Thanks for posting this! I have a still mild form of dystonia (I think so.) additional to a weird autoimmune thing which forced me into a wheelchair several times a year. And I was recognizing myself when you said, your character doesn't fit to your illness. I say that all the time. I love sports, obviously there are none in my life, when you don't like to think, your physiotherapy is a sport. I love dancing, I dance now sitting, moving bodyparts that are ok with it at this time. Good Luck! Naja
I don't really know if I have dystonia or not,I feel muscle contractions in my right waist,neck,wrist,anckle, and leg. sometimes I have hard times sleeping because I have to keep twisting parts of my body. I can control it though, but only sometimes. have you ever heard of my situation?
Thankyou for your time :)) I reallly want to know! I've been suffering from it since 7th grade and I still don't know what it is.
I also suffered from dystonia- had it on one side of my body , hemidystonia, it progressed over the years. I had a cryothalamectomy when I was 27 which helped immensely. I can walk today and live a full life. You did an amazing job describing the condition. Please keep the faith. I saw Dr. Lebotainaire a surgeon at Yale New Haven Hospital in CT I would recommend speaking to him!
may i just say how inspirational you are ! ...i suffer from ulcerative colitis and when it makes me ill im forced to stay in bed or in hospital for days and sometimes weeks and now thanks to you and your videos (which i love) i have something to distract me....Thank You :)
Thank you so much for this! It is, indeed, a horrible, and very painful thing to live with. My doctor mentioned that startle reflex because any sudden noise will set it off for me, as well as change in emotion. lol, if my wife gives me a kiss, I drop! My brother calls me a feinting goat.
Thank you for giving such a personal view of this disease. I am a medical student here in Ohio (USA), and met my first patient with myoclonic dystonia. I was researching the disease, and I came across your video. It is so helpful to hear how your movement disorder has affected you, but also how you continue to live your life to the fullest. I feel a bit more prepared to talk to the kids about the disease, how it might affect their daily life, and to give a little hope. Thank you very much!
You are such a beautiful person! It's so amazing and inspiring that you can share so much of your warmth and passion to make others feel happy, even while it costs you an inevitable spasm attack. You're always such a beacon of positivity and light, it seems like you must mentally have the illness by the balls, since you it never trumps your lovely character. I adore all of your videos, and thanks so much for sharing Suzy!!!
Didn't your doctor or you try a shut of Botox injection? I have action Myoclonus , maybe Lance Adamson syndrome but still not sure what is it for the years. My symptom don't have Dystonia , It is so strange because yesterday I decided to go back to hospital, because it get worse. I now am ( probably ) happy as I'm treated under great doctor in Junten, I really hope you'll be fine and hope doctor could find out what has been laying down behind Myoclonus.
thank you for this video. as a medical student this has somewhat helped me understand this side of the disease (from a patient)
May God grant you the strength and more of the positiveness that you have and once again, thank you for sharing this personal side of your life with us
well done you for spreading awareness for yourself and others with Myoclonic Dystonia! I too have an invisible illness (auto-immune related), and it is hard for people to understand even though I look well, so I can empathise with you. Best wishes.
You may not even see this, as you posted this video so long ago now. I have a chronic illness - not dystonia, and I don't think it's as affecting as what you go through every day, just something that causes me chronic pain. You have so much grace, dignity and humour.
Thank you for this video, and for every single one you post, because while they're a labour of love for everyone who makes them...they're so much more a labour of love for you. As one of your viewers, I really do appreciate it.
Hello. I'm a med student and I just wanted to say this video was really informative from an off-the-books viewpoint and I really appreciate you taking the time to communicate a very personal part of your life. Thank you, I wish you all the best.
Wow. Thank you for your presentation, Suzy. I don't know what I have developed since a few injuries to my spine and head, but it is clearly not dystonia. Doctors refuse to diagnose it as anything but "nervousness", when I go into full leg spasm, sometimes torso and rarely arms as well. I do not think it is dystonia, but definitely it is a form of seizure. Not to be all talking about ME here or anything, but you've made me think. I'll suggest dystonia to the doctor just to get a real diagnosis ;)
@Wittje84 Vind ik lief van je, dank je wel :) En je hebt goeie timing hehe. Ik moet zo weer naar de neuroloog en ik was wat zenuwachtig, dus zo'n lieve comment doet me goed!
Wow you're such a brave and amazing human being. I am so glad you were able to go to that kpop concert and fullfil a dream and fight off this illness! Suzy Fighting! <3
you are an inspiring person and it is incredible the strength that you must have in order to go through everyday with this condition and yet you remain cheerful and positive! Your video made me smile because I think it's important that people are educated about such conditions. Plus i like you a lot as a person. If I met you in everyday life I would definitely go out of my way to befriend you. =) thanks for the video, it was very enlightening. =)
Thank you for this Video. It needs courage to live positively with this illness. You are great. I am a medical student who now study in Neurology Department, I really appreciate your presentation, not many people or patients are willing to share their symptoms with us, but without experience we can't learn ;-) So, thank you :-)
Wish you live well in Netherlands. It's a nice place, beautiful and civilized :-) Your fortitude towards this illness reflexes the glory of humanity.
sorry if i missed this in your vid, but how often do you experience these symptoms? Is it throughout the day, do you go days without it? is it something you can someone control? (by avoiding situations that might overwhelm you). Thanks
you are just perfect the way you are... you keep smiling all the time :)
you know when some1 loses something, they get blesses or gifted with another thing, and the thing you are gifted with is so rare to find it is just your personality and character is so awesome!! your charming... just keep smiling :)
thankyou very much for opening up. I'm studying to have a job in the medical field and this has been helpful for me. you have such an amazing attitude, you're very inspirational
Wow i was beginning to think i was the only person suffering with this under the age of 40 .
Im 33 and have had the condition since i was 15.
I never thought about doing a video and have never meet another person who suffers with the same condition so this was soooo great to come across just to hear someone else make sense of it .
At the moment i take Topamax 8 times a day (a very HIGH dose) but have been on about 15 different meds over the years ...
Hi Suzy, I'm a new subscriber and really do think this is a very good video. Thank you for making it, being so open and raising awareness about this condition. I don't have it myself but have had Cerebral Palsy since birth and although not quite the same, can relate to a few of the things you say here. I have favourited this one as I do feel it's very well made and awareness should be raised. I love your positivity too and think you're a delightful person (◕‿◕) Wishing you a great weekend x
It's so nice to see your upbeat attitude, I think you are very brave. You seem like such a sweetheart, it makes me so sad that someone like you has to suffer at all. I know it sounds weird, since we don't know each other, but I'll put you in my prayers :)
you should really try a so called "ketogenic diet". On the "Perfect Health Blog" you can find some information about it. Try it for maybe for a month, see what it does for you. If your situation improves, you can adjust the diet to your personal level and needs.
Also, you should look into "paleo" or "primal" type of diets.
Myoclonus is very uncomfortable, even when it's not severe. Mine is so mild compared to this. I don't have dystonia, but I do have partial seizures and myoclonus, with no diagnosis as of yet. I'm not close to being disabled by my symptoms, but they are distressing and affect my ability to work. This is a very informative video. I'm very impressed with how well you can control it in this video. Good luck to you.
I love how you still smile and seem cheery. :D I never would've guessed that you had this condition. You inspire me & I'm glad that you are brave to show this to us & I'm grateful to have watched this. I hope the best for you! :)<3
This was fascinating..I had never heard of this condition before and I felt inclined to do further research after watching it. Thanks for sharing this with us all. You are a great inspiration. I am a new subscriber and I love your videos. xx
I like your presentation and love the comment about your support and the sadness of knowing others may not have support .Very caring,I to suffer from Dystonia but unlike you have found it a struggle,as you rightly say somedays you are fine and others a nervous wreck and others ..Well,you know as I do.I Hope you are coping at this time ,Fellow Sufferer.
@gringoboy9 I'm so sorry to hear that you suffer from Dystonia too :( It's definitely a struggle for me too, especially dealing with people who don't understand and all the physical troubles that Dystonia causes. Sometimes it really feels like being on a never ending roller coaster, doesn't it? Take care!!
Hi! I'm a nursing student and I decided I should watch a little clip on dystonia to get a better understanding of what it is. Thank you so much for this. I'm glad I came across your video. Not only did I get a good understanding about this condition, but I also was moved by your optimistic attitude! :)
We'll I Guess We both have to live with some thing our whole lives... You were diagnoste with Dystonia I was born with XXY ( Unkown Gender ) :D But I'm proud of it even if people think its Shocking.... Live it up and Party On!
@svbcrypto Hehe no you can't :) I have to say I feel extremely lucky I have such a supportive and loving family and circle of friends. I can't imagine what my life would be like if I didn't have that support system and I really feel for Dystonia patients who don't have that :(
@Dottilicious In terms of understanding myoclonic dystonia to ease its effects, if possible, what kind of research do you think should be done? I could not help wondering about why the myoclonic attacks seem to set when there is too much stuff going on around you .. about luck -- more like courage, effort and good humor on your part!! .. by the way, a lot of superheroes try to "appear normal" as well ;)
Thank you for being open about how Myoclonic Dystonia affects you. I was recently diagnosed with it after 12 years of not knowing and am trying to learn more about it, and seeing an open and honest video helps. Keep doing what you love to do dispite the challenges. Thank You again.
Thank you for being open about how Myoclonic Dystonia affects you. I was recently diagnosed with it after 12 years of not knowing and am trying to learn more about it, and seeing an open and honest video helps. Keep doing what you love to do dispite the challenges. Thank You again
Sweetie! YOU ROCK! Wow... my good friend referred me to your video. I suffer from Cervical Dystonia...severe...it sucks but it's amazing to get in touch with wonderful people such as yourself that suffer from the same disorder. This is a wonderful, informative, sincere video.. You are so strong and beautiful, I had to subscribe!
you're wonderful, beautiful, in and out and an absolute inspiration. your strong will power, your cheerfulness and generosity in sharing your story move me profoundly. i discovered your wonderful makeup videos today and have become your fan. you're obviously very creative (i'm a creative person too and feel connected with what you do and say in this video) and talented. may god bless you. with love, julie
I already love your videos but henceforth I will consider twice now the value of each tutorial that you post, you make so much efforts to make them and put so much of you in them!
Thank you for posting this video! It helped me to realize what dystonia is. I'm preparing my neurology exam and it's helped me to move on and to study more! You are true inspiration! Go girl! :-*
Thank you for posting this video! It helped me to realize what dystonia is. I'm preparing my neurology exam and it's helped me to move on and to study more! You are true inspiration! Go girl! :-*
Thank you for posting this video! I prepare my neurology exam and it helped me a lot to realize what it is and to give me more strength to move on to study more! You are inspiration! Go girl! :-*
Thank you so much for sharing! I don't have myoclonic dystonia but I have sialidosis type 1 which includes myoclonus syndrome. Watching this and hearing what your life is like helped me to know that we have a lot of similarities. I use a wheelchair and sometimes try to use my walker but if someone steps in my way or even walks too close to me I can fall. Thank you for making me feel not so alone.
Thank you so much for sharing! I don't have myoclonic dystonia but I have sialidosis type 1 which includes myoclonus syndrome. Watching this and hearing what your life is like helped me to know that we have a lot of similarities. I use a wheelchair and sometimes try to use my walker but if someone steps in my way or even walks too close to me I can fall. Thank you for making me feel not so alone.
Ik vind het echt super moedig dat je zo je verhaal heb gedaan en ongelooflijk stoer dat je ondanks alles je doe wat je leuk vind, het maken van tutorials ed!
thanks for this, I didnt know about any of this so i am slightly more informed now. Can you type? Just wondered since you cant write so much. I LOVE your channel!!! kiss kiss!
You don't have "sucky" genetics! They may not be those of an Olympic athlete but you're alive! and you can smile and laugh and you're a very pretty girl :)
Wauw, wat een goed filmpje! Ik wist helemaal niets over (myoclonic) Dystonia maar dankzij jouw filmpje wel :) Je komt heel sterk en positief over, ik heb bewondering voor je <3
Goed dat je deze video gemaakt hebt. Ik heb ook myoclone dysytonie, soms niet gemakkelijk maar je leert er uiteindelijk mee leven. Computers zijn de oplossing voor mij om het wat beter te maken. Zo hoef ik mezelf ook niet meer druk te maken over schrijven of iets die er niet goed uit ziet.
Het is inderdaad waar dat sommige mensen het niet begrijpen en er raar op reageren
@marion2u Wow! Ik kom niet vaak andere Dystonie patiënten tegen uit NL/BE! Je hebt gelijk, je leert er uiteindelijk mee leven. Wanneer is bij jou de diagnose gesteld? Neem je medicijnen in?
@Dottilicious Inderdaad! Ik denk dat ik 12 jaar ofzo was, ik ben er nu 21. Schrijven gaat niet goed, alsook gewoon andere handelingen gaan een beetje stroef en al 'bevend'. Ik heb het ook in mijn gezicht wat wel lastig is. Maar hoe dan ook sta ik nu voor de klas en heb ik de 'schaamte' overwonnen.
Ik heb medicijnen getest maar die maakten mij zeer vermoeid dus ben ik gestopt ermee. Nu doe ik gewoon relaxatietherapie.
you are such an adorable and inspiring person i just came across your channel today and i am definately subscribing.. you are great at what you do and thank you for all the wonderful makeup tutorials! =]
You're absolutely beautiful...even if you are a bit on the clumsy side. :) The only condition you suffer from is the human condition. We all have it. Every single one of us. Is there any way we could become pen pals? I really mean that. You're one of the heros. I'd love to write you...Let me know.
I have Myoclonic Dystonia Syndrome as do 5 others in my family. I love this video - describes so well the issues I face.Thanks. Excepting the make-up - I don't wear any!!
Nou meis ik kijk altijd graag naar je filmpjes en nu ik dit filmpje heb gezien kijk ik met nog meer plezier(wetende dat het je zoveel moeite kost om ze te maken).
Ik vond je al top maar jij verdiend echt een pluim en daarnaast ben je gezegend met zulke lieve mensen om je heen. Ik hoop nog veel filmpjes van je te zien!!
Thank you for posting this, I have a firm diagnosis of Myoclonic Dystonia and have had problems with it since the mid 90s, I am now 28 the neurologist has finally diagnosed it. The medical profession in the UK shed so little light on this condition, thanks Suzy this has helped me explain it to people, you've done a great thing
He has had clean MRI and EEGs. All blood work is normal. The last neur. Seemed very concerned and felt that this might be a praxsamal movement disorder. I think he has PNKD. Did you have all of these test befor getting diag? I feel like we can't get an answer because his movements are so abnormal for his age. There is a history of tremors in my family but not until 60-70years of age do the tremors apear.
Noah has been on seizure meds for 6wks and his eps have went from 1-2 hours 2-3 times a day, to 5-10 mins, 1-2 times a day and he has had some days with no eps. He is going for 3rd EEG (this one 24 hour) and he is having CT scan (full body) to rule out cancer (neuroblastoma). He has seen 3 ped neuro. And has only been diag with stereotypy.
Hi, my son has had involentary movements for the past 6 months. He is 19 mths old. Do u mind to look at his videos and read some of his symptoms/comments (video Noahs eps has very detailed info) and see if u see and similarities in your disorder and his unusual movements? When did u get diag and when did your movements start?
Honestly from watching your videos you come off as the average woman. You deal with this really well and you seem so'normal' to me; I would never have imagened you had such a suvere illness. Kudos to you, I hate it when people who are disadvantaged like this think that they can't be like most other people in most ways <3
Wow I am so impressed, I have been watching your videos for some time now and only now see this one, I never ever would have guessed. Thank you so much for going to the trouble of making tutorials that I love so much.
And if you ever need anything, even just some girl to take you on a makeup haul, I'm absolutely there for you (wherever you live, Holland is small).
Just wanted to say you are an inspiration not to mention Fabulous! I never comment on youtube videos but your videos are from the heart, keep doing what your doing and i'll be checking in on your channel regularly! xxxx
YAY- yeah no, not that you have it. But that you shared your story. I have dystonia too, and can relate to it being embarrassing. I am proud of ya and grateful. HUGS- Shay
Hi Shay! :) I just checked out your channel! Dystonia is such a sucky, sucky, SUCKY illness to have to deal with. But you have such a wonderful attitude :)
Thank you for sharing about your dystonia. It is so important to raise awareness of movement disorders. Great to see you have such a positive attitude.
Dude! You are a bad ass. I LOVE it when people adapt to a disability without letting it control them. I loved it when you said you dont like using your wheelchair because you don't want to get lazy. EVERYONE should learn from your optomism and determination. You're stronger than most people. NEVER loose that quality.
Thank you for sharing... I'm glad you did. Another guru who I recently learned about an illness with was Risa who told about her experience with leukemia. I think both of you are very brave and very strong for telling the world about your diseases and how you deal with them and that while it's hard if you work at it you can accomplish a lot. I love hearing about things like these because it opens my eyes to the people around me and it helps me personally to not be quick to judge. Thank you.
How do you control the shaking of your head and hands? My daughter Jessica can not stop the attacks. Her tremors and spasms are severe and she has no control on it at all. Her cramps are throughout her body but, the lower legs cramp up and "freeze" for several hours to days. Please let us know how you control yours. We will try anything. Thank you. Good luck to you. Hold your head high!
I wish I knew. I honestly have no idea. I have certain things that trigger attacks, like I mentioned in the video. And sometimes it happens for no reason at all. Usually throughout the day I get "bursts" of Dystonia and then a break in between. Mostly I have tremors ranging from very minor to very heavy.
My cousin also has Myoclonic Dystonia (hence this diagnosis by our neurologist) and it's the same for her.
Does it run in your family other than your daughter? Hang in there!!
We had the gene study done when she was first diagnosed and it showed no genetic findings.I wonder! . I occasionally have tremors and spasms of my left arm, face and when I smile big. My mom has tremors of her head and arms. Of course we have very mild symptoms compared to Jesi. She seems to be getting weaker and walking is getting harder daily. I am worried. She is almost needing a chair all the time now. .Keep the faith and keep smiling. Jesi does and I wonder how some times.
I know that when her head is shaking at times, she can make the tremors stop as long as she is holding her chin. As soon as she lets go, it returns or is even worse. I wonder if the problems she had as an infant were the start of the disorder? She had quit breathing many times and spent a lot of time in the hospital for the first few years of her life. No one can explain that either! Would like to know!!!
Thank you for sharing. Im so sorry that you go through this. But you are such a sweet person and Im so glad you aren't affected in the fact that you dont let it affect your personality!
Thanks for sharing and thanks for accepting my "friend invitation"!! You are so sweet!!! Purple is my favorite color too!! <3 and my best wishes for a happy holiday!
Hi sweety, thank you for sharing, I learned somthing new today. You are an inspiration, I could tell you have a brave and loving heart! Happy Holidays to you and I look forward to seeing you around on Youtube. A very warm and tight virtual hug to you.
Hehe I have over 8 years of practice ;) But in all seriousness, I try to hide it because I want people to see me as Suzy and not as the "sick girl". My illness doesn't define who I am, it's only part of me :)
But I remember the first two years of being ill, oh man, I was a big (well...big...) ball o'self pity hahaha.
Jesi tried to hide hers for years also but, she can no longer hide it. The tremors are severe and her legs give out and she falls . She hates the stares from ignorant people. Adults are much more cruel than children are when it comes to making comments about a disabled person. It breaks my heart to see her hurt. We hope to do some education and get the message out to the world so they can see we are all different but all the same too.
You know Suzy this video really shows what a truly amazing person you are. I think it's great that you can share with people the knowledge about what you have and how you are reaching out to people who have it in the process. And you don't even complain about it!
You are such a brave woman! I am so happy I discovered your channel because you are sweet, skilled and very beautiful. You are an example of courage. I wish you all the best in the world!
wow I would have never thought you have a chronic illness, and I think it´s great that you shared this with us. Since I´m almost ready to graduate from med school this was particularly interesting to me, to not only hear about physical symptoms but how it affects you in everyday life and how you deal with it. It seems like you learned to live with it very well, no medication in the world can give you that kind of open and positive attitude!
Now that is exactly why I wanted to talk about my Dystonia :) There are so many doctors out there who don't know exactly what Dystonia is, or they think it's the same as Muscular Dystrophy (soooo frustrating).
So to hear that this video was particularly interesting for you because of your educational background....well, it brought a smile to my face :)
Thank you so so soooo much for leaving a comment, it makes me feel that I did the right thing by posting my video!!
You definitely did the right thing. It´s not like everybody on Youtube has to be completely transparent to their viewers, but an illness is nothing to be ashamed of. And I think people can handle hearing about it!
And it´s always good to raise awareness for more rare illnesses that don´t have their own ribbon if you know what I mean ;-)
I think it is great how you hndle all those things- it must be hard beeing so effected by things that your body does without you telling him what to do- but you seem happy after all.
So this is one of the times where i come to think that everyone has to be very thankfull for health.
Anyway i just discovered your Channel two days ago and i love it- you are very sweet.
Hehe thanks! And yep, we definitely can! We are just forced to be a little more creative when it comes to dealing with certain everyday things. And anyone who thinks we're inferior, should get a good slappin' ;)
But how are you? I read on your channel that you got hacked? :/
I also just wanna say that was so amazing, I feel liek I know so much about this illness now that I never knew, thankyou so mucha nd well done for eveything you do :)
Suzy, thank you for educating us about your illness. It takes a big person to do this! I am very proud of you for sticking with your hobby of making videos despite how long it takes. I would imagine that others would feel so discouraged and give up. You are such a sweet person and I'm glad you always have someone close by to help you when you need it. *hugs* - Kathleen
Amanda, I am so sorry to hear this illness you have and after looking at so many videos of yours, I am sure that you cope with it so well, I hope this illness will go away as time goes by... you're in my prayer :)
But you do! You've had your own health battles to fight recently and you're still here and you deal with it. So hey, I would say that you kick ass, missy ;)
Toevallig heb ik niet al te lang geleden een documentaire gezien over dystonia. Die vrouwen hadden het heel erg en konden nauwelijks praten tussen de krampen door.
Kan het ook erger of zwakker worden na verloop van tijd?
Yep, ik heb ook van die periodes dat ik zo erg verkramp dat ik alleen maar dagenlang stilletjes in bed kan liggen.
Was dat toen die docu bij Oprah?
Bij Myoclone Dystonie is het verloop van de ziekte erg onduidelijk. Sommigen merken een verbetering, anderen blijven stabiel en weer anderen merken dat het steeds slechter gaat. Het is dus maar afwachten.
Dat heb ik idd ook :) Als ik me heel erg concentreer op iets, dan kan ik de boel goed stil houden. En daarna krijg ik meestal een flinke aanval. 't Moet er blijkbaar toch uit of zo, LOL.
Enne, dank je wel :) Maar look who's talking! Jij hebt zelf ook heel wat voor je kiezen gehad! En you're still going strong ;)
Dank je wel :) Het is ook hartstikke lastig en ik zit ook wel eens een potje te janken hoor omdat ik het allemaal beu ben ;)
Maar ik ben tegelijkertijd ook heel dankbaar dat het gaat zoals het nu gaat en dat het op dit moment vrij stabiel is (ff afkloppen ;)), want ik heb ook gewoon heel veel fijne dingen in m'n leven die veel meer aandacht verdienen dan die stomme Dystonie ;)
Dankjewel voor deze video, ik kende Myoclonic Dystonia niet en ik vind het heel fijn dat je het zo duidelijk en openhartig uitlegt. Ook hoe het jou beïnvloed in je dagelijks leven.
Ik zal met nog meer ontzag naar je video's kijken! Ik kan jou looks zelfs zonder spasmen niet namaken! ;-)
Misschien een hele stomme vraag, maar heb je er ook veel pijn aan? Je zegt spasmen en kramp, maar ik kan me niet goed inbeelden hoe dat zou voelen.
Heeeey Esmee! Hoeist? :D Tuurlijk kan je ze wel namaken, joh! ;) Als ik dit kan, kan iedereen het hahaha.
Maar om je vraag te beantwoorden: Ken je dat gevoel als je arm of been in slaap valt? Zo voelt het, maar dan erger en stijver en...verkrampter (raar woord, I know :P). 't Is heel moeilijk uit te leggen, maar het voelt soms ook net alsof er een arm of been is uitgevallen en er een houten plank voor in de plaats is gekomen of zo haha.
Hier gaat het goed, op de bevroren vingers en tenen na ;-)
Ik vraag me nog wel af of de kramp en spasmen pijn doen. Of meer heel naar aanvoelen. Ik heb een keer een zenuw gehad die klem zat en dat voelde (na veel pijn) heel doof aan, en gevoelloos: alsof het slaapt. Maar het deed geen pijn, alleen heel naar!
Iig fijn dat je er een filmpje over hebt gemaakt!
Alvast een hele fijne kerst en ik wens je een goed (en een krampvrij ;-) nieuw jaar!!
wauw dit had ik niet verwacht ik wist natuurlijk niet heel veel af van deze ziekte, en vind het echt heel erg knap dat je dit zo open verteld! Het lijkt me erg lastig, en ik heb echt MEGA respect voor je want als ik hoor dat je over 1 tutorial al drie uur doet omdat je niet alles in 1 stuk kan doen, vind ik idd echt hardcore, ik ben der ff helemaal stil van!
Thanks for posting this! I have a still mild form of dystonia (I think so.) additional to a weird autoimmune thing which forced me into a wheelchair several times a year. And I was recognizing myself when you said, your character doesn't fit to your illness. I say that all the time. I love sports, obviously there are none in my life, when you don't like to think, your physiotherapy is a sport. I love dancing, I dance now sitting, moving bodyparts that are ok with it at this time. Good Luck! Naja
MurzelMachtMusik 1 week ago
I don't really know if I have dystonia or not,I feel muscle contractions in my right waist,neck,wrist,anckle, and leg. sometimes I have hard times sleeping because I have to keep twisting parts of my body. I can control it though, but only sometimes. have you ever heard of my situation?
Thankyou for your time :)) I reallly want to know! I've been suffering from it since 7th grade and I still don't know what it is.
jenayen 1 week ago
How beautiful you are...
fkthlf 2 weeks ago
Thank you, so much. I hope you're doing well. This was a wonderful look into Dystonia...but more importantly, into your character. Beautiful :)
moopface1 3 weeks ago
I love how you're always smiling in the video =] stay strong! :3
MitsuruTifa 3 weeks ago
I also suffered from dystonia- had it on one side of my body , hemidystonia, it progressed over the years. I had a cryothalamectomy when I was 27 which helped immensely. I can walk today and live a full life. You did an amazing job describing the condition. Please keep the faith. I saw Dr. Lebotainaire a surgeon at Yale New Haven Hospital in CT I would recommend speaking to him!
Chresto813 3 weeks ago
Thanks so much for sharing...you are really beautiful inside and ot.
sdaryab 1 month ago
may i just say how inspirational you are ! ...i suffer from ulcerative colitis and when it makes me ill im forced to stay in bed or in hospital for days and sometimes weeks and now thanks to you and your videos (which i love) i have something to distract me....Thank You :)
crazyaboutclothes 1 month ago
Thank you so much for this! It is, indeed, a horrible, and very painful thing to live with. My doctor mentioned that startle reflex because any sudden noise will set it off for me, as well as change in emotion. lol, if my wife gives me a kiss, I drop! My brother calls me a feinting goat.
JerrodBalzer 1 month ago
shes too cute:P
peteypavello 1 month ago
Thank you for giving such a personal view of this disease. I am a medical student here in Ohio (USA), and met my first patient with myoclonic dystonia. I was researching the disease, and I came across your video. It is so helpful to hear how your movement disorder has affected you, but also how you continue to live your life to the fullest. I feel a bit more prepared to talk to the kids about the disease, how it might affect their daily life, and to give a little hope. Thank you very much!
tfoutz99 1 month ago
You are such a beautiful person! It's so amazing and inspiring that you can share so much of your warmth and passion to make others feel happy, even while it costs you an inevitable spasm attack. You're always such a beacon of positivity and light, it seems like you must mentally have the illness by the balls, since you it never trumps your lovely character. I adore all of your videos, and thanks so much for sharing Suzy!!!
CzarinaLace 2 months ago
Didn't your doctor or you try a shut of Botox injection? I have action Myoclonus , maybe Lance Adamson syndrome but still not sure what is it for the years. My symptom don't have Dystonia , It is so strange because yesterday I decided to go back to hospital, because it get worse. I now am ( probably ) happy as I'm treated under great doctor in Junten, I really hope you'll be fine and hope doctor could find out what has been laying down behind Myoclonus.
Stay well
Emi
angatou 3 months ago
thank you for this video. as a medical student this has somewhat helped me understand this side of the disease (from a patient)
May God grant you the strength and more of the positiveness that you have and once again, thank you for sharing this personal side of your life with us
take care and stay strong
spazcrunch 3 months ago
Your voice so relaxing, I love listening to you.
TheXOxygen 4 months ago
Stay positive!
MissKafukafu 4 months ago
Hehe, keep being 'hardcore' ;) You're an amazing person!
MTMewMew 4 months ago
well done you for spreading awareness for yourself and others with Myoclonic Dystonia! I too have an invisible illness (auto-immune related), and it is hard for people to understand even though I look well, so I can empathise with you. Best wishes.
DreamControl 4 months ago
Thank you very much for making such an informative video. You are an amazing and extraordinarily strong woman (:
jazziemvc 5 months ago
You may not even see this, as you posted this video so long ago now. I have a chronic illness - not dystonia, and I don't think it's as affecting as what you go through every day, just something that causes me chronic pain. You have so much grace, dignity and humour.
Thank you for this video, and for every single one you post, because while they're a labour of love for everyone who makes them...they're so much more a labour of love for you. As one of your viewers, I really do appreciate it.
Kamagrian 5 months ago
you seen like such a nice person, I think you are really brave for posting!
ashnkatt 6 months ago
Hello. I'm a med student and I just wanted to say this video was really informative from an off-the-books viewpoint and I really appreciate you taking the time to communicate a very personal part of your life. Thank you, I wish you all the best.
TTTrouble 6 months ago
Wow. Thank you for your presentation, Suzy. I don't know what I have developed since a few injuries to my spine and head, but it is clearly not dystonia. Doctors refuse to diagnose it as anything but "nervousness", when I go into full leg spasm, sometimes torso and rarely arms as well. I do not think it is dystonia, but definitely it is a form of seizure. Not to be all talking about ME here or anything, but you've made me think. I'll suggest dystonia to the doctor just to get a real diagnosis ;)
agnieszkamaria 7 months ago
Ik heb heel veel respect voor jou en de filmpjes die je voor ons maakt.
Wittje84 7 months ago
@Wittje84 Vind ik lief van je, dank je wel :) En je hebt goeie timing hehe. Ik moet zo weer naar de neuroloog en ik was wat zenuwachtig, dus zo'n lieve comment doet me goed!
Dottilicious 7 months ago
I can feel for your suffering. I used to suffer from dystonia myself. I have been fortunate to find relief. There is hope.
dystoniadisease 7 months ago
stay strong girl :) lots of people look up to you, very brave about it all. :D
RubyTwiggy 8 months ago
Wow you're such a brave and amazing human being. I am so glad you were able to go to that kpop concert and fullfil a dream and fight off this illness! Suzy Fighting! <3
efroggys 8 months ago
who on earth would dislike this video!
you are an inspiring person and it is incredible the strength that you must have in order to go through everyday with this condition and yet you remain cheerful and positive! Your video made me smile because I think it's important that people are educated about such conditions. Plus i like you a lot as a person. If I met you in everyday life I would definitely go out of my way to befriend you. =) thanks for the video, it was very enlightening. =)
findingmiddlegrey 8 months ago
You're amazing. (You might not realize how amazing. The way you talk, the way you smile, the way you laugh - :-D - you are amazing)
doIsoundlikeicare 9 months ago
wauw. ik vind je een geweldig persoon
Leonorvdb 9 months ago
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Thank you for this Video. It needs courage to live positively with this illness. You are great. I am a medical student who now study in Neurology Department, I really appreciate your presentation, not many people or patients are willing to share their symptoms with us, but without experience we can't learn ;-) So, thank you :-)
Wish you live well in Netherlands. It's a nice place, beautiful and civilized :-) Your fortitude towards this illness reflexes the glory of humanity.
Crcodila 9 months ago
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Crcodila 9 months ago
Thank you... thank you... thank you! You are so wonderful! =] I hope you are doing well at this time!
se7enspeaker 10 months ago
sorry if i missed this in your vid, but how often do you experience these symptoms? Is it throughout the day, do you go days without it? is it something you can someone control? (by avoiding situations that might overwhelm you). Thanks
bl4h1 10 months ago
yea i can relate to you, i just carrying some papers the other day and I got a papercut on my knuckle. So yea, i hear ya. its tough.
JP, you are great, very impressed.
nystagmus 10 months ago
you are just perfect the way you are... you keep smiling all the time :)
you know when some1 loses something, they get blesses or gifted with another thing, and the thing you are gifted with is so rare to find it is just your personality and character is so awesome!! your charming... just keep smiling :)
DrAbdullah91 10 months ago
you're awesome!!!
halcyonidealsmusic 10 months ago
thankyou very much for opening up. I'm studying to have a job in the medical field and this has been helpful for me. you have such an amazing attitude, you're very inspirational
halcyonidealsmusic 10 months ago
Wow i was beginning to think i was the only person suffering with this under the age of 40 .
Im 33 and have had the condition since i was 15.
I never thought about doing a video and have never meet another person who suffers with the same condition so this was soooo great to come across just to hear someone else make sense of it .
At the moment i take Topamax 8 times a day (a very HIGH dose) but have been on about 15 different meds over the years ...
And explaining the condition is so hard.
Cheapcooking 11 months ago
Hi Suzy, I'm a new subscriber and really do think this is a very good video. Thank you for making it, being so open and raising awareness about this condition. I don't have it myself but have had Cerebral Palsy since birth and although not quite the same, can relate to a few of the things you say here. I have favourited this one as I do feel it's very well made and awareness should be raised. I love your positivity too and think you're a delightful person (◕‿◕) Wishing you a great weekend x
ShonaC1969 11 months ago
It's so nice to see your upbeat attitude, I think you are very brave. You seem like such a sweetheart, it makes me so sad that someone like you has to suffer at all. I know it sounds weird, since we don't know each other, but I'll put you in my prayers :)
ShiroiyukiDesigns 11 months ago
Hi Dottilicious,
you should really try a so called "ketogenic diet". On the "Perfect Health Blog" you can find some information about it. Try it for maybe for a month, see what it does for you. If your situation improves, you can adjust the diet to your personal level and needs.
Also, you should look into "paleo" or "primal" type of diets.
Best,
Tony
MachTony1 1 year ago
A girl I recently started seeing has this, thanks for posting.
labcoat31 1 year ago
Myoclonus is very uncomfortable, even when it's not severe. Mine is so mild compared to this. I don't have dystonia, but I do have partial seizures and myoclonus, with no diagnosis as of yet. I'm not close to being disabled by my symptoms, but they are distressing and affect my ability to work. This is a very informative video. I'm very impressed with how well you can control it in this video. Good luck to you.
blobvision 1 year ago
I just watched your video and hope you are well. Good Luck to you. Hopefully someday soon your disorder can be cured.
Tamariana 1 year ago
<3
evershield 1 year ago
Thank you for your video! I just learned I have a genetic connective disorder and these videos REALLY help!
Jazzyteach65 1 year ago
I love how you still smile and seem cheery. :D I never would've guessed that you had this condition. You inspire me & I'm glad that you are brave to show this to us & I'm grateful to have watched this. I hope the best for you! :)<3
DudeeWoahhh 1 year ago
Thank you for sharing this, very well made, and very imnformative. I wish you all the best with whatever you do, I know you'll totally succeed :) !
spartan159 1 year ago
This was fascinating..I had never heard of this condition before and I felt inclined to do further research after watching it. Thanks for sharing this with us all. You are a great inspiration. I am a new subscriber and I love your videos. xx
senoritascouse 1 year ago
I like your presentation and love the comment about your support and the sadness of knowing others may not have support .Very caring,I to suffer from Dystonia but unlike you have found it a struggle,as you rightly say somedays you are fine and others a nervous wreck and others ..Well,you know as I do.I Hope you are coping at this time ,Fellow Sufferer.
gringoboy9 1 year ago
@gringoboy9 I'm so sorry to hear that you suffer from Dystonia too :( It's definitely a struggle for me too, especially dealing with people who don't understand and all the physical troubles that Dystonia causes. Sometimes it really feels like being on a never ending roller coaster, doesn't it? Take care!!
Dottilicious 1 year ago
@gringoboy9 Don't lose hope, I suffered for two years with dystonia but luckily found relief. For the last 16 years I have been near symptom free.
dystoniadisease 7 months ago
Hi! I'm a nursing student and I decided I should watch a little clip on dystonia to get a better understanding of what it is. Thank you so much for this. I'm glad I came across your video. Not only did I get a good understanding about this condition, but I also was moved by your optimistic attitude! :)
swalyani 1 year ago
We'll I Guess We both have to live with some thing our whole lives... You were diagnoste with Dystonia I was born with XXY ( Unkown Gender ) :D But I'm proud of it even if people think its Shocking.... Live it up and Party On!
anthonyvuitton 1 year ago
Thank you for the great description of dystonia .. not just the medical staff but also how it affects your life .. cannot find that in textbooks ..
svbcrypto 1 year ago 9
@svbcrypto Hehe no you can't :) I have to say I feel extremely lucky I have such a supportive and loving family and circle of friends. I can't imagine what my life would be like if I didn't have that support system and I really feel for Dystonia patients who don't have that :(
Dottilicious 1 year ago
@Dottilicious In terms of understanding myoclonic dystonia to ease its effects, if possible, what kind of research do you think should be done? I could not help wondering about why the myoclonic attacks seem to set when there is too much stuff going on around you .. about luck -- more like courage, effort and good humor on your part!! .. by the way, a lot of superheroes try to "appear normal" as well ;)
svbcrypto 1 year ago
Ik hou nu nog meer van je filmpjes :) <3
SnowWhiteGlamour 1 year ago
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Thank you for being open about how Myoclonic Dystonia affects you. I was recently diagnosed with it after 12 years of not knowing and am trying to learn more about it, and seeing an open and honest video helps. Keep doing what you love to do dispite the challenges. Thank You again.
courageyonggi 1 year ago
Thank you for being open about how Myoclonic Dystonia affects you. I was recently diagnosed with it after 12 years of not knowing and am trying to learn more about it, and seeing an open and honest video helps. Keep doing what you love to do dispite the challenges. Thank You again
courageyonggi 1 year ago
Sweetie! YOU ROCK! Wow... my good friend referred me to your video. I suffer from Cervical Dystonia...severe...it sucks but it's amazing to get in touch with wonderful people such as yourself that suffer from the same disorder. This is a wonderful, informative, sincere video.. You are so strong and beautiful, I had to subscribe!
xoxoxo
- Jess
MadMadamJess 1 year ago
Thank you for sharing your story. I've got Cervical Dystonia but Botox injections have helped me a lot.
Well done! Warner.
TheRevwmp 1 year ago
you're wonderful, beautiful, in and out and an absolute inspiration. your strong will power, your cheerfulness and generosity in sharing your story move me profoundly. i discovered your wonderful makeup videos today and have become your fan. you're obviously very creative (i'm a creative person too and feel connected with what you do and say in this video) and talented. may god bless you. with love, julie
ghimie22 1 year ago
Dear One, you are beautiful inside and out. Thank you for the inspiration.
bfcr2001 1 year ago
Wow, I understand everything now!
I already love your videos but henceforth I will consider twice now the value of each tutorial that you post, you make so much efforts to make them and put so much of you in them!
Have a nice evening :)
TheFlatErica 1 year ago 13
@TheFlatErica Thank you for the sweet comment!! :)
Dottilicious 1 year ago
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Thank you for posting this video! It helped me to realize what dystonia is. I'm preparing my neurology exam and it's helped me to move on and to study more! You are true inspiration! Go girl! :-*
jasminajelicns 1 year ago
Thank you for posting this video! It helped me to realize what dystonia is. I'm preparing my neurology exam and it's helped me to move on and to study more! You are true inspiration! Go girl! :-*
jasminajelicns 1 year ago
Thank you for posting this video! I prepare my neurology exam and it helped me a lot to realize what it is and to give me more strength to move on to study more! You are inspiration! Go girl! :-*
jasminajelicns 1 year ago
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Thank you so much for sharing! I don't have myoclonic dystonia but I have sialidosis type 1 which includes myoclonus syndrome. Watching this and hearing what your life is like helped me to know that we have a lot of similarities. I use a wheelchair and sometimes try to use my walker but if someone steps in my way or even walks too close to me I can fall. Thank you for making me feel not so alone.
Rachel31352 1 year ago
Thank you so much for sharing! I don't have myoclonic dystonia but I have sialidosis type 1 which includes myoclonus syndrome. Watching this and hearing what your life is like helped me to know that we have a lot of similarities. I use a wheelchair and sometimes try to use my walker but if someone steps in my way or even walks too close to me I can fall. Thank you for making me feel not so alone.
Rachel31352 1 year ago
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Rachel31352 1 year ago
Wow
Ik vind het echt super moedig dat je zo je verhaal heb gedaan en ongelooflijk stoer dat je ondanks alles je doe wat je leuk vind, het maken van tutorials ed!
Ik vind je echt een power chick!
b3autytas 1 year ago
thanks for this, I didnt know about any of this so i am slightly more informed now. Can you type? Just wondered since you cant write so much. I LOVE your channel!!! kiss kiss!
stuffstuffstuffyay 1 year ago
You don't have "sucky" genetics! They may not be those of an Olympic athlete but you're alive! and you can smile and laugh and you're a very pretty girl :)
Purple wheel chair! Love it!
truegirl2anna 1 year ago
I have it as well and so does my daughter.
ThugRen 1 year ago
God bless you!
FallaciesDetective 1 year ago
Goed dat je dit verteld. had net een reactie gegeven op een ander filmpje maar ik snap het nu :D
Ik snap hoe je je voelt heb zelf ook wat wat je niet kunt zien maar waar je wel heel erg op moet letten.
Succes er mee!
tokododoo 1 year ago
Wauw, wat een goed filmpje! Ik wist helemaal niets over (myoclonic) Dystonia maar dankzij jouw filmpje wel :) Je komt heel sterk en positief over, ik heb bewondering voor je <3
sophie2403 1 year ago
Goed dat je deze video gemaakt hebt. Ik heb ook myoclone dysytonie, soms niet gemakkelijk maar je leert er uiteindelijk mee leven. Computers zijn de oplossing voor mij om het wat beter te maken. Zo hoef ik mezelf ook niet meer druk te maken over schrijven of iets die er niet goed uit ziet.
Het is inderdaad waar dat sommige mensen het niet begrijpen en er raar op reageren
XXXXX
marion2u 1 year ago
@marion2u Wow! Ik kom niet vaak andere Dystonie patiënten tegen uit NL/BE! Je hebt gelijk, je leert er uiteindelijk mee leven. Wanneer is bij jou de diagnose gesteld? Neem je medicijnen in?
Dottilicious 1 year ago
@Dottilicious Inderdaad! Ik denk dat ik 12 jaar ofzo was, ik ben er nu 21. Schrijven gaat niet goed, alsook gewoon andere handelingen gaan een beetje stroef en al 'bevend'. Ik heb het ook in mijn gezicht wat wel lastig is. Maar hoe dan ook sta ik nu voor de klas en heb ik de 'schaamte' overwonnen.
Ik heb medicijnen getest maar die maakten mij zeer vermoeid dus ben ik gestopt ermee. Nu doe ik gewoon relaxatietherapie.
marion2u 1 year ago
Very helpful mate, I learned very much. Thank you for your great video
hottopicgirlacdc 1 year ago
you are such an adorable and inspiring person i just came across your channel today and i am definately subscribing.. you are great at what you do and thank you for all the wonderful makeup tutorials! =]
Much love from Australia xox
vivaLAmor91 1 year ago
You're absolutely beautiful...even if you are a bit on the clumsy side. :) The only condition you suffer from is the human condition. We all have it. Every single one of us. Is there any way we could become pen pals? I really mean that. You're one of the heros. I'd love to write you...Let me know.
jimdog1964 1 year ago
Hi
I have Myoclonic Dystonia Syndrome as do 5 others in my family. I love this video - describes so well the issues I face.Thanks. Excepting the make-up - I don't wear any!!
ythan42 1 year ago
ahhh, bless you! I admire your courage and positive attitude!
kisbodza2 2 years ago
Nou meis ik kijk altijd graag naar je filmpjes en nu ik dit filmpje heb gezien kijk ik met nog meer plezier(wetende dat het je zoveel moeite kost om ze te maken).
Ik vond je al top maar jij verdiend echt een pluim en daarnaast ben je gezegend met zulke lieve mensen om je heen. Ik hoop nog veel filmpjes van je te zien!!
brennie013 2 years ago
Thank you for posting this, I have a firm diagnosis of Myoclonic Dystonia and have had problems with it since the mid 90s, I am now 28 the neurologist has finally diagnosed it. The medical profession in the UK shed so little light on this condition, thanks Suzy this has helped me explain it to people, you've done a great thing
TheBkoseda 2 years ago
He has had clean MRI and EEGs. All blood work is normal. The last neur. Seemed very concerned and felt that this might be a praxsamal movement disorder. I think he has PNKD. Did you have all of these test befor getting diag? I feel like we can't get an answer because his movements are so abnormal for his age. There is a history of tremors in my family but not until 60-70years of age do the tremors apear.
kimholt25 2 years ago
Noah has been on seizure meds for 6wks and his eps have went from 1-2 hours 2-3 times a day, to 5-10 mins, 1-2 times a day and he has had some days with no eps. He is going for 3rd EEG (this one 24 hour) and he is having CT scan (full body) to rule out cancer (neuroblastoma). He has seen 3 ped neuro. And has only been diag with stereotypy.
kimholt25 2 years ago
Hi, my son has had involentary movements for the past 6 months. He is 19 mths old. Do u mind to look at his videos and read some of his symptoms/comments (video Noahs eps has very detailed info) and see if u see and similarities in your disorder and his unusual movements? When did u get diag and when did your movements start?
kimholt25 2 years ago
/salute
/respect
zzzap78 2 years ago
You are so Hard Core Suzy! We love you!!!
lakshp87 2 years ago
Honestly from watching your videos you come off as the average woman. You deal with this really well and you seem so'normal' to me; I would never have imagened you had such a suvere illness. Kudos to you, I hate it when people who are disadvantaged like this think that they can't be like most other people in most ways <3
IndigoOptimist 2 years ago
Wow I am so impressed, I have been watching your videos for some time now and only now see this one, I never ever would have guessed. Thank you so much for going to the trouble of making tutorials that I love so much.
And if you ever need anything, even just some girl to take you on a makeup haul, I'm absolutely there for you (wherever you live, Holland is small).
giudittav 2 years ago 20
Aww wat een ontzettend lieve comment! Dank je wel! :)
Dottilicious 2 years ago
I dont know what kind of dyskinesia I have, but I totally understand living with major spasms.
I was glad to find this video. There's not enough out there about it. I made a vid about it too, but its not my main focus.
You are really sweet and have a great attitude.
Take care
idranktheseawater 2 years ago
Just wanted to say you are an inspiration not to mention Fabulous! I never comment on youtube videos but your videos are from the heart, keep doing what your doing and i'll be checking in on your channel regularly! xxxx
msmaya121 2 years ago 20
Thank you so much!! :)
Dottilicious 2 years ago
YAY- yeah no, not that you have it. But that you shared your story. I have dystonia too, and can relate to it being embarrassing. I am proud of ya and grateful. HUGS- Shay
bennasdwarf 2 years ago 2
Hi Shay! :) I just checked out your channel! Dystonia is such a sucky, sucky, SUCKY illness to have to deal with. But you have such a wonderful attitude :)
How are you doing now, after your operation?
Dottilicious 2 years ago
I love you :] You're pretty inspirational and interesting
Alisha12287 2 years ago
Thank you for sharing about your dystonia. It is so important to raise awareness of movement disorders. Great to see you have such a positive attitude.
kaazoom 2 years ago
Thank you for sharing. I whish you all the best and that you will allways have al big lot of luck <3
Binirain 2 years ago
ik vind het echt rot voor je, maar je gaat er echt heel goed mee om!!
LisaTheBallerina 2 years ago
Dude! You are a bad ass. I LOVE it when people adapt to a disability without letting it control them. I loved it when you said you dont like using your wheelchair because you don't want to get lazy. EVERYONE should learn from your optomism and determination. You're stronger than most people. NEVER loose that quality.
JeremyJahns 2 years ago 3
Aww thanks Jeremy, that's really sweet of you to say :)
If I don't speak to ya before the 31st, Happy New Year!! ;)
Dottilicious 2 years ago
Thank you for sharing... I'm glad you did. Another guru who I recently learned about an illness with was Risa who told about her experience with leukemia. I think both of you are very brave and very strong for telling the world about your diseases and how you deal with them and that while it's hard if you work at it you can accomplish a lot. I love hearing about things like these because it opens my eyes to the people around me and it helps me personally to not be quick to judge. Thank you.
Beautymarked16 2 years ago
How do you control the shaking of your head and hands? My daughter Jessica can not stop the attacks. Her tremors and spasms are severe and she has no control on it at all. Her cramps are throughout her body but, the lower legs cramp up and "freeze" for several hours to days. Please let us know how you control yours. We will try anything. Thank you. Good luck to you. Hold your head high!
dasey22001 2 years ago
I wish I knew. I honestly have no idea. I have certain things that trigger attacks, like I mentioned in the video. And sometimes it happens for no reason at all. Usually throughout the day I get "bursts" of Dystonia and then a break in between. Mostly I have tremors ranging from very minor to very heavy.
My cousin also has Myoclonic Dystonia (hence this diagnosis by our neurologist) and it's the same for her.
Does it run in your family other than your daughter? Hang in there!!
Dottilicious 2 years ago
We had the gene study done when she was first diagnosed and it showed no genetic findings.I wonder! . I occasionally have tremors and spasms of my left arm, face and when I smile big. My mom has tremors of her head and arms. Of course we have very mild symptoms compared to Jesi. She seems to be getting weaker and walking is getting harder daily. I am worried. She is almost needing a chair all the time now. .Keep the faith and keep smiling. Jesi does and I wonder how some times.
dasey22001 2 years ago
I know that when her head is shaking at times, she can make the tremors stop as long as she is holding her chin. As soon as she lets go, it returns or is even worse. I wonder if the problems she had as an infant were the start of the disorder? She had quit breathing many times and spent a lot of time in the hospital for the first few years of her life. No one can explain that either! Would like to know!!!
dasey22001 2 years ago
Thank you for sharing. Im so sorry that you go through this. But you are such a sweet person and Im so glad you aren't affected in the fact that you dont let it affect your personality!
pirategalmakeup 2 years ago
Thanks for sharing and thanks for accepting my "friend invitation"!! You are so sweet!!! Purple is my favorite color too!! <3 and my best wishes for a happy holiday!
NatalieDouka 2 years ago
Hi sweety, thank you for sharing, I learned somthing new today. You are an inspiration, I could tell you have a brave and loving heart! Happy Holidays to you and I look forward to seeing you around on Youtube. A very warm and tight virtual hug to you.
Cindy
wickedcyn74 2 years ago
Suzy, I had no idea your dystonia affected you so much :( You seem to be quite good at "hiding" it!!
Your amazingly positive attitude is so inspiring.
xoxo Chloe
cheesestreet 2 years ago
Hehe I have over 8 years of practice ;) But in all seriousness, I try to hide it because I want people to see me as Suzy and not as the "sick girl". My illness doesn't define who I am, it's only part of me :)
But I remember the first two years of being ill, oh man, I was a big (well...big...) ball o'self pity hahaha.
*big hugz for mah Chloe* ;)
Dottilicious 2 years ago
Jesi tried to hide hers for years also but, she can no longer hide it. The tremors are severe and her legs give out and she falls . She hates the stares from ignorant people. Adults are much more cruel than children are when it comes to making comments about a disabled person. It breaks my heart to see her hurt. We hope to do some education and get the message out to the world so they can see we are all different but all the same too.
dasey22001 2 years ago
you are so brave to share all this. You have such an amazing attitude... thank you.
juicylucy73 2 years ago
Thanks for watching! :) I appreciate that so very much :)
Dottilicious 2 years ago
thanks for sharing your story. your such a sweet lady.. Happy Holidays to you and your family..
Native36babe 2 years ago
Thank you :) Happy Holidays to you and yours as well!!
Dottilicious 2 years ago
Thnkx for Sharing
U r always super luvely
LaMissNice 2 years ago
Aww thanks :D
Dottilicious 2 years ago
You know Suzy this video really shows what a truly amazing person you are. I think it's great that you can share with people the knowledge about what you have and how you are reaching out to people who have it in the process. And you don't even complain about it!
ashley198424 2 years ago 3
this is a great video, very informative.
you are a beautiful person inside and out.
micro100tube 2 years ago 3
You are such a brave woman! I am so happy I discovered your channel because you are sweet, skilled and very beautiful. You are an example of courage. I wish you all the best in the world!
Nefertarisparkles 2 years ago
*HUGS!* I think you are wonderful and so inspirational!
guitarrasara 2 years ago
I support j00 and love j00 and am there for j00! <3
Haaky 2 years ago
Thank j00, Haaky P00! ;)
Love ya <3
Dottilicious 2 years ago
You're one tough cookie! More power to you!
CallmeCalypso 2 years ago 2
Haha thanks! :D
Dottilicious 2 years ago
wow I would have never thought you have a chronic illness, and I think it´s great that you shared this with us. Since I´m almost ready to graduate from med school this was particularly interesting to me, to not only hear about physical symptoms but how it affects you in everyday life and how you deal with it. It seems like you learned to live with it very well, no medication in the world can give you that kind of open and positive attitude!
Again, thanks for sharing!
LadyProtector 2 years ago
Now that is exactly why I wanted to talk about my Dystonia :) There are so many doctors out there who don't know exactly what Dystonia is, or they think it's the same as Muscular Dystrophy (soooo frustrating).
So to hear that this video was particularly interesting for you because of your educational background....well, it brought a smile to my face :)
Thank you so so soooo much for leaving a comment, it makes me feel that I did the right thing by posting my video!!
Dottilicious 2 years ago
You definitely did the right thing. It´s not like everybody on Youtube has to be completely transparent to their viewers, but an illness is nothing to be ashamed of. And I think people can handle hearing about it!
And it´s always good to raise awareness for more rare illnesses that don´t have their own ribbon if you know what I mean ;-)
LadyProtector 2 years ago
I think it is great how you hndle all those things- it must be hard beeing so effected by things that your body does without you telling him what to do- but you seem happy after all.
So this is one of the times where i come to think that everyone has to be very thankfull for health.
Anyway i just discovered your Channel two days ago and i love it- you are very sweet.
Stay the way you are.
Best wishes,
Eva
MsEeTe 2 years ago
Thank you for sharing this! Chronic illness is annoying, but we can still live full lives! :) You're awesome!
Jannabelle126 2 years ago
Hehe thanks! And yep, we definitely can! We are just forced to be a little more creative when it comes to dealing with certain everyday things. And anyone who thinks we're inferior, should get a good slappin' ;)
But how are you? I read on your channel that you got hacked? :/
Dottilicious 2 years ago
I also just wanna say that was so amazing, I feel liek I know so much about this illness now that I never knew, thankyou so mucha nd well done for eveything you do :)
FernLaurax3 2 years ago
Well done Suzy! Your so brave. Don't feel ashamed you are a gorgeous girl. Have a lovely christmas xxx
FernLaurax3 2 years ago
Aww thank you very much :) Hope you will have a fantastic Christmas too!!
Dottilicious 2 years ago
Suzy, thank you for educating us about your illness. It takes a big person to do this! I am very proud of you for sticking with your hobby of making videos despite how long it takes. I would imagine that others would feel so discouraged and give up. You are such a sweet person and I'm glad you always have someone close by to help you when you need it. *hugs* - Kathleen
daysies1974 2 years ago
you are so strong! It's really cool that you talk about your illness very open!
xmarylu 2 years ago
Nah, I'm really wimpy mcwimp hahaha ;) But thank you!! :)
Dottilicious 2 years ago
Super goed dat je het post ! Ik wist helemaal niet wat het was, of dat het zo erg was :O
XxMarliesxX 2 years ago
Dank je wel voor het kijken :D
Dottilicious 2 years ago
Amanda, I am so sorry to hear this illness you have and after looking at so many videos of yours, I am sure that you cope with it so well, I hope this illness will go away as time goes by... you're in my prayer :)
stay strong!
hoeytje 2 years ago
Hehe 't is Suzy ;) Maarre, Amanda is ook een mooie naam hoor hahaha.
Maar dank je wel :)
Dottilicious 2 years ago
oh man, I bow down before you because of how gracefully you deal with this! I wish I had your strength!
shexilicious 2 years ago
But you do! You've had your own health battles to fight recently and you're still here and you deal with it. So hey, I would say that you kick ass, missy ;)
Dottilicious 2 years ago
you are AMAZING! :)
MissAntonia90 2 years ago
Toevallig heb ik niet al te lang geleden een documentaire gezien over dystonia. Die vrouwen hadden het heel erg en konden nauwelijks praten tussen de krampen door.
Kan het ook erger of zwakker worden na verloop van tijd?
sistyria 2 years ago
Yep, ik heb ook van die periodes dat ik zo erg verkramp dat ik alleen maar dagenlang stilletjes in bed kan liggen.
Was dat toen die docu bij Oprah?
Bij Myoclone Dystonie is het verloop van de ziekte erg onduidelijk. Sommigen merken een verbetering, anderen blijven stabiel en weer anderen merken dat het steeds slechter gaat. Het is dus maar afwachten.
Dottilicious 2 years ago
Nee het was niet bij Oprah... weet niet meer.
Ik geloof dat als ze zich ergens op concentreerde (de ene speelde viool) dat het dan ook helemaal weg was. Maar erna wel twee keer zo erg terug komt.
Ik ben onder de indruk hoe je er mee omgaat!
sistyria 2 years ago
Dat heb ik idd ook :) Als ik me heel erg concentreer op iets, dan kan ik de boel goed stil houden. En daarna krijg ik meestal een flinke aanval. 't Moet er blijkbaar toch uit of zo, LOL.
Enne, dank je wel :) Maar look who's talking! Jij hebt zelf ook heel wat voor je kiezen gehad! En you're still going strong ;)
Dottilicious 2 years ago
Ik vind het erg knap van je dat je dit allemaal verteld. En je legt het heel goed uit !!
Het lijkt me heel lastig om dit te hebben, maar je lijkt er erg goed mee om te gaan..
Echt heel veel respect voor je meid !!
xxx Sabine
Nails3Beauty 2 years ago
Ben ik met je eens. :)
imprezanic0le 2 years ago
Dank je wel :) Het is ook hartstikke lastig en ik zit ook wel eens een potje te janken hoor omdat ik het allemaal beu ben ;)
Maar ik ben tegelijkertijd ook heel dankbaar dat het gaat zoals het nu gaat en dat het op dit moment vrij stabiel is (ff afkloppen ;)), want ik heb ook gewoon heel veel fijne dingen in m'n leven die veel meer aandacht verdienen dan die stomme Dystonie ;)
Bedankt voor het kijken!! :)
Dottilicious 2 years ago
Dankjewel voor deze video, ik kende Myoclonic Dystonia niet en ik vind het heel fijn dat je het zo duidelijk en openhartig uitlegt. Ook hoe het jou beïnvloed in je dagelijks leven.
Ik zal met nog meer ontzag naar je video's kijken! Ik kan jou looks zelfs zonder spasmen niet namaken! ;-)
Misschien een hele stomme vraag, maar heb je er ook veel pijn aan? Je zegt spasmen en kramp, maar ik kan me niet goed inbeelden hoe dat zou voelen.
xxx Esmee
ehagendijk 2 years ago
Heeeey Esmee! Hoeist? :D Tuurlijk kan je ze wel namaken, joh! ;) Als ik dit kan, kan iedereen het hahaha.
Maar om je vraag te beantwoorden: Ken je dat gevoel als je arm of been in slaap valt? Zo voelt het, maar dan erger en stijver en...verkrampter (raar woord, I know :P). 't Is heel moeilijk uit te leggen, maar het voelt soms ook net alsof er een arm of been is uitgevallen en er een houten plank voor in de plaats is gekomen of zo haha.
Dottilicious 2 years ago
Hier gaat het goed, op de bevroren vingers en tenen na ;-)
Ik vraag me nog wel af of de kramp en spasmen pijn doen. Of meer heel naar aanvoelen. Ik heb een keer een zenuw gehad die klem zat en dat voelde (na veel pijn) heel doof aan, en gevoelloos: alsof het slaapt. Maar het deed geen pijn, alleen heel naar!
Iig fijn dat je er een filmpje over hebt gemaakt!
Alvast een hele fijne kerst en ik wens je een goed (en een krampvrij ;-) nieuw jaar!!
ehagendijk 2 years ago
amai Amanda ik heb echt zoveel bewondering voor jou...
petje af.. echt waar...
Prachtig dat je zoveel moed hebt om verder te gaan!!!
lof ya!!!!
en een heeele fijne kerst en nieuwjaaar!!!!
xxxKatleen From Belgie
pruts1000 2 years ago
Hoi Katleen! :) Thanks! En jij ook hele fijne feestdagen toegewenst :D
Oh enne, 't is Suzy ;) Hoewel Amanda ook een toffe naam was geweest natuurlijk ;)
Dottilicious 2 years ago
wauw dit had ik niet verwacht ik wist natuurlijk niet heel veel af van deze ziekte, en vind het echt heel erg knap dat je dit zo open verteld! Het lijkt me erg lastig, en ik heb echt MEGA respect voor je want als ik hoor dat je over 1 tutorial al drie uur doet omdat je niet alles in 1 stuk kan doen, vind ik idd echt hardcore, ik ben der ff helemaal stil van!
KNUF!
theartismakeup 2 years ago
Heel lief berichtje van je :) Thanks, Mar! :D
Dottilicious 2 years ago