Twist: A Body At War With The Brain

My son is 8 years old, and has Dystonia. After filming my son's Dystonia for the doctors, and many years of fruitless searching, I decided to make a short compilation of videos showing the degree and type of Dystonia that he has...

Whenever Ashley tries to do anything, or becomes excited, happy, angry or frustrated, the Dystonia kicks in, twisting his entire body. It affects every muscle in his body, including vital muscles for eating, speaking, and swallowing. It even affects the muscles in his eyes...

Category:

Education

Tags:

• dystonia
• severe
• DBS
• Deep Brain Stimulation
• Cerebal Palsy
• CP
• Botox

[SBlazeBP]

Thank you for sharing your experiences with all of us. For those that suffer from Movement Disorders or have someone close to them that does seeing loving caring supportive parents/ people like yourselves inspire and encourage other to not give up. For everyone else it is insight to a harsh reality. Congratulations on DBS I hope upon his finalization of his settings you will be able to find some relief. The music only goes to show that even in the darkest of time ther is still lite to be seen

[promiseranch]

@SBlazeBP There is always light to be seen! Thank you for your kind words. Ashley has found MUCH relief with the DBS, and while we haven't found the magic setting, it's still been a miracle in our lives. Ashley's starting the 5th grade this year, and he can sit in his wheelchair, wear shoes, and use eye gaze for communication! NONE of these things would have been possible without DBS.

[gemiwing]

I'd love to hear his laugh- with a smile like that you just know his laughter would have you laughing too. Thanks for sharing your experience and helping to dispel that scary fog that can surround dystonia.

[promiseranch]

@gemiwing You'll get to hear his infectious laughter in the next video...

[Niickk58]

they have those pacemakers that they put on the brain to cure it.

[promiseranch]

@Niickk58 Sorry I didn't reply... There is no cure. Ashley does now have a DBS implanted in his brain... It's helped quite a lot!

[cheerchick4u4ever]

Parents like ya'll are rare. Ya'll have a great heart. Continue what you are doing. He is great.

[mszmaravilla69]

God bless him dont give up there has to be someone out there who can help him get better.

[qwertsy931]

Im so sorry.

I hope something will work out

[Keikayoko]

@Spyhunter107 Ashley was originally a boy's name, before it became popular as a girl's name

[RichyAight]

I have major respect in you for loving and appreciating your child as much as you do. I wish I had parents like you guys.

[lty2k84]

A very beautiful family. The song is soo adorable and strong, he will do great in his works.

[Spyhunter107]

You name your son Ashley?

[tinydancercindy]

that looks like one of my dystonic storms....normally I move alot...but during a storm I will do what he is doing. They last anywhere from 20 min. to 1 hour. Our group is called Twisted Friends on FB it is closed however but if you would like me to add you please let me know there are 200 of us there. My youtube channel is cindymcmahan11 or tinydancercindy, please subscribe. peace, cidy

[ChildOfTheSettingSun]

@Jackdomb213 I don't know about him, but it generally doesn't affect the cognitive development of a child.

[gothrottle]

PLEASE look into sinemet. It's a Carbidopa/levodopa supplement that has helped me live like I virtually do not have dystonia at all. I don't know if he would be responsive, but please look into it.

[Jackdomb213]

please PLEASE don't take offense to this, but is he cognitively disabled?