Episode 5: How rigidity and dystonia affect everyday living

hello everyone and welcome to our segment i want to cut off my toe i'm your host jessica krauser and i'm here with my co-host brian baker hello i am excited for today's segment because it deals with one of my main symptoms which is dystonia in my right foot my right toes um i have had days numerous days where i would tell my husband derek that i'm like i just i seriously want to cut off my toe did you ever have that feeling i have just now started having that feeling really yes after six years i just i have it's happening in my left foot oh it is it's it's so annoying and i know i don't have it that bad there are i've met plenty of people that are in you know worse condition with the the dystonia than i am that i'm in um you know they're more progressive um although i always like to think i'm like okay if i can carry twins for 38 weeks i should be able to do you know basically anything but whatever maybe i'm a total wimp um but let's talk about dystonia do you do you know what dystonia is do you have a definition for it i don't know if i have a definition for it i mean i know what it is but i i have a definition but do you do do you you just start having dystonia or you just start getting in your toes i just started getting in my foot and toe like my my my big toe tries to bury itself underneath my foot yeah and it only happens like in the morning when i'm like getting in the shower yes and so like i had i started wearing like my son was like why are you wearing one one uh shoe or one sock on because i guess i mean there's it's gotten to the point now where sometimes it almost cripples me where i can't walk oh i thought you were going to say you were wearing shower shoes no i i have worn a croc in the shower before yes so dystonia is actually characterized as sustained repetitive muscle twisting spasms or cramps fun right so mine my toes actually just stay in like a constant bent form like so all of them bend and it actually this is this is actually one of the first symptoms i had it was my my right big toe and the two the big toe and the next toe the second one are like glued together and you can't like you know how you can like separate your fingers you could separate your toes like i would i would sit there and i'd tell derek i'm like all right watch i'm trying i'm trying i'm trying i'm like nothing separating have you tried like i have i have found like putting a rubber band like a light the rubber band around my foot helps or or i have to wear a sock and shoe all the time yeah well i definitely i wear shoes all the time which i know it's actually better if you don't if you don't always put shoes on and your feet feel like the bottom of whatever you're walking on but i definitely feel like having shoes on has helped but you know what really sucks for me is that i can't wear heels anymore do you wear heels i don't have that problem so but honestly i'm five foot two i have these beautiful amazing high heels in my closet and like they just look at me i'm only 39. i should be wearing them but instead i'm looking into very fashionable orthopedic shoes but they feel amazing um but to be honest there is actually it's a trend i can't remember the name of the brand of the shoe that my friend sent me to but they're actually really nice like sandals and shoes but they're very comfy and cozy like for orthopedics so it's a trend it's it's kind of like you know the mom jean was like nice it's now a trend like people have high genes it's kind of the same thing right i don't see jeans but anyways the dystonia the muscle twisting spasms like i said i get them in my foot you just started getting them in your foot did you get to stone do you have dystonia anywhere else i mean i had a lot of slow rigid movements but not too much as far as dystonia as far as like muscle twisting i'm just a lot of rigidity yeah i know that's where um mine and i don't even know like how much i could say the word dystonia or dyskinesia or brady kinzia which i don't remember exactly what that one is i don't know we'll have to come back to that and then rigidity i remember going into my doctor i'm like i don't know all the right terminology even though people continue to use it i try to use it i'm like all i know is my leg feels like there's a knot in it because it's stiff like this my toes are going like this and i can't stretch them out um but at the end of the day it just like started inching its way like all the way up my leg and the death grip on the steering wheel i've done that i do that all the time i don't i used to have it really bad i don't have it that bad anymore but i just find myself like gripping the steering wheel so tight oh my for no reason i was like why am i gripping the steering wheel so tight oh so that okay i actually i should have asked somebody about that because i i've noticed that in the past i don't know month or two like i'm literally driving oh yeah derek always makes fun of me because he's like why are you like ten and two like i don't know but i'll have the steering wheel and i've noticed and all of a sudden i'll like stop and i'm like why i'm like seriously tight as can be gripping that steering wheel so what is that i don't i don't know like i said i it's part of the disease like i said i i used to have it so bad i just had like the death grip of the steering wheel do you not have that anymore no i don't didn't it just one of those things that comes and goes is like this stupid disease you know what else so you said it's your left foot yes so my right foot is is what was troubling me and um i heard this from a couple people because um i think it's with the rigidity not necessarily um the stony or maybe it's everything all together but um you know when you they ask you to like lift your foot up um or tap your foot when you're in the doctor's office stuff like that um when i'm dry or when you're driving and you have your right foot down on the gas and the brake i sometimes have to bring in my left foot to help with the brake which i know is not good and i don't do it very often but i would i would start using cruise control because i couldn't i would get so much cramping going up my leg because i couldn't get my foot to like relax or i'm always i have a fear of my foot slipping off the brake and hitting the car in front of me because i can't get back on the break fast enough like that's something that is a like i i sometimes i wonder how long with stronger i'll be able to drive sometimes or maybe we should all get teslas yeah i'm waiting for it is there anybody who wants to give those away to parkinson's patients that would be sweet yeah elon hint but but in all seriousness i have heard many people talk about their driving experiences and and having the foot be an issue and that's when i switched medications that was the one thing i told my neurologist i was like i'll know um you know kind of like have a goal or guideline for myself of like if if i feel like it's truly working if i don't have to use cruise control in my neighborhood and so thankfully for the past i don't know say four months i haven't had to use it i'm starting to feel it now over the past month where it's it's getting back to where it was so i think it's time to up my medication but that's kind of my my go-to so um okay so in our last 30 seconds i would like to leave you with this botox comfy shoes toe exercises physical therapy whatever works do what you need to do to make you feel make your feet feel better but you do you take breaks when you need it sit and rest to give your feet a break exercise your toes and feet and continue to talk to your doctor this is a problem that will not go away so you choose how to handle the pain thanks for tuning in while a lot of us have to put our high heels on the shelf for good sorry brian enjoy your comfy shoes and take a minute to feel sorry for those that have to or want to wear heels for fun even though they look cute they're a to wear 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Channel: The Secret Life of Parkinson's

Views: 8,974

Keywords: parkinson's, young-onset parkinson's, YOPD, PD, Parkinson's caregiver, PD diagnosis, the secret life of parkinson's

Id: EtGBjTmsI0A

Length: 8min 43sec (523 seconds)

Published: Tue Feb 15 2022