Understanding Off Episodes and Dyskinesia in Parkinson’s Disease

for the nearly 1 million people in the United States living with Parkinson's disease dopamine replacement medications can offer valuable relief from symptoms however extended use can come with a series of challenges today we're going to take an in-depth look at the disease and we'll meet an inspirational woman who comes out swinging at Parkinson's I'm Beth Troutman Access Health starts right now thank you foreign Parkinson's is a progressive neurologic disease that affects the ability to control movement in persons with Parkinson's specific areas of the brain undergo a rapid cell death leading to the depletion of an important chemical messenger called dopamine Parkinson's disease as a condition represents the brain not having something it needs the neurotransmitter dopamine is not being produced to the levels that it should be and when dopamine is low symptoms come out Parkinson's disease is a very patient-specific condition they present differently they have a different progression over time and they have a different set of symptoms the Cardinal motor symptoms of Parkinson's disease the things that people really think about when you think Parkinson's involve bradykinesia or a slowness of movement overall Tremor that happens in most people but not everybody as well as rigidity tightness of muscles and walking and gait instability now those tend to be the symptoms people think about but it's not the total list of symptoms because if you pick a system of the body and you imagine slowing it down it can have a symptom that's related to Parkinson's according to the statistics most people diagnosed with Parkinson's disease are aged 60 years or older however an estimated five to ten percent of people with the disease are diagnosed before the age of 50. Anna was diagnosed with Parkinson's disease at 38. so I had this light Tremor in my left pinky that directed me to go to my doctor and before I knew it like three months later I was diagnosed with Parkinson's and I I just didn't even know what to think I mean I was blown away we were both shaken by the diagnosis certainly all not understanding a lot about the disease I I distinctly remember you know just laying in bed at night you know she'd be asleep and me staring at the ceiling you know and it was a huge period of uncertainty I tend to not not a very positive person I allowed myself that day or so of being you know sad and mourning what I had just heard I got treated medically for it right away but I didn't want to deal with it I didn't want to I didn't want to talk about it I didn't tell anyone at my job I was the youngest and only female on my leadership team and I did not want to have another box put around me to that might you know limit my ability to achieve based on my my actual abilities not my disability so I kept it quiet for a long time and when you keep it quiet at work it requires you to keep it quiet out of work when you start that isolation of not telling and having that secret it's very hard to break because there's never a good time to tell people about it so I think those of us especially those of us that don't want to be pitied or provided sympathy we tend to We tend to hide it and I hit it for probably 10 years coming up how Anna is fighting her Parkinson's disease symptoms [Music] enormous progress has been made in the treatment and understanding of Parkinson's disease over the last 50 years providing Physicians with a vast array of therapeutic options to address the unpredictability of the disease [Music] thanks for coming over would you like a piece absolutely you can never turn down cake awesome no never so what are you up to now are you still working well you know I did work for full-time for 10 years post-diagnosis 10 years is a long time so you must have been managing your symptoms with medication yes yes in the beginning it was pretty easy you know the first five years in I was managed my symptoms extremely well for me I knew it was time to start making a transition into going you know retiring from that world when my symptoms started impacting my ability to support my team being frozen in in place outside an elevator while the rest of your team is inside waiting for you to enter is quite frightening and stressful as you might imagine so I knew it was time to make a change that'd be an incredibly difficult so what do you do with all of that energy all of the things that you loved about your job where do you put yeah all of that mental energy and all of that passion it's a great question um because you know I think that with Parkinson's one of the major points of success is that you have to continue to have a purpose and my purpose was gone uh those of us that have young onset it's very different for us you know we're not retired we're in the Crux of our careers we're having kids and it's really hard I decided to start the young onset Parkinson's Network and we're now in 48 states and 17 International countries which is unbelievable in a very short period of time but it goes to show you the the need that was there for coming together of people of like age and issues and we have a lot a lot more to do so it's been very exciting and fulfilling dopamine replacing therapy such as levodopa continues to remain the gold standard and the most effective medication for the treatment of Parkinson's disease symptoms Dr Falconer explains the vast majority of patients if not everyone with Parkinson's will be treated or are currently treated with Carbidopa levodopa it's an incredibly effective medication and so our goal of care is to give people dopamine back in a smooth consistent and predictable way so early on in Parkinson's disease most patients can take carvidopolevidopa and feel really good they can take it three times a day and for a lot of patients their symptoms are controlled and usually after about four to six years patients start to fluctuate they start to feel the medicine when it kicks in they feel it wearing off they have their symptoms return they take another pill they feel it kick in they feel it wearing off and it's those fluctuations that inconsistency of response that really holds our patients back from doing what they want to do during the day and living their best lives foreign [Music] how are things changing how have they changed I fared really well for at least the first 10 years or so with the medications working and being very effective but after that point many of us start to experience what we call off episodes what are off episodes so it's where your medication stops working as well as it did before it's kind of like feeling like I'm stuck in the mud I can't move I freeze and I have a hard time starting to walk and then when I do walk I'm very small stepped and shuffling and very uncoordinated and look very awkward and feel very awkward when this started happening did you have to have conversations with your doctor did it did you have to change medication timing of medications a little bit yeah I mean that's very important point you brought up is your relationship with your doctor it's so important to have a good one and to really find someone that can partner with you and I did I talked to my doctor quite a bit so it's very personal it is and it's very unpredictable which is the worst part did that unpredictability of it has that impacted you being a mom just your day-to-day yeah sure I mean my girls now are grown 23 and 21 so less so now but certainly as they grew up through their middle school and high school years you can't decide when you're going to go off and also stress exacerbates the symptoms so trying to get to a game on Time whether it's basketball or swimming it was really hard I've read that exercise can really make a difference absolutely in your life talk to me about what exercise means to you uh without exercise I wouldn't be near doing nearly as well as I am today wow and you know it has to be a consistent you know five to six times a week of high intensity not just like walking around the block but the important thing is do something you like because then you'll continue doing it what do you like my favorite thing is boxing okay yeah I've really really have a passion for that now I think it's the combination of the high intensity workout and the ability to punch something when I'm really frustrated sure I happen to love boxing too you do yes I do wow great so you have a trainer that you work with I do yeah in fact I'd like to introduce you to him okay all about that coming up Anna shows me the ropes [Music] people with Parkinson's disease exercise can be not only healthy but a vital component to maintaining balance mobility and daily living activities studies are also showing that PD patients who exercise may experience benefits for Anna boxing has been a lifeline I do that's incredible it's it's really a good work what's up how's it going good to see you this is Beth Beth very nice to meet you nice to meet you I'm super excited all right you ready to go yeah let's do it all right first we'll get some Chinese going uh rock city boxing is a boxing program for people with Parkinson's um it's International so there's a bunch in the United States but it's reached as far as Tokyo Norway I mean there's a there's all across the world there's Rock City boxings a typical boxers program they focus on a bunch of things balance footwork hand-eye coordination reaction time so I'm gonna switch the butt kicks right here switch the butt kicks bringing all of these different factors into one single workout which is what really makes it super super effective against Parkinson's so the first part we're doing right now obviously warming up and stretching stretching has to be so important absolutely so because stiffness is one of the huge symptoms of Parkinson's um so before every single class you got to do a little warm-up just to get the blood flowing the joints nice and loose as well so we always do a typical stretch nice that's a little bit of a that's the warm-up exactly one two three four it's important three four three four it's like Anna because this gives a lot of good visual cues for her I could really pick on her form so the weight transfers in her feet the rotation in her core especially on like the one two if we want to I can focus on the extension of the arms on her one two as well to fight that rigidity that she may have foreign [Music] my favorite workouts to do because one of the symptoms of Parkinson's is a soft voice so really it's hard for them to kind of yell and speak loud and clearly only one of you is going to be punching at a time I want her to yell out the numbers so count to ten here we go ready one two three four five six seven eight nine ten go one two three four five six seven eight nine ten I hear a high five next after this step back ah very nice good job nice that was awesome foreign [Music] so much fun yeah have your off periods impacted your workouts I don't really let them so much you know I try to fight through them when I work out but it they have impacted my life for sure especially you know time with my family the first time it was summer and the streets were really crowded the sidewalks were really narrow so I was walking in the front of the line feeling good that day I was loose I felt great I was moving well and it hit me when one of my daughters behind me said mom why are you walking so weird she said mom stop that you're embarrassing me and so that was the first time that I really noticed the impact that symptoms can have on on your family and your loved ones as well as yourself did you talk to your doctor about it I did yeah and he confirmed that that was dyskinesia that I was experiencing dyskinesia can present in many different ways you can have whole body movement you can have writhing of the chest of the arms or it can be an even smaller thing like extra movement in the face movement of the tongue or even some twitching or pulling interestingly most patients who experience dyskinesia actually don't realize they're doing it dyskinesia truly is a side effect of our therapies and it's important for people to realize that dyskinesia represents the peak of how our medicines are working it's an over stimulation of the system that results in that excessive movement coming up treatment options and management strategies to help with Parkinson's dyskinesia and off episodes [Music] while Parkinson's can pose plenty of challenges for patients not all of them come from the disease as we've been discussing today long-term use of levodopa is often Complicated by motor fluctuations and dyskinesia the real challenge to treating Parkinson's over time is that every patient's Journey with Parkinson's medication needs symptoms and progression are completely different and so it reaches a point for a lot of patients where we're kind of chasing our Tails a bit because we have this fundamental medicine that lasts for three to four hours and we're trying to fix that chemical problem all the time and so we enter this phase of just ever escalating more pills more frequently trying to fill that tank of dopamine in a better way so if you have a patient who is fluctuating periods of good periods of bad and our tool is part of the issue that's making them fluctuate then we enter this real Catch-22 of having patients take more medicine more frequently in watching this this frequency burden and this pill burden of our treatments start to overtake every aspect of their functioning in gocovery in my patients that have off episodes dyskinesia or both gocovery amantidine extended release capsules is indicated for the treatment of dyskinesia in patients with Parkinson's disease receiving levodopa-based therapy with or without concomitant dopaminergic medications as a junctive treatment to levodopa Carbidopa in patients with Parkinson's disease experiencing off episodes it is not known if gocovery is safe and effective in children how has gocovery worked for you for me it's worked really well it was very easy to start on and and add to my drug regimen because it's taken just once a day at night I personally had no side effects but everybody is different and my doctor did monitor me quite a bit in the beginning it has reduced my dyskinesia it has reduced my off time and it has increased my good on time so now I'm really able to travel again with my family with less concerns around dyskinesian off periods affecting our trip thank you so much for your willingness to share your story yeah it was fun been such a great day absolutely I agree I'm going in for a hug all right thanks so much important safety information do not take recovery if you have severe kidney problems what should I avoid while taking recovery do not stop or change the dose of recovery before talking with your doctor call your health care provider if you have symptoms of withdrawals such as fever confusion or severe muscle stiffness do not drink alcohol while taking good covery as it can increase your chances of serious side effects do not drive operate Machinery or do other dangerous activities until you know how go covery affects you if you took too much go covery call your doctor or go to the nearest hospital emergency room right away what are the possible side effects of good covering falling asleep during normal activities activities may include driving talking or eating you may fall asleep without being drowsy or warning suicidal thoughts or actions and depression tell your doctor if you have new or sudden changes in mood behaviors thoughts or feelings including thoughts about hurting yourself or ending your life hallucinations the covering can cause or worsen hallucinations 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Disorders or currently take medication to help you sleep or make you drowsy are pregnant or plan to become pregnant or are breastfeeding or plan to breastfeed recovery May harm your unborn baby and can pass into your breast milk tell your doctor about all the medicines you take include prescription and over-the-counter medicines vitamins and herbal supplements especially tell your doctor if you take medicines like sodium bicarbonate or have had or are planning to have a live flu vaccination nasal spray you can receive the flu vaccination shot but should not get a live flu vaccine while taking good covery please see full patient prescribing information at www.cavery.com for more information about gocovery visit gococovery.com and if you've missed any part of our discussion today you can visit our website accesshealth.tv [Music] [Applause] thank you [Applause] [Music] [Music] foreign [Music]

Channel: Access Health

Views: 76,448

Keywords: access health, lifetime television, nutrition, health, medical, fitness, Ereka Vetrini

Id: rX10WZiOpS4

Length: 20min 10sec (1210 seconds)

Published: Wed Oct 19 2022