Living with Myoclonic Dystonia

Hi, I'm Suzy and this video is all about my illness, Myoclonic Dystonia. For those of you who only visit my channel for my makeup videos, I'm afraid you won't like this one ;) But I felt that raising awareness about this disorder is important, as there aren't nearly enough people (or doctors for that matters) who know what it is and how big an impact it has on someone's life.

Overview:
0:02 - Intro
0:29 - Little Disclaimer
0:42 - What is Dystonia?
1:31 - Wikipedia Description
2:16 - Little example of Dystonia....
2:54 - Wheelchair?
3:40 - Dystonia & Everyday Life
6:12 - Emotionally....
7:06 - Dystonia & Makeup
8:12 - Last, but not least....

Thank you for watching :)

Category:

People & Blogs

Tags:

• Myoclonic
• Myoclone
• Dystonie
• Myoclonus
• Startle
• Reflex

[Wittje84]

Ik heb heel veel respect voor jou en de filmpjes die je voor ons maakt.

[Dottilicious]

@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!

[gringoboy9]

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.

[Dottilicious]

@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!!

[svbcrypto]

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 ..

[Dottilicious]

@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 :(

[TheFlatErica]

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 :)

[MurzelMachtMusik]

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

[jenayen]

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.

[fkthlf]

How beautiful you are...

[moopface1]

Thank you, so much. I hope you're doing well. This was a wonderful look into Dystonia...but more importantly, into your character. Beautiful :)

[MitsuruTifa]

I love how you're always smiling in the video =] stay strong! :3

[Chresto813]

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!

[sdaryab]

Thanks so much for sharing...you are really beautiful inside and ot.

[crazyaboutclothes]

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 :)

[JerrodBalzer]

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.

[peteypavello]

shes too cute:P