Stories from a Bobble Head Nanna- Learning to live with Parkinsons Disease | Sue Edge | TEDxMandurah

[Music] one of the advantages of not being able to stand still i get electron to lean on good afternoon today i made a choice to get onto the stage safely rather come on by myself and take out the tedx sign or fall off the edge i think it was a good choice we always make choices every day and i'd like you to listen to my experience and the choices that i've made sorry but the choices are gone i had this down this is what mr p does he takes your brain and he scrambles it up and throws it out the back it's okay i'll cut this bit out of of the video okay imagine if you will imagine if you will you're living a comfortable life you've got a job you love you've got great friends great family and household chores take a normal amount of time to do who's cruising along you're a teacher who loves your kids you've got two beautiful children and three beautiful grandchildren you just don't think your life's ever going to change you're invincible but then all of a sudden your body starts doing strange things to you your brain starts scrambling things like when you're trying brushing your teeth you can't do a repetitive hand movement so you hold your brush and move your head up and down and you should see me trying to put makeup on not a pretty sign your toes try to curl and kiss your heel your insides are shaking madly but the outside's very still you're feeling like a walking heater you've got no virtually no clothes on and everyone else around just under a doona when you walk your hand comes up like this and your your arm comes up like this and your hand hangs like an italian sausage at the deli and you walk like this you shuffle and your kid's calling mr burns and then the panic attacks become a normal time normal occurrence every day so you decide maybe something is wrong and you stop procrastinating and make an appointment to see the doctor then come the tests tests upon tests cat scans mris blood tests cognitive tests any sort of test and you're just going crazy with tests and then you then two years have passed and you're still needing tests you your symptoms are not going away and you're accused of being it's all in your head get over it that was me 13 years ago but by luck i decided to go to a different doctor and he recognised my symptoms straight away he sent me straight to a neurologist neurologist moved my wrists moved my elbows swung my arms around and told me to do three simple things this this and tap my foot no trouble at all with my left side right side not not just hoping not a hope he sat me down and told me he thought i had parkinson's disease he was 99 sure the only way to be 100 sure is to cut into your brain and you have to be dead for that and dying just to prove a point was not on my egyptian agenda so i struggled to take him what he was saying and also makes you very dry in the mouth so i apologize you're either choking on your saliva or you can't haven't got any he said he sat me down and told me that and i couldn't take it in all i thought of was can i still go to norway and see my daughter at christmas time he wrote out a prescription for medication that would confirm my future with pd he said goodbye and said he'd see me in three months and as i stood up he said don't believe everything you read about parkinson's on the net and that was it know what's going to happen in the future no oh this is terrible no support groups to go to nothing i didn't know anything about parkinson's i thought it was an old people shaking disease that may just shake go in a wheelchair and die that wasn't a good thought at 50. i was on automatic pilot and so i was so glad my sister mandy was there to take me home i got very sad i felt very lonely and then i got really angry because i hadn't finished my life yet something huge and uncontrollable was taking away my life choices i had a degenerative incon in incurable neurological disease that i thought was going to take things away from me and then kill me so i sunk into a bit of a depression and then i told my family and friends i tried to be positive in front of them and it was really hard because i didn't want them to worry about me particularly my mum and i had this terrible thought that i was glad my dad wasn't alive to see me suffer because it would have killed him so then i needed i sorry that makes me very emotional when i talk about my dad like that so i decided to look up i decided to um find some inspirational quotes to help me i was flicking through the quotes one day and i saw one by michael j fox this one is actually is actually by michael j fox it says i don't have any choice whether or not i have parkinson's but surrounding that non-choice are a million other choices i can make and that really struck a note with me and i decided to fight this damn thing and not let it ruin my life but i needed to plan how was i going to do it teacher brain kicked in learn about it so i googled parkinson's the specialist was right dumb move there was so much information on there and a lot of it was so scary and then i found out years later that it's not true so i needed a new plan i rang up parkinson's wa and asked the nurse to come and visit me that was a good choice heather was my earth angel she was so knowledgeable about what was going on but the best thing she told me was you die with it you don't die of it you don't die of it you die with it great news best news i've had in two years it wasn't going to kill me i decided i needed to learn everything i could about it i wanted to go to every talk every lecture i wanted to be part of every research project that i could be holder and get done and i wanted to do it now but i had a problem i had so many thoughts buzzing around my head and they like me are totally unorganized the frustrated virgo and me wanted organisation but the creative free spirit wanted to do everything at once my brain was exploding so i decided to write a list and i did what you do i got a nice new exercise book i decorated the front cover i put stickers and dividers inside i covered it in plastic yes i'm a stationary nerd and a procrastinator and i sat down to write my list only problem was i'd use that all my own time and i'd gone off and i couldn't hold the pen to write the list so i'll just step out of my story for a minute and let you know the what an off time and then on time are the office when your medications stop working or it's not working very well or it's run out and that's really bad a lot of people it affects people differently in different ways mine comes out in bradykinesia i go stiff as a board my head can't move my face is like a mask i can't articulate and i'm not off now but i still can't articulate um and my hands and feet don't belong to me they won't do what they want i want them to do it's very debilitating but the on time is when the meds are kicked in and really good sometimes they're too good and i go crashing into walls but you probably saw that at the beginning but that's okay and when i first started i was taking medication a daily and getting seven hours of good on time in between but because it's degenerative i now take medication every three hours which means in a typical day for me from about 5 a.m to 10 p.m at night that's about 17 hours i get five hours of really good time and in that time i go like the clappers to get everything done i need to get done but to get those five hours i have to take 12 tablets a day and wear a 24-hour patch i took my meds kicked in great wrote my list what was i going to put on my list the first thing i needed to do was tell my grandkids what was going on because they were five six and eight and they were starting to worry about what was going on with me i decided to get a book to read to them to start them off as you do but i couldn't find a book the only book i found was grandpa had parkinson's had shaky hands went to hospital had an operation came home cured well that's wrong it's incurable why would you put that into kids pool so i did what teachers do and i made my own resource i wrote a book i wrote it from a perspective of the child telling kids what was going on with their nana so i sat down with my grandkids and we started to think about it it was an eye-opening experience and i can't talk about it without getting choked up so one of my grandkids is going to come and give a little talk to you [Applause] for as long as i can remember we've gone to nan's every school holidays in the beginning i remember chopped up fruit before going to sleep visiting her classroom after hours and feeling like a renegade going down to the duck pond with her and her helping us pre-make lunches for the school week ahead since her diagnosis things like that haven't been as possible she can still take care of us but sometimes it's a little more us helping take care of her too when i was little i used to think my nan had a superpower in the mornings we used to curl up in bed with her and she'd just tell us poems from memory without even having to read the book it was incredible but when i was about six i noticed something strange was happening to her her hands started shaking when she was doing things other than handshaking and her thumb started twitching and she dropped things all the time she stopped being able to play the piano and i could no longer rely on her pretty handwriting to label my school books with she couldn't really smile properly anymore and it was funnier than usual watching her try to get up off the couch when she couldn't put my hair in plaits anymore i decided enough was enough me and my siblings questioned her we had an interrogation we were like what's going on her and my dad sat us down and they told us that she had something called parkinson's my six-year-old brain deduced that that meant she was gonna die soon i was too scared to ask her the truth came out eventually though she was gonna be fine and she wanted us to help her write a book cool a lot more weird things started happening like her toes move around she needed me to rub her feet all the time which is weird change and my brother started calling her our bubble head nana which we thought would be a perfect name for the book when we go on walks she holds on to us to keep our balance but it's kind of nice because it's like getting a hug whenever we walk together my nan's house smells like paint and a thousand-year-old paper she has pretty much every art supply i you can think of so when we go down we can make anything we want homemade jewelry got it painting obviously drawing yeah she just bought eight million of the coolest pens you've ever seen no big deal or anything sewing sculpture costumes origami fairy houses jump how high there's paint on just about every surface in my nan's house it's amazing it's an inventive edifice castle of creativity holy temple of discounted art supplies my nan's house i'm really proud of my nan for writing a book and everything she's done she is a force of nature i honestly feel bad for this parkinson's fella sometimes he's no match for my nan she's an inspiration to me and so many others i love you man [Music] so grandkids taken care of i decided i needed to research proven ways to slow down the progression of parkinson's and for myself and other people and actually do them stop procrastinating i read that creative activity was very good at helping symptoms because the dopamine-based medication with the parkinson's do something to the creative side of your brain and it lets off a high it's a lot cheaper than drugs but yes yeah so the first thing i the first time i noticed spike in my creativity was that i was writing poems at stupid o'clock in the morning and i'd always wanted to paint pictures of i had them in my head i couldn't put them on paper suddenly i could paint fat long-legged birds and emus on colourful backgrounds but i had to change the way i did things to suit my symptoms so when i was off and needed to be painting i would put paint on this dirt on this hand that wasn't working and use it like this like a paint brush and do the backgrounds when i wanted to do the dots i could only do the dots if i had american idiot by green day blaring out on the speaker it's got the best best beat i painted non-stop for months and once i painted 42 paintings in 30 days my kitchen table is covered with paint and paper my chairs have morphed into multi-coloured sculptures my hairdresser plays what's next colour in sue's hair when she washes it every week and my hands look like a pro heart painting i paint on canvases i paint on paper and anybody and anything that stands to long enough i got painting in every part of my house but then i needed to get i needed to get this message across to other people's partners get them to get the bus so i formed a group called the unsteady hand mob which speaks for itself and that was for the people with parkinson's but also people affected their family and their friends so they could come along and join in the fun of our creative workshops i don't call it art or call it creative workshops or they won't come we have on the first third and fifth thursday of every month we have these workshops and lots of impromptu ones at my house but the social aspect afterwards is much as as much important as the painting is then i read about rocksteady boxing program in america this was having great success in slowing down symptoms so i looked around manager and after lots of knockbacks i found someone who would help me run a class so in november 2017 we opened our first class of boxing for parkinson's with three people but it quickly grew to 12 and we stayed like that until the coveted force knocked down i didn't want to stop when that happened so i made my own gym in my backyard i found a um one of those boxing things on the side of the road and set it up and as soon as as soon as we're allowed have more than one person exercising i started a boxing program for everybody and we have seven or eight every tuesday morning we box for an hour and talk for two hours once again the socialization is really important the third thing on my list was to educate the community it's the second most common neurological disease in the world and yet the average man in the street doesn't know much about it people are we've been the subject of hurtful comments and ignorant comments i've been accused of being drunk standing in the checkout trying to get my things where my hands aren't working i've been yelled at for using a disabled parking bay because i'm not in a wheelchair i've been really abused for using the um disabled toilets i remember i remember one day i was at mcdonald's and i walked through the door i was having a particularly wobbly day and crashed straight into the wall so i stood in the queue swaying and a little girl i used to teach raced up to me gave me the biggest hug so this is quite emotional gave me the biggest hug and just as i was about to say hello to her the adult with her yelled across mcdonald's get away from the disgusting drunk lady i was mortified i've had friends who are not allowed into clubs and pubs or even onto buses because i thought to be drunk so i take every opportunity to educate people about parkinson's because do you know in australia one in 250 people have it and when you hit 61 in 100 since about 250 so you'll find i've got it april when april is is partners awareness month and i do everything i can in april to spread the word educate and raise funds everyone that comes to my sessions are totally amazed at the amount of hidden symptoms there are it's sort of like a parkinson's iceberg i think you can see the tremor but there's 42 other symptoms hidden underneath then in 2018 i read a script of a play written by sue wiley from england she was diagnosed just before her 50th birthday and the best choice i've made so far is to produce that play it was brilliant was a great educational tool but it gave me another thing to say to think about accept adapt adjust i don't fight before you can fight the fight you have to accept that you've got it and that's really hard for some people and once you accept it then you adapt the way you do things so you have a great life and then you have to adjust the adaptions because you keep changing so that was a that's a brilliant thing to help to help to live by and the last thing on my list was to help people indirectly affected by partners that is the family and caregivers and other halves of the people with it i know lots of people with pd and their spouses often ask me questions i can't answer because i've got it and i'm single i cannot imagine what it's like for them to go watching their loved ones to deteriorate so i decided to start a luncheon club so once a month we meet for lunch and we've got 22 average people coming and the partners are really pleased with it happening because they know they're not the only ones coping and not the only ones getting across not the only ones feeling useless and helpless when they watch their loved ones it's really really important that you remember that pd does not discriminate it's not an old person shaking disease that kills you i was in my early 40s when i started having symptoms looking back on it i've got friends who are diagnosed in their 30s and one who was diagnosed at seven so sorry as i continue on this journey i'm positive motivated and happy and never never sure what mr p's got in store for me next it's just a gift that keeps on giving in conclusion no matter what life throws at you make sure you make good choices about what you do with your non-choice and make the world a better place remember life is beautiful and when it's a good idea to get up in the morning because the alternative sucks i choose to go on researching educating and badgering people to come to my boxing come to my art classes and come wherever i where i am just when i'm talking i'd like to leave you with the last quote that really sums everything up life is not about waiting for the storm to pass it's about learning to dance in the rain thank you [Applause] [Music] you

Channel: TEDx Talks

Views: 4,638

Keywords: Choice, Disability, Disease, Empowerment, English, Grit, Life, TEDxTalks

Id: cTyE0b6UVdg

Length: 20min 15sec (1215 seconds)

Published: Fri Oct 22 2021