to this to be discussed and
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quite disabling and to some extent the approach is similar uh in terms of treatment I also notice in the chat box
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a question about doorway and this is something that are not already mentioned uh just a curiosity in case people
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wonder we now know which ones are the risk factors for this doorway problem it
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turns out that people with the disease more more prominent on the left side of the body tend to have this problem more
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often and this is because this means that most of the pathologies is on the right brain and the right brain is the
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part of the brain in charge of visual navigation so the problem here is with uh interpreting what's happening and the
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visual flow as we go towards a doorway in this case and lastly uh in case
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people wonder we often don't see these things in the clinic we rely on what
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people say Fascination is a typical example but also the way freezing to some extent and often
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um people with freezing of gauge or Fascination don't have the problem in clinic and I often see uh the spouse or
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the or the or the person with the problem uh almost complaining no you're pretending to have this problem then
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because when you come to see the doctor you don't have this issue and actually that's the way it works the brain in
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certain circumstances under the stress Department in wide open space with a lot of light no furniture works better
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that's why we don't see freezing in the clinic it doesn't mean that it's not a real problem and that's why we need to
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educate people like we're doing today because we rely on the description you give us of what happens at home
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it's like when I take my car to the mechanic and like and the clunk stuff sorry but
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I know exactly the same analogy I use yeah no I mean my daughter gets so frustrated
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with me because I'll be walking with her and I'll be this I cannot say the word
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um I'll start going so fast he's like come on stop stop but I can't I can't make myself stop I'm just kind of
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shuffling along like pretty quickly it's uh yeah
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this is something you see often in DBS actually most of the fascination cases I
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see is in DBS patients and my interpretation is that DBS is good at treating the motor blocks or freezing
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okay it improves but sometimes it's not just there to improve everything so you see a little bit of the problem in in in
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the form of destination
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each of you has recommendations for Footwear um it's come up in the audience and I would love to know as well kind of what
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you recommend or not recommend um along with you know assistive devices like Keynes Etc
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hmm yeah I can talk a little bit about that
Footwear
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Footwear is a little tricky um you know some people say well you want
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to have something that um uh provides good support and you know uh
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has a lot of friction and and is stable but which can be good for some people
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but in some people that can also the thick rubber can also be sticky
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and be difficult to move your leg forward and for some others of kind of a more a
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smooth surface um you know can be helpful in trying to sort of take a bigger step yet you don't
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want it to be so smooth that it's slippery so it's very again we have to be sort of
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individualize it depending on the type of gait problem that a person is presenting with it's not sort of a
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one-size-fits-all recommendation and then there was a second part to your
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question there was the shoes and assistive devices like canes
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yeah we get that a lot that's a very very common question and um
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you know I it it again it is individualized to the person but they're
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they tend not to be very helpful in people with Parkinson's disease
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um you know uh for example people with Parkinson's lose
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automaticity of movement right and then they're thinking about movement so adding another aspect of movement to the
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to the you know to the situation not only do you have to move your body forward but now you have to move some
29:02
sort of cane or Walker forward uh that can be difficult for some people that are really falling
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and really need some sort of assistance in the sort of this tends to be in the more later stages
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you know sometimes a walker can be helpful but the kind on Wheels could be
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more helpful for some because it's you don't have to pick it up and move it and think about it so much yet you know
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certainly if you're fascinating you don't want to walk her on Wheels you know so it's very again you know it has
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to be very individualized to the person's presentation and that you know
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I would really recommend people go see a physical therapist and with that question hey you know should I be using
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a cane or a walker would that help me or would you know or hinder and uh it's it's an important question that requires
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a thorough evaluation what I wouldn't recommend is what I see is people go in the pharmacy and buy one and start using
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it and that's just not a good idea um so you know Consulting with an expert
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to really get a thorough evaluation is the way to go what would you say about walking polls a
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lot of questions have come up about those yeah I mean uh again for some people and
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for some people that can be used as a form of exercise you know helping to exercise helping to
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walk faster um you know to to move the arms to get the heart rate up uh but again it really
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needs to be individualized to the person not not a one Parkinson's if we can say
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anything it's definitely not a one-size-fits-all uh recommendations
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so individualizing that's really good advice uh I wonder um so I know for myself it was really
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helpful for me listening to Alan Alda who is a big I'm a big fan of when he
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talked about marching and thinking about marching to music that was that's been really helpful to me can you can you say
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more about how that works and and kind of as a as a tip and
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foreign yeah I can talk a little bit about does somebody else want to jump in or
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um just to say that it's a form of you know we just talked about cueing as a
Cueing
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form of uh treatment for freezing of gait so basically uh if we we think
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about music or cueing they bypass the the problem by providing something
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external that can give you a rhythm instead of the Rhythm that is not working from internal sources so this is
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uh this is why you know it kind of uh initiates the movement better and it allows you to follow that Rhythm and
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follow that um kind of pace uh and gives people a lot more Mobility uh in a sense
Cueing and Music
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and it's been used also as a as an assisted device uh in a sense by using
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it in the home or in areas that are difficult for for the person
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um and Terry you can talk about um treatment with cueing
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and music yeah there's all kinds of different ways cues can be used or strategies or cues
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can be used and it depends what the problem is you know if the problem is gait initiation or starting walking then
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something like marching can be a good way to help with that with initiating walking
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if the problem is you know gradual slowing of walking and taking smaller
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steps as the walking continues then things like using a metronome or music
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some sort of external stimulus where the person can entrain or lock on to that
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external beat that can be very helpful with something like a more long distance
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continuous walking over time it helps keep the steps more regular a little
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bigger um you know those types of things you know we talked about those sort of lines
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on the floor sometimes a line on a on a threshold through the doorway can help
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provide a cue to step over that threshold lines through a doorway as a strategy to
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help people uh walk through a doorway I find that when people look look you know
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sort of look across the lines through the doorway so the attention is actually
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focused through the doorway rather than on the doorway the the cues can help
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that Focus um so there's lots of different cues and
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strategies that people with Parkinson's can use I've learned many from people with Parkinson's living with Parkinson's
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have taught me lots of cues and uh you know and and so it's a it's a sharing of
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information and and trial and error to figure out okay what works best for you
34:06
in this situation actually Robert in the chat is actually
34:12
saying that uh he has freezing and he finds that the only thing that actually works for him is crutches so we learn
34:20
from patients what works best and there's so many strategies
34:26
for sharing Robert yeah uh just like a a note
34:31
um a word of quotient about this because it's true every person has different strategies but as you heard already it's
34:39
difficult to generalize um give you an example I met once a man who happened to turn just jumping so he
34:46
figured that jumping was better for him to turn but that was his personal compensation strategy he was working for
34:54
him it didn't cause any fall but from that to going around saying oh if you have problems with turning just jump you
35:01
know it's a big it's a big gap right and you don't want to do that so for the same reason any compensation strategies
35:07
that you can hear about that you can hear about uh even today don't assume that necessarily you gotta do that
35:12
because he can actually be causing false and it can be actually a dual task some
35:18
people instead of being helped by these devices are as you heard already are distracted by these devices and and
35:24
therefore their automaticity is even more impaired uh because they need to deal also with I don't know the pole the
35:32
nor they pull everybody has their own and it's not easy to jump from one person to another with respect to
35:38
strategies but that's also the beauty of our brain our brain has incredible ways to figure out things out and
35:45
um with bus bloom once we we we saw a patient that touches the temple and with
35:52
that strategy you can move obviously it doesn't work all the time but that was actually an interesting observation that
35:58
led to a publication uh with the title of superficial brain stimulation to overcome freezing of gate which was kind
36:05
of clever way to describe the the strategy so I guess the take home here is your
36:10
mileage may vary and be creative and you know kind of test them out um yeah
36:16
um these are great these are great important principles um I wonder about you know thinking
36:21
about kind of wearables and and devices all those kinds of things
36:26
um what what are your recommendations lots of talk in the chat about in the Q a about that
36:35
Clary do you want to start yeah you know a lot of people come to us wearing fitbits and apple watches and all
Monitoring
36:43
different kinds of things and you know in in general those can be really helpful in encouraging people to be more
36:50
active you know monitoring uh how active you are and how many steps you're taking a day can be helpful in motivating
36:57
people to do more um you know it it's it it really depends
37:02
on people's gait patterns how accurate these are uh because sometimes you know
37:08
if you're if your gate is really slow or very shuffling then it's not clear
37:15
whether these devices can actually measure a step accurately you know so
37:21
normally when we take a big step and we land on our heel and it's very rhythmic these devices are pretty good at
37:27
identifying steps and Counting them but for some people you know a really slow
37:33
pattern or a really shuffling pattern or certainly freezing of gait this is they're probably not as accurate
37:40
um you know it so it it again it it really depends I mean to some degree you
37:46
can check this and count your steps and count and see what the device is picking up and and and and and and determine
37:53
whether that is um you know whether it's working for you um you know and a physical therapist can
38:00
help uh you know help with that as well when we measure gait and and people with
38:05
Parkinson's in research for example we use uh research grade monitors or
38:11
different monitors that have been validated and are usually more accurate in in measuring different aspects of
38:19
walking but these commercially available devices again for someone early on that has really mild gait uh problems they're
38:27
probably pretty good but with more you know moderate to severe gait
38:32
disturbances they may not be as accurate
38:37
okay um so so knowing so the devices may not work as well I know I would trick my
38:44
device sometimes by just shaking my arm and having records and steps
38:50
yeah that's another great point is it can measure you know if you wear it on the wrist it can pick up things like
38:56
Tremor and you know and it's dyskinesia can also uh you know lead to erroneous
39:03
counting of steps so there are other factors um that can be counted as steps that of
39:10
course aren't steps a nod or Alfonso anything you wanted to
Wearables
39:16
add on the wearables uh not necessarily and that is an expert
39:21
I just want to say that uh wearables are measuring some motion so
39:28
I I always see too much hype around variables they can be useful but it depends how you use them and what you
39:34
wanna them what question you want them to answer uh if you're talking about something called gamification so you're
39:41
actually playing and and actually using these wearables to keep track of your Mobility to motivate you to do more
39:47
that's a useful way to use them but often They Don't Really uh add much in
39:52
my experience but and that does research on this so she might have addicted no but I I agree with this comment in
40:00
essence you know it depends on what what the question is and in research we're looking for specific things to better
40:06
understand the mechanism to better understand the variance between people and maybe to predict things like who
40:13
will fall who will develop freezing of gate in the future but when using you
40:18
know commercially available devices in the home um I mean I I would regard them as
40:24
something that is motivational so for a behavioral aspect you know how much I'm moving looking at you know giving me
40:32
some incentive to potentially do more uh get out of the house and be
40:39
more mobile but I wouldn't take this as a you know uh to um too accurate or or really depend on
40:47
it and as a Alfonso said there are also wearables that are used at um for
40:54
um therapy or for cueing or for um you know uh giving some uh some uh
41:00
Mobility enhancers but um again this needs to be evaluated for
41:06
each person and as we said before really therapy should be consulted with a therapist before using these devices
41:12
alone excellent point so there are a lot of
41:17
questions coming up about DBS I know for my myself DBS has been hugely helpful
41:23
and I feel really lucky about that but in terms of gate I I have developed more
41:29
kind of of a shuffle or fenestration I think that's how you say it but I but that word is gonna plague me but I
41:35
wonder if um we could address the DBS question a little bit more I just have a question Becca did you
41:43
have freezing of gate before your DBS no and I still don't
41:49
okay um well I I can probably take this one because I spent most of my day uh and I
41:56
spent most of my life at this point uh talking about deep breath stimulation and using the breast stimulation to help people
42:02
um I also seen in the chat that some people were wondering what DBS is simply put is a brain taste maker or it
42:10
consists in usually two electrodes one per side inserted in certain strategic parts of the brain connected with wives
42:17
that run under the skin attached to a battery pack a real pacemaker that is usually under the collar bone so that's
42:23
a stimulation of certain parts of the brain and it works but and that's the most important message probably about
42:29
this it works in well-selected people it's not something that you will do and
42:35
you will have the same answer or the same effect across the board no it depends on the person uh it also depends
42:41
on the target there are two major targets in the brain subtalamic
42:47
stimulation so stimulation of a Target called subtle promise or Globus politics
42:53
stimulation so stimulation of another nucleus called Globus pollidus the first one is usually the strongest but it's
43:00
also the ones that can cause more problems if done not in the right person that's usually the one that young people
43:07
have because also allows medication reduction but guess what if you do it in
43:12
the wrong person one thing that you can easily see is speech balance and gait worsening after
43:18
brain surgery or even with the wrong stimulation parameters so this is extremely relevant to the day to today's
43:24
topic because this type of DBS can help and it can help a lot because their fat
43:30
mimics effect of levodopa but if it's done in a brain that is too frail in a patient with not the right candidate you
43:37
actually have the opposite effect this is why whatever we say today as you heard already has to be discussed with
43:43
your own care provider um the other Target Globus politics is safer safer with respect to gate and
43:50
balance it's probably less effective on slowness this is why medications are usually not reduced but that's the
43:57
target we choose in Toronto for example when we deal with uh people who are a bit more frail or they have already
44:03
freezing of gate to begin with uh so any any short it works because
44:08
it's a constant effect on the brain it doesn't make any sense to do DBS early
44:14
in the disease It's very effective for motor fluctuations when the symptoms go
44:20
up and down and or for dyskinesias so anytime your disease needs something
44:26
that is constant this is where you need the brain stimulation the only exception to this will probably be Tremor because
44:33
Tremor responds better to deep brain stimulation than medication so some people go for deep breath stimulation
44:39
even when they don't have fluctuations or dyskinesias but simply because they have a Tremor but everything has a price
44:47
so if no well selected you may end up with problems and that's why you need to
44:52
rely on what your care provider tells you foreign
44:59
so in in terms of the effect of DBS on on gate then if for a well-chosen
Levodopa Challenge
45:06
candidate what what do you think that's why we do levodopa challenge
45:12
um challenges uh sometimes people ask me uh okay why do we need to do this meaning that they come to the hospital
45:19
without medication taken without libidopa so that we can see how they do without medications then we give the
45:25
medication and we see how much is the response to medication as a rule of thumb whatever problem improves with
45:32
libidopa it will improve with DBS so that's the that's why we do deliverable challenge so if someone has a freezing
45:40
of gate that doesn't respond uh to medication DBS has very little role it
45:47
can still help many other things Tremor stiffness but it won't help freezing so sometimes we do the little bit of a
45:53
challenge also to tell the patient and the family what to expect from this
45:58
procedure because a big problem with DBS is expectation very often people are disappointed after the procedure if
46:04
these expectations are not set clear from the very beginning and leave it up a challenge helps uh in this case in
46:11
particular we particularly speaking as for freezing uh to some extent also balance even though that's more
46:17
difficult to predict we tend not to do too much DBS in people with a profound balance problem because DBS really helps
46:28
so I wonder I wonder what
Tips for managing balance issues
46:33
tips or search on um helping with freezing or balance issues
46:39
Terry what would you say just two two points uh uh actually three
46:47
points very quickly first the sometimes medications don't help make things worse uh and keep that in mind because uh you
46:55
go see your neurologist oh freezing is still a problem the neurologist the natural tendency or on any every doctor
47:01
including myself would be to give you higher Doses and that creates a vicious circle where things get worse and worse
47:07
and worse libidopa in rare cases can make freezing worse for example uh the
47:12
second the second thing is blood pressure a big issue is low blood
47:18
pressure especially when you stand up quickly you may feel a little dizzy or even without feeling it right away the
47:24
blood pressure can drop can drop over time and that's an unrecognized cause for balance problems and Falls so always
47:31
measure blood pressure not just lying down or sitting but also standing and
47:36
finally there was a comment about wheelchair in the chat and I think it's an important point to address uh we are
47:42
not opposed to wheelchair uh but they're not always needed thankfully especially
47:48
we we want people to try to uh move as much as they can to keep active sometimes wheelchair is needed for
47:56
safety reason um there's no need to be uh worried about the steam or a wheelchair problems
48:03
sometimes because wheelchair can be used also doing strategic moments of the day for example you use the wheelchair to go
48:09
from a uh at the airport just for that long uh usually walk that there is at
48:15
the airport you are in a wheelchair and then you forget about the wheelchair you don't use it anymore when you're on the plane when you're in the in the lounge
48:22
or whatever because you don't need to walk for so long so it's also a wise way to use a wheelchair it's not it's
48:27
something useful we don't always recommend to go there necessarily but it
48:34
can be safe for for a full perspective I think that's so important I love that
48:40
you said um you know not to disregard the stigma of it because I I mean I think that's
Toe curling and dystonia
48:46
really about it's really about you know keeping your quality of life and doing what you need to do to you know be able
48:52
to keep on doing things like travel and airports and you know saving your energy in that kind of way is so great
49:00
um I wonder if there are any other tips or tricks or um particularly oh I guess one one other
49:07
question that was coming up in the chat was about toe curling and kind of um but how and I guess that's you know
49:13
dystonia and um affecting your feet and how that can affect gate as well
49:25
no no I think uh dystonia is something maybe Alfonso can talk about
49:31
um it is uh yeah very quickly there are
49:37
many more things we discuss yeah so dystonia can respond to libidopa
49:42
but another easy way to treat the stone is bottle anal toxin injection in under
49:48
your foot or in other muscles or the or the leg and that can help the curling and that can in turn also help Escape
49:56
actually
50:03
great well let's um we're going to take a quick uh chance to talk about the ppmi
50:10
um just as a brief aside to let um folks know about the progressive Parkinson's
50:16
Progressive marketers initiative by the um Michael J fox foundation so
50:22
um they're currently recruiting folks to be a part of the study um so you can visit that website and
50:30
um and sign up so you can sign up yourself those without Parkinson's can
50:37
also sign up there's a free smell test that you can order so check that out
50:42
please because this is one of the ways that we can involve more people in research and spread awareness about
How to improve balance
50:48
Parkinson's so I think um you know we the time has just flown
50:53
by but I think we want to um just see if there are any helpful tips and tricks and other
51:00
recommendations that the pen our panelists would have for the audience
51:06
I see there's a couple questions on on how to improve balance and you know I think
51:14
I think there's a few things we we it's really important to take a history from the from the person that's experiencing
51:21
balance problems to identify the circumstances under which they lose their balance that there might be
51:27
falling so that's really important and then we do a standardized assessment to
51:33
determine again under what conditions people fall or lose their balance and
51:38
because that will then tailor the treatment but in general challenging balance is what's important to do and
51:46
there's lots of ways to do that it can be done by uh participating in things like Tai
51:53
Chi for example and their dance has been shown to improve improve balance there
52:00
are certain balance exercises that can be done and so it's not that one
52:06
specific thing needs to be done or one type of exercise it's just that in
52:12
general balance needs to be challenged so it needs to be
52:18
um you know the dosing has to be enough and it has to be you know can done
52:23
continuously over time not you know not uh you know just a few days or a few
52:30
weeks and that's it you know it has to be done over the long term so again what that does what that means
52:36
is that there's a lot of choice and people have you know can choose something that they like or they're willing you know that they are willing
52:44
to do and adhere to over time but it's nice also to to get a full evaluation so that you can sort of
52:50
tailor that specific intervention to the particular types of balance problems
52:55
that you're experiencing great I wonder um I want to give another
53:02
tip um for the audience we've been saying all along through this out throughout this
53:09
webinar that it's personalized and we need to keep in mind you know the the person but there is one tip I think that
53:15
is uh can be generalized to everybody especially [Music]
53:21
um to those who are recently diagnosed and it is uh that if we
53:26
you know start practicing or start um um doing exercise early and if you
53:34
maintain a good health and a good Mobility with your body you might be able to sustain it for a longer period
53:42
of time this is important because we know from research that early intervention now can have an effect on
53:50
the disease progression and potentially we we can delay you know any
53:55
complications and it goes also for Falls you know one of the things that people
54:01
often ask is how do I um treat Falls well the best way to treat Falls is to avoid them and
54:07
avoiding them by uh you know creating a better Mobility capacity and sustaining
54:14
the best balance that you have and this needs to be started early as as Terry has said and each one of the view of us
54:22
of everybody I need to find the thing that he loves to do that he can be
54:27
um can maintain exercising for a long period of time doesn't have to be the
54:32
same all the time it can be different and you can change throughout the course of the disease and throughout you know
54:39
your life uh but it it needs to be consistent we you have to exercise you
54:46
have to be mobile at all times
54:51
start early before you even have the problem exactly that's key no matter what the
54:57
problem is yeah this is what I tell myself every morning when I get up
55:04
I was postpone it
55:10
no questions about this pain from toe curling I wonder if we just have a couple minutes left but I wonder Alfonso
55:16
if you wanted to address that really quick oh the curling is uh dystonia usually
55:22
it's uh it responds well to shots about around toxin or medications and all this
55:29
tonic and also affect the calf and also be painful especially in the middle of the night there are ways to minimize
55:36
this with drugs and again bottoman toxin can be used um yeah no more than that I I think we
55:42
should use this uh next few minutes to discuss the other tips I've seen questions about music therapy that
55:48
probably Terry and Annette can can comment on there's so many things and let me just say once again that the most
55:55
important thing is exercising really is it goes beyond DBS could be on medication is the real medication
56:02
yeah will save your brain um I think maybe Terry you can uh
56:09
mention when to um when to go to a physical therapist want to start you know
56:16
right I think it's really important uh to establish your your team
56:23
you know your whole team your your neurologist your therapist your physical therapist your speech language
56:28
pathologist you know I I think uh so we recommend people go see a physical
56:34
therapist at as soon as they're diagnosed you want to be you want an exercise program that you know what the
56:42
focus is on prevention you know and and um and and you know getting started
56:48
early making the lifestyle changes necessary to integrate exercise into your life particularly at the beginning
56:55
when it's easiest and when you're most mobile and most able to uh you know to
57:00
benefit from from an exercise program and then we recommend just like you go back to see a neurologist every six
57:08
months or or whatever for a medication adjustment it's important to go back to
57:13
see a physical therapist every six months or annually to get an exercise adjustment you can't just do one
57:20
exercise program for life it has to be adjusted and tailored depending on how
57:25
the disease is changing and how you're changing and what your goals are so we
57:31
recommend regular follow-up visits for that reason
57:37
that's such a great point and and just adjusting it to you know how your
57:42
disease is progressing how things are changing for you and you know things changing in your life I know for me that
57:49
um you know I go back and forth between being really good about exercise and then dropping off for a while and then I
57:55
need to kind of re-motivate and come up with something new and you know go out
58:01
with a friend or you know all the different different things that I can do to get myself to continue to exercise I
58:08
just want to say thank you so much to each of you for all your wisdom and
58:14
knowledge and and contributions to the Parkinson's Community um and with the research and work that
58:21
you do really just so important I mean there's so many questions in the chat I wish we could have another hour but I
58:27
know we have to wrap up in in just a minute here and so I just want to say thank you and any any last comment that
58:35
you each want to make just thank you it's been a pleasure and
58:41
education is really key it's important that Michael J fox Foundation is giving us this opportunity
58:49
I agree this is an important topic and I'm glad we had the chance to discuss it amongst ourselves I think um you know
58:56
something that doesn't get as much attention as some of the other aspects of of Parkinson's and and this is a
59:03
really important topic great absolutely and thank you Becca
59:08
thank you for moderating and again start early exercise
59:17
I think thank you everybody thank you
59:22
hi
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