My dystonia

10/15/2025

I can't get back to the purpose of this page with the many unrelated and horrible follow suggestions. I apologize to my followers who are interested in updates and shares about dystonia.

09/20/2025

Why do we only have zoo walks to raise awareness? It's the definition of INSANITY. No one still knows it exists except those suffering. Some suffering don't know where to go fir help. Awareness is not being reached here.

Looking to meet others who really understand life with dystonia? Come along to one of our friendly Dystonia UK support group meet ups!

These gatherings are a great way to share your experiences with others living with dystonia, and to connect with people who just get it.💙

Upcoming group meet ups…

-West Midlands, 23rd August, 2-4.30pm, St George’s and St Theresa’s Church, Dorridge

-Lancashire & Fylde, 28th August, 2-4pm, Fairhaven Lake Cafe, Lytham St Annes

-Cambridge, 30th August, 2-4pm, Cambridge Botanic Garden

-East Yorkshire, 5th September, 2-4pm, Morrisons Community Room, Bridlington

-North East, 6th September, 12pm, Toby Carvery, Newcastle upon Tyne- with a visit from Dystonia UK!

To book your spot, please email info@dystonia.org.uk.
For more info: check out www.dystonia.org.uk/your-local-support-group, packed with brand new content!

09/27/2022

Now ik why i was so sick this weekend. I waiting patiently to go home.

05/26/2022

AWARENESS IS KEY.

May is Neurofibromatosis Awareness Month and that’s why we’re thrilled to announce the addition of (NF) to the list of incredible, life-changing organizations we support.

Neurofibromatosis is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time. NF Northeast works tirelessly to bring hope to those affected by neurofibromatosis and allied disorders through advocacy, support, and awareness while promoting research and enhanced clinical care.

With every Olivia’s purchase, a portion of our proceeds goes directly to the Olivia’s Organics Children’s Foundation to support the work of many deserving local organizations.

Learn more about the organization today by visiting nfnortheast.org.

04/29/2022

https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.prlog.org%2F12911771-amanda-lockhead-promotes-awareness-of-under-recognized-brain-disorder.html%3Ffbclid%3DIwAR0KmAGnWzF3qK9Z6nyii6uBnjvmexTLb74pDRBxxYjxeQ3qWveOSVH14A8&h=AT0mX4YJBpl-oE9AyHecmXG3tm3H994Gt5B0-gI6uLH2AsuY_g0qjhnT5iFj_GiRfUWS2oj0RLW56cRfEaFn_r9FfEvhqvSB5kqWFva8l-Ze6pK9TRGUDNxaGCSXqhaPHyy-7z013rGT

Amanda Lockhead Promotes Awareness of Under-Recognized Brain Disorder. Nashua Dystance4Dystonia 5K Walk/Run is Sunday, May 15, 2022 - PR12911771

02/13/2022

People in my life think dystonia is a walk in a nice park. 14 years of treatments, pain, fear (afraid to just wake up at times), episodes, braces and they still don't get it's a serious painful muscle disorder. Of course one of these ppl is a nurse and tells them there's no such thing as dystonia. If you deal with this please tell me how.